Learn from patients with pain similar to yours

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"Just ignore it."

Jun 25, 2015 5:46 PM


"You just need to eat healthy/exercise more."
"Have you tried yoga?"
"You don't look sick."
"I get headaches sometimes, too."
"Just take some Tylenol."

Do you ever just want to punch people in the throat?

Jun 25, 2015 7:04 PM

Oh hell yes.

Jun 26, 2015 12:43 AM

Can I add "It can't be that bad" and "Don't be so dramatic/Your just being a drama queen" to the list?

Jun 26, 2015 10:00 AM

I've threatened to with one doctor who told me and other doctors that I "was not in as much pain as I said I was" and that it was "all in my head". SHE WAS A PSYCH, SHE'S SUPPOSED TO ACTUALLY UNDERSTAND PEOPLE AND BE ABLE TO HELP PAIN SUFFERERS NOT MAKE THEM WANT TO HURT HER

Jun 26, 2015 10:00 AM

It's over now though, I dealt with it and spoke with her

Jun 26, 2015 1:41 PM

AmieLeBlanc, the "dramatic" comment gets me every time.
I have POTS, and I once had an episode where i told my mother-in-law that I was going to faint, and her response was, "You're only doing it for attention." I proceeded to black out, collapse, and hit my temple on the corner of my dresser. I regained consciousness to hear her go, "WAAAAAHH," as she walked away.
There's so much crap with my husband's family.

Jun 26, 2015 9:01 PM

My favorite "move, movement helps do it you'll see". How can I move when movement causes more pain and inflammation.

Jun 26, 2015 9:40 PM

DDDpain that one gets me too! Especially on a bad day when walking down the hall dislocates my ankle.

Jun 27, 2015 12:51 AM

People suck. I look healthy but I'm hurting from head to toe. For me eating healthy helps a little sometimes but doesn't take away the pain or stiffness that makes me feel paralized but if I think it will help then it is worth the try. So far the only things that help me feel a little better I noticed pom juice, bee pollen turmeric and yams but like I said it doesn't take away the my issues.

Jun 27, 2015 5:25 PM

I think everyone feels this way. The invisible illnesses no one would be able to handle one day in our shoes but they have no problem giving unsolicited advise to us. People are ignorant, think they know what's the best for us & try to tell you mind over matter, just don't think about it. The mind is very powerful, the list could go on for ever... I am fed up as all of you with people's stupidity & ignorance. I would love to punch several people to bad I have CRPS of the hand because if I didn't I would totally love to punch a few people.

Jun 27, 2015 11:28 PM

Oh, believe me, there are many days I'd love to punch someone in the throat.... I went to pain management this past Monday and when I went in the young lady at the front desk asked me how I was doing and when I said I felt really horrible, she told me that i looked fabulous!! I asked her if that meant she thought that I wasn't in as much pain as I was saying i was and she got embarassed and she said, Oh, no, I'm just saying that you look good. I told her that by telling folks who come in for pain management usually "Look Good" because they are puting on a happy face and trying to function and be normal in a world where everyone thinks that your pain is "all in your head". I really do hate it. I had a doctor who told me once he thought that I was just addicted to pain meds and then one day something happened and he needed to have his hip replaced. He's now in constant pain and told me he has a totally new respect and understanding for people who live in pain every day. It really is such a shame that he had to go through that to have some compassion and actually believe that the pain is real

Jun 28, 2015 12:51 AM

Alwayzinpain- amen to what you just wrote & how no one gets how exhausting it is to even put on a fake smile just to shut people up or for any reason. People are dumb it's a fake smile for the exact reasons you stated. As for your dr well karma is a bitch & he met her!

Jul 06, 2015 3:09 PM

Alwayzinpain, kudos for confronting the lady at the desk. I think all of us should do that more often. But sometimes I lack the energy and courage. Your post gave me more courage to speak up next time. We can't rely on karma alone.

Jul 07, 2015 11:17 AM

Omg it makes me mad when I'm told that, they don't know what their talking bout. I only take suggestions from someone that understand s

Aug 06, 2015 11:40 AM

Yes I do. My in-laws especially, "You just need to convince your self that you are fine JUST LIKE you convinced your self you were sick".

Aug 06, 2015 12:30 PM

Yes I've moved practice now and I have made appiontments with most of the doctors in the practice to find the ones that know what I'm going through and it makes such a difference having a doctor that doesn't look at you as if your barking mad and is willing to talk in depth about things affecting you and things that may affect you in time to come an it is greatly reassuring ,I've found that the younger doctors have been given training on their coarse for fibromyalgia and chronic pain where as I've had older doctors haven't had any training or retraining despite the advances in research and medicines over the last decade it's always been older ones that tell me it's all in the mind.
So my advice is ge group of younger doctors in your life.

Aug 06, 2015 1:53 PM

I've had people say to me that I should just convince myself that I'm not sick just like I convinced myself that I am and you know what I said?? You need to get away from me before I punch you in the throat and watch you try to convince yourself that it doesn't hurt or that you can still breathe!!

Aug 06, 2015 2:00 PM

Ignore it?!?! Punch punch punch! I say "I pray to God you never feel this way"

Aug 06, 2015 2:03 PM

I totally agree!! These people thinks it's an occasional ache or pain and not chronic horrific pain and just expect you to talk yourself out of it!! Yeah, ok.. Pain level at 8-8.5/10 for 24/7/365 and I'm supposed to have my brain magically turn the pain off.

Aug 06, 2015 2:17 PM

I have learned over the years a valuable lesson. Do not 'put on your happy face' to go to the doctor. I go in looking like crap. Wrinkled shirt, hair in a ponytail and no make up. Seems that I get better care this way. Sad but true. Do your own experiment see what comes of it.

Aug 06, 2015 3:12 PM

Hmmmmmm my appointment is tomorrow, might give it a try lol....

Aug 06, 2015 4:34 PM

LMB is telling it true... I do that too. If I hurt I say so, and they actually stop and listen. πŸ™πŸŒΌ

Aug 06, 2015 9:12 PM

Lmb, might have to do that with ortho on Friday. That might just work. Thanks.

Aug 06, 2015 9:35 PM

Yeah. I might explain next time that pain is processed in thirteen verifiable, testable and potentially treatable parts of our heads. Or I might not. Lol.

Aug 07, 2015 2:25 PM

I kinda did that today at my appointment. I didn't shave, I didn't comb my hair(I don't normally anyways πŸ˜‚). In and out within 10 minutes, wrote my scripted and wished me good luck....never was easy to get my script normally πŸ˜‚πŸ˜‚πŸ˜‚

Aug 12, 2015 5:24 PM

Family are the worst critics when it comes to our pain and illness. I find that when they are in pain I say the things they say to me" you need to get up, don't let the illness takeover, now they seem to be more understanding.

Aug 18, 2015 10:51 PM

Everyday .. especially my boss when I was working he had no clue

Aug 19, 2015 8:29 AM

Most of the time I just turn into myself and get real quiet due to the years of criticism and being told it was in my head. My husband knows if I am very quiet and not doing anything I am in severe oain.pain. he is very sympathetic and understanding.

Aug 19, 2015 11:11 AM

I usually walk away if I can, and have just learned not to say anything except around my family. 2 lines of chronic health issues makes us pretty open to each other. We're also the weird loud people who go to parks and are so loud other people leave, but I usually laugh.
Ironically, I'm very quiet around most people, especially at school. I get too tired of the conversation turning into "yeah, I kinda hurt today" "where" "all over" "WHERE?" It's just too exhausting.

Aug 19, 2015 11:27 AM

I actually did that today at pain management. No makeup, hair in messy bun and no pain meds. That got me what I needed but it was worth it. My family also notices too if I'm really quiet, that usually means that I'm in agony and don't try to talk to me at that point.

Aug 19, 2015 12:00 PM

Yes ... i would love to punch some throats too!!!!

My personal fav during a flare:
"You have Rheumatoid Arthritis!?OMG no way I have that too .. in my knee!"

Seriously?!? Can't tell you how many times ppl have what i have in thier knee/elbow/or a damn finger. I used to try to explain that its NOT arthritis but it just doesn't work because people really want to know or understand. I don't bother trying anymore. I just say "ohh im great"

Of course you still get the stupid confused look from them because they know you don't look like your great it but gives me a chuckle. Otherwise I really would be punching ppl out or running them over with my car (my preference since I'd probably hurt myself punching ppl all the time) lol

Aug 19, 2015 1:50 PM

I have tried convincing myself many of times I wasnt feeling sick, because trust me I would live to wake up everyday and live a normal life like I did 10 years ago. I love "you dont look sick". Sometimes I just want to punch people.

Aug 19, 2015 3:30 PM

Yeah, I've had a doc listen more when I just dressed the way I feel. Suddenly, "you look sick. What's up? " and my psychologist with pain management was surprised when I dressed up at one point, but it was random. Her question was "do you feel better?" "No, I feel horrible today. That's why I'm wearing this." I tend to dress up when feeling miserable, because I know I will be uncomfortable anyway.

I remember trying to ignore pain for years, and then when it got unbearable the first response from my doctor was how I'd been fine last time. That wasn't true. I just kept pushing, but when you're supposed to be writing at extreme speeds for 8 hours a day (I had teachers who care more about just note taking than anything else), and you are writing left handed and everything cramps, there are no breaks.

I can now (on a good day) write with both hands, but my right is weak and my left is not easy to read.

Aug 22, 2015 2:26 AM

Every day, I've gotten to where I reward myself for just letting it slide. I endured 15 insulting comments, didn't hurt anyone, I deserve a nice chocolate bar, or a giradehli square.

Aug 22, 2015 12:19 PM

I really hate when people find out I'm on disability. I go out on days I'm able and so people only see me on my "good" days and judge me for "working the system" but don't see that on average I don't leave my house 5 days a week because of the pain.

Aug 22, 2015 7:30 PM

Thats definitely the hard part.. ppl see you rarely but just cuz they see you they think your fine. Same applies to doctor's and the people who you are close to know the truth.

If people have a problem with it then they have no useful place in your life so tellem to loose ur number ...other ppl you don't know who judge will only effect you if u let them so don't let them, what they say or think is of no consequence.

Sep 08, 2015 5:36 PM

"But you're too young for those problems." Grr. I know! I'm 27 and my body thinks I'm 70

Sep 15, 2015 3:49 PM

All the time...I excerise,eat healthy and still in pain.

Sep 15, 2015 4:17 PM

I don't know of any of you have run into this. I call it the competitor. You want to tell them about what is going on with you. That you are having a bad day. You just want someone to understand and listen. and they tell you that they feel that way all the time. Your pain is like an 8 and you can not imagine living like this for the rest of your life but you know it may be a reality. You feel this way now and you can't do anything now. In fact there are many times you can not do things because of the pain you are in. And they just sat there and told you that they have been in pain the same as you and many times worse than you. But to your recollection, you have never seen there life altered like yours. You have seen them as a pretty happy person who doesn't suffer from chronic pain. You can't see how they use that expression they feel like that all the time. These same people, I made the comment to, I just made the comment, it was only two people. I only talk to five people. I am agoraphobic. I told them I am on 20 pills a day, and they had to find a way with supplements to beat the amount of pills I take. I told them I didnt care. They can win that one any day. I think that is crazy. I was just curious if you all have run into those people.

Sep 15, 2015 5:12 PM

Yes so many oh u dont look sick & one recent said as ur a chronic pain patient op wont b benificial to me wtf!!!! Its grade 5 ostio in knee so a bit of karma called my GP & MP and kicked butt!!! As thats discrimination how bad has it got to b before u get taken seriously??? Even now gp at surgery who i never saw bit have to now as mine gone is now bending over backwards for me that wouldnt of happened wothout my medical evidence it really grates me that so many are judgemental sending hugs xx

Sep 15, 2015 5:39 PM

Oh yes profiler .. a few times. I had a coworker who I was pretty good friends with that was dxd with Rheumatoid Arthritis a couple of years before I was.. she tests postive so her RA was caught very quickly. I was almost in a wheelchair by the time they caught mine. Anytime I would say anything (when shed specifically ask me) it always went off into the 50 million reasons why her pain and problems were worse than mine.

Her pain was mostly in her hands so she would say that it hurt really bad to hold the steering wheel on the way into work but then after she got into work shed sit there and crochet at her desk??. She was given the ability to work from home when she was hurting but then she'd come in and brag about the vacations she was going on all the time and how she drove to Maine and Florida.

She couldnt drive to come into work but she did craft shows regularly on weekends. There were times when she was supposed to be home working and shed be off getting her hair and nails done??

I never would intentionally minimize her pain.. I would never do that to anyone. . Even when I wasn't sick and didn't understand. I eventually started to find it very hard to be around her and continue being friends with her because she seriously abused the system and she was completely full of crap about her pain and she was getting away with it...her boss knew it and didn't do a thing about it.

I have reasonable accommodations at work too and I'm grateful because it allows me to keep working... but I still feel bad when I have to use it but its the only way I can continue to work ...I need to work. Having to watch her do that day in and out made me so angry because its people like her who ruin it for the rest of us who really need it. It's disgusting.

Sep 15, 2015 5:49 PM

Yes I have profiler. It seems they always try trumping everyone around them. I've just learned to not mention anything around them. Silence is golden, as they say! πŸ™πŸŒΌ

Sep 15, 2015 6:09 PM

"Oh I didn't have that reaction, and I have it (test) all the time." 0.o

Nov 02, 2015 2:43 AM

I was told by some of my family members that I am a hyprocondract(don't know how to spell the word, I hope.you know what I mean) I also always get the "your too young" you don't look sick" everyday. I use to have so many friends until eveeytime they asked how I was it became a competion. None of them have chronic pain either. They just said that their aches and pains from sports were worse than my CRP . Sometimes I hate people!

Nov 02, 2015 7:53 AM

That's a natural reaction from most healthy people. Just learn to let it go on one ear and out the other. And those who habitually make it a competition, stop telling them anything, or stop them in their tracks. Say something like, " This isn't a competition. I'm trying to explain how my conditions are affecting my life today. But it's apparent you aren't concerned enough to listen, because you want to compare your pains to mine. There is no comparison, because unlike your pain, mine will never go away. It will only worsen, and as it does I needed someone who will listen and help me to work through it. You obviously aren't going to be supportive. " Then turn and walk away. Hugs & prayers you have a good day today!

πŸ™πŸŒΌ

Nov 02, 2015 8:29 AM

I have crps and I think for the most part you can't see something is wrong unless your skin changes color but from what I understand,not everyone's does that. So like a lot of healthy people, they feel if there is no boo boo,, you must be normal like them. Healthy people take good health for granted. They look around and they think everyone is o.k unless you are in a wheelchair and crutches, things like that. I know because I was one of those healthy ones and I was empathetic at the same time to people but unless someone told me their story I didn't see others as sick or havinf a disease if they were going slow and limited. It should have been obvious. But unless I took the time, everyone was normal. l think that is the way everyone normal likes to feel. I also feel that many healthy people don't want to feel that they have to slow down to talk to someone or be patient with someone who is not healthy. In many ways, they feel like they brought it upon themselves by not eating right, not exercising, putting themselves in harms way. But we would all like to be healthy and not know what it is like to be in chronic pain. We just wish we had the empathy

I don't want to come down on healthy people. It is just that being healty doesn't allow most of them to take the time to imagine or' develop empathy for the ones in chronic pain or illness

That is why it is so nice to find healthy friends who try to be understanding and kind, who do have empathy. My wife says I sound cynical. I told her I use to be this way. Maybe I was just a scumbag. ha ha.

Nov 02, 2015 8:45 AM

I wanted to respond earlier but was busy trying to catch my breath after laughing so hard. I actually punched my sister right in the middle of her face after years of hearing her say all those things. Even after 2 back surgeries. She started crying and said it hurt. I gave back all those platitudes she ever spewed at me. I think we all feel that way sometimes. I just finally had enough and acted on it.

Nov 02, 2015 8:56 AM

My son has a hard time understanding everything I am going through. When he was here last time he looked at my transport chair and told me I should be walking not riding. OMG it's infuriating!

Nov 02, 2015 8:56 AM

Omg cearea!!!! I kinda giggled reading this!! I don't promote violence! But good just standing up for yourself!!!

Nov 02, 2015 9:42 AM

I had to! She was a bully and I got tired of being the peace keeper. I told her to ignore the pain and the blood, it would go away. I did make my point though.

Nov 02, 2015 9:45 AM

Yes you did make a point!!! I'm proud of you!!!!

Nov 02, 2015 9:46 AM

Thanks.

Nov 03, 2015 9:49 AM

Jenna, the same happens to me. I have a "friend" who is disabled with back pain and a lot younger than I am. Each time she texts me that she is hurting and doesn't know what to do, she keeps giving me reasons why my suggestions will not work for her. It's very difficult. When she asks how I am and I tell her, she always has something worse or more painful.. (If I say I have a headache, she has a migraine, etc). It is frustrating, I know. As time goes by, you will attain better coping skills and when they say those things you really won't give a crap. The others have given you good, sound advice. You'll find your way and you'll find who your true friends are. Just know that you have many here who care and will never let you suffer in solitude. We will be here for you when you need us. Hang in there. Sending gentle {{{Hugs}}} and prayers your way. πŸŒ»πŸ™πŸ»

Nov 03, 2015 4:36 PM

Because I also have type 1 diabetes as well, I'm constantly judged and told off for things no-one has a clue about. So if it's not the fibro being dismissed as nothing, it's being advised on my diabetes (from people with no medical experience of any type of diabetes). I want to scream in their faces.

Nov 23, 2015 7:55 AM

Drives me crazy!

Nov 23, 2015 6:23 PM

Heck yes if it didn't hurt me to do so. I use to throw my ball against wall to relieve anger now I try to refocus cause angry makes you hurt more.

Jan 08, 2016 7:37 AM

I hate ppl. I'm lucky enough to have the one person whos understanding because she has lupus but even my husband and I have daughter about my pain. When he was having prob with his ulcers he tool time off work and I just said it must be nice to do cuz I don't get anything off no matter how bad I feel and his response was well if I'm stuck like this forever I might as well get used to working through the pain. I punched him and he hasn't had a damn thing to say about my fibro since

Jan 10, 2016 12:37 PM

Hi
I wish I could carry a neon sign saying I've had loads of medication to get outside, you see me because I've managed to get out. Not because I'm suddenly fixed, it's the med.
I try not to stand next to anyone at school, because now my condition has defined me as a human, nothing which has gone before me is anyone else interested in. They think oh it's a bit of back pain, that will slip back in again, why aren't you fixed now. God help me, I wish I had the answer.
Try to stay smiling with a positive outlook, but that doesn't mean I'm fixed world!!!!

Sending 🌸 flowers to fellow sufferers πŸ’

Jan 10, 2016 1:00 PM

I hear you loud and clear!!! Wish that you didn't have to deal with that stuff. I know what you mean when people are saying those things. It's annoying as hell. They tell you, oh stop taking all that shit and you'll feel better, or think positive, you'll be just fine, find something to do, go out and have a beer or something and you'll be ok. They are clueless.. I've been in chronic pain for 23 years and have had 29 surgeries during that time. Nothing makes it better. I can think of things I love, I can sing, dance , put on a smile when people are around and I'm still at a level 8 pain!! Don't tell me "oh, but you look so good, you don't look sick". There are millions of people who suffer from "invisible" illnesses like Crohn's or Fibro or cancer or lupus, MS, etc. people need to wake the hell up and realize that we didn't ask for any of this and we certainly never imagined our lives would end up like this. This is the one thing that really gets under my skin and infuriates me. Hang in there. Sending you gentle {{{Hugs}}} and prayers that you have a better day. πŸ’•πŸ™πŸ»πŸŒ»

Jan 10, 2016 1:12 PM

Absolutely I agree. We put on a smile for the world even with intense pain. I hate it when folk say, that there's always someone worse off. We know that. I also know that each person's disability is unique to them, and we all try our best everyday. Lots of Love 🌻🌼🌹

Jan 11, 2016 4:45 AM

At went to visit my brothers recently and he thought he sprained his wrist, he was right around me when he said " we just suck it up, that what we do and move on". I was so offended by that comment. My family defines themselves by how hard they work. I was the same way. That is why I grieved not being able to work so much. But my family thought I would be able to have a normal life if I would get off the pain pills. Then they thought I would have a normal life if I would just get up and walk normal. This being after seven surgeries and a leg now an inch shorter. Then finially they were just disappointed. Like this is the life I chose. I did not live up to the family tradition of rub dirt on it and get back up. As a family, we are strong willed people. I was very successful. It should have told them something when I couldn't do it any more. People can just amaze you sometime and you might have to give up on them like they gave up on you.

Jan 11, 2016 5:19 AM

Sad and painful profiler but yet true..I'm at the crossroads of this myself right now. But I'm still hoping they will get it..

Jan 11, 2016 7:09 AM

Hi patroller, had the same crap from some of my in laws. Course we chose to not be able to work and the financial implications that go with it, oh yes we love the fact our lives are no where near what we dreamt of. We just love being in agony , something they will never understand the intensity of. We love watching life go by not being able to fully take part. I would do anything to work again, be self reliant, to be able to have a full relationship with my hubbie and not need him to help me .. Some people don't realise how lucky they are not to be in so much agony that even paralysis or death seems a better option sometimes. I have an amazing husband who helps me without a moan or whinge and he is all I really need but I would love to be able to go places, have fun doing silly things like zorbing, sledging etc with him but I can't . I have a sister who just lives her life like I don't exist. I lost my dad in DEC 2011 and my beautiful mum in Aug 2013 since then my husband has been my rock, but I have even told him to go find someone who can be a 'propper ' wife but he loves me enough to stay which I'm truly grateful for. To those who can't support you they aren't worth your time or pain so don't waste limitations energy on people that suck the life out of you. πŸ˜€

Jan 11, 2016 9:13 AM

Cnan, that was an incredibly selfless statement you made to your hubby about finding a "proper wife". Just because you are sick and in pain does not make you any less the woman he fell in love with!! You ARE a proper wife. There are no guidelines as to the "rules and regulations" of what a husband or wife should be. What you are is a team.. Two people who love one another unconditionally and help one another and lean on one another and share your lives together. It saddens me that you think you are not considering yourself "proper" wife material for him and how lovely that he loves you so very much as to think that was not an option and stayed.. That speaks volumes as to how much he loves you. My folks have been married for 60 years. During those years, my Dad went to work, Mom stayed home and took care of us kids and the house. Dad always did all the grocery shopping (and still does at 86 years young) and does dishes after dinner, etc.. Some people have very different marriages.. Some wives go to work and hubby stays home and takes care of kids and house. Some live as independent of each other and have nights out with their perspective friends... There is NO "normal" or "proper". It's all what works for you. You're right about people who don't support you sucking the life out of you. I have a friend I've known for probably 25 years or more and she went to school with my younger Sister. She is on disability and suffers pain every day. She'll text me and say what's hurting her and I'll give her suggestions to help her feel better. The only responses I get are why the suggestions won't work for her and when she asks how I am, I tell her and she always had to tell me why whatever she is dealing with that day is worse than mine. Pain is relative.. It's different for all of us. We all have different levels of pain and tolerance to that pain. It's not a competition. Believe me, I don't like to post when I'm having a bad day because I feel guilty that there are so many others here worse off than myself. I'm glad for this pain warrior family. We can lean on each other and we can say how we feel without any worry of being judged. You're all very important to me and I wish I could hug each and every one of you.
Profiler, as far as your brother and his sprained wrist.. Good for him. I'm glad he could "suck it up and move on" he'd sing a different tune if he went through half of what you have. Please don't let his comments hurt you (which is what he wanted to do). You are always a positive force in this community and your advice, compassion and upbeat way of thinking is really a gift.
I am sending everyone lots of love, great big (but gentle) {{{Hugs}}} and prayers that you are all having a peaceful and lighter pain day. πŸ’•πŸ™πŸ»πŸŒ»

Jan 11, 2016 12:28 PM

Cnan, I understand where you're coming from. I started having pelvic floor issues in 1998, including severe spasms, & our intimacy became less and less. Then after the 4th pelvic surgery, for the large mass in 2010, it's no longer possible to even try. I felt so guilty for several years and kept joking for him to find a younger, more able woman. He stopped me one day and told me, "When we said our vows 31 years ago, we both agreed better or worse, sickness or health. There's more I love about you than just our sexually active years. I'm still committed and you need to stop doubting that you are worthy."

We've been married 34 years now, and our emotional intimacy has grown so much since that one conversation. There is more to a marriage than the sexual intimacy, especially when commitment is #1. Ask yourself, " If he was sick instead of you, would you feel differently than he does? ". I seriously doubt it. I know you'd be right by his side, just like he is yours. Hugs & prayers! πŸ˜·πŸ™πŸŒΌ

Jan 13, 2016 3:49 AM

It feels so surreal, doesn't it, that we are just stopped in our tracks and halted and have to rethink our existence. I feel the same, always worked hard, but this last few years my body became really unreliable and unpredictable. I'm trying to rethink what an earth I can do to participate in life again.

Jan 13, 2016 5:59 AM

Dahlia, I take everything one step at a time. It's been like getting hit in the gut and the wind knocked out of you! Your whole life is turned upside down, and we are learning how to walk again, eat again, etc. I'll never have my old life back, but I'll be darned if I sit down and quit living. I'm just going to take it slower and alter how I do things. And for things I can't do, maybe I can find something else to enjoy. Like I use to sit in the floor with the grandkids to play, but we now sit on the bed or at the table. I use to sew and cross stitch, but the weakness and tremors and cramps, & neck/headaches brought that to a halt. And I'm still working on a replacement there. Lol. Hugs, prayers, & love to you all! πŸ˜·πŸ™πŸŒΌπŸ’•

Jan 13, 2016 8:31 AM

Yes I've the same attitude, just have to find new ways to do things. I accept the worse days, there is always a brighter day to come. I think supportive reclining chairs will be my way forward. πŸ’ŸπŸΆπŸ’β˜•

Jan 14, 2016 12:44 AM

From a dad who refused to treat my migraines, to doctors who don't even need to listen to judge, I've seen it my whole life.

Jan 31, 2016 2:24 PM

This is scary. I work in a health care setting and this happens to me all the time

Jan 31, 2016 2:26 PM

Also happens with some of my family - thing is I love to be at work but sometimes I really struggle but I'm sure people think I'm putting it all in. If only they could walk in my shoes for a while

Jan 31, 2016 3:46 PM

Can I add "oh everyone gets some aches" or "I'm sure it's just some growing pains" or actual quote from my dad after I told him about a pain in my foot "I remember aching in my muscles after playing football when I was about your age" my reply "yeh you had stiff fingers, a messed up back and pain in basically every joint in your body too?" It really frustrates me when people tell me its growing pains when in reality I havent grown in years and im not likely too anymore and if it was just growing pains surely I would have had pains when I was actually growing not just now...GRR. I jut hate it when people think they understand so because they think they know a pain similar to yours they downgrade how bad the pain actually isπŸ’–

Jan 31, 2016 3:47 PM

Koalabear, I am forever thinking "if only they could actually have my body for a day and feel the burden"

Jan 31, 2016 6:56 PM

I have fibromyalgia and ankylosing spondylitis. I totally relate and it is so frustrating especially people at work. I'm a teacher and am taking time off and I know people think I'm faking or making a big deal out of nothing. I'm broke from unpaid leave waiting for my disability to be approved. So I don't know why they think I enjoy being broke, canceling plans, and having no social life. Thanks for the post. I'm glad to see others are going through the same thing.

Jan 31, 2016 7:29 PM

This post is soooo true - I am so far from a violent person, but man!!! My mom "kicked me out" again for the 50 th time tonight. It is just unbelievable to me to treat someone like that!!!

Jan 31, 2016 7:32 PM

Just got told, "Walk more, you'll feel better." How in the hell am I supposed to walk more when it even hurts to stand up straight most days.

Jan 31, 2016 7:33 PM

That is awful Bohobeachmom. I really wish people could trade bodies with us for a day!!! Hang in there.

Jan 31, 2016 7:37 PM

I can barely walk to the bathroom some days. People are just ignorant and need to be quiet unless they learn about our illnesses.

Jan 31, 2016 10:00 PM

Thanks HeatherH122!!! Finding support here the past 24 hours has been amazing!

Feb 01, 2016 12:55 AM

You're welcome. Thats what we're here for, ☺☺☺

Feb 01, 2016 1:15 AM

Totally!
Do these people actually believe that we want to be bed/housebound for weeks on end? Do they believe that we want to give up on our past hobbies and our friendships? Do they believe that we want to stop working and travelling the world? Or that we want to be a burden to our loved ones. Having to ask for help for tasks that others take for granted like getting g dressed or making a sandwich.

I think some people are fearful. Especially if they've witnessed your life change. I think it frightens them and shows them that it can happen to anyone. In their own selfish defence they make these comments. Refusing to accept that it could indeed happen to them.
I have to remind myself of this idea regularly...its the only thing stopping me from punching them in the throat! !! Lol.
Best wishes to you all. Fingers crossed for a peaceful and less painful day xxxxxx

Feb 01, 2016 1:29 AM

I totally agree! Thank you for this post keza34!!!

Feb 01, 2016 8:47 AM

Keza, you are spot on! πŸ™‚πŸ™πŸ’•πŸŒΌ

Feb 03, 2016 1:16 PM

Yep all the time

Feb 05, 2016 9:02 PM

Keza, if you ever punch me, please avoid the throat. I don't think I could breath. I would hate to make you upset. πŸ˜€πŸ˜€πŸ˜€πŸ˜€how have you been?

Mar 06, 2016 11:50 AM

Flimsywrists- I have the same issues with my husband & his family! I asked him to leave for a couple of days, just so I could get some real rest. I didn't realize he or them could be so cruel.

Jun 06, 2016 1:09 PM

Yes ...

Jun 16, 2016 8:30 AM

Oh my goodness,every day. I spent two years being told I'm crazy and not sickof until I just stopped complaining because I couldn't stand hearing it any more. And regret it every day because it made me so much sicker.
We have to learn to be strong and trust our own instincts because only we know how we feel. We can't let other peoples opinions get in the way of Herrington treatment we need

Jun 17, 2016 7:11 PM

Oh yes. Starting with my friends. Sum family members and strangers. They'll b like " why do u walk so slow? Make an effort, love!" in my mind i b like " try to walk on my shoes for jst one day and believe u'll change this stupid judgment!".
Some say: yeah u always complain about feeling ill, or tired etc
One day a grl i met through my friend said to me: u shld wear high heels in the club especially when u wearing a dress, it looks better. My friend replied: " she got a medical condition that makes it uncomfortable. And all she said was "she dnt look sick"
I was fuming of rage and jst said, " sick or not sick, with the state of ur teeth, id rather b ill!"
Was i mean? O still apologised at the end coz i left her crying...

Jun 23, 2016 5:43 PM

Yea hearing those things are devastating and yes I feel a punch n the throat is completely acceptable lol I'm totally with u

Jun 24, 2016 9:19 AM

Yup every day I want to do that. Just grin and bear it... Add that one too

Jun 25, 2016 8:22 AM

Umm, I do think that was harsher than you really wanted. Sorry, that she " said what she said but...maybe you hurting her back was not the way you intend. We don't have the right to verbally punch people in the throat because they are uneducated and sometimes really do not know you are sick. Now, before other people jump all over me, I will stand firm on this personal opinion. We are sick, sometimes they can see it and sometimes they can not. It is our reactions that can either help or make us "sicker"...it is our reactions that matter to our physical health. We all will have issues with people...we have to learn how to cope and live... sometimes I see a lot of "poor poor me" I am sick...the world needs to know how I need to be treated. However, there are billions of people living on this planet along side of us and we expect "them" to "know" when they are stepping on a delicate issue. We have to stop...breath... educate, not intimidate or run away and cry...every single human being has invisible issues..I am sorry you were hurt..and I know from living life...it will happen again..just don't hurt back. I offer this with love and support, Terri

Jun 27, 2016 1:19 AM

Not all the time but enough for it to get to me!!

Jul 26, 2016 11:15 PM

Oh heck yes

Jul 27, 2016 1:47 AM

Sick of having to justify myself to people that dont have a clue and are ignorant. Gx

Jul 27, 2016 5:22 AM

Most days...unfortunately that's what comes with having an invisible illness!! However if someone gives you a compliment except it...if you don't look ill be thankful..I for one don't want to look sick all the time..so I say instead of getting pissed off..turn the negative comments into positive one's..trust me it works. I'd much rather have someone say " wow you look well and healthy today" that being told " oh dear you look so tired and ill bet you feel like crap!" So no sometimes hearing positive things can give you a boost to get thru another day.

Jul 27, 2016 5:28 AM

Well said Terri... 🌷

i have come to learn this🐴 with age tho... and i prefer to use humour to diffuse a situation now...🐫 but many years ago my mouth could draw in a crowd i was so angry! 😀

Thing is... the only person i was hurting was me!

There is already too much anger in the world 🌍

Im a little wiser now 😊

Jul 27, 2016 10:18 AM

Lulabel, that's a great way to handle things. I used to have a very short fuse and I really would explode if pushed far enough. I don't have the energy for that bullshit any longer and I, too, use humor many times. The only time I didn't was recently when I took a bad fall doing something for my Dad and then got cut off TWICE by the same person. I got out of my car and started yelling at this chick and she started cursing at me in Spanish and called me a fat pig. Well, I told her to step off or I'd wipe up the pavement with her and she punched me in the face!!! I saw red and punched the shit out of her and the cops cameπŸ™„. Thank goodness there were two ladies in a car who saw the whole thing and I was dismissed by the police after they took the report. Shame on me.. But she hit me and then I just lost it. (It is good to know that at my age and physical condition, I can still take a punch to the face and not land on my ass.... LMAO!!!) πŸ˜‚πŸ˜‚

Jul 27, 2016 10:54 AM

πŸ€—Hehehe oh i would have bounced her too... once anyone lays hands on me, game on!
I run people over in my wheelchair if they are ignorant... or i have been known to accidentally take a swipe with my stick! (Only at ankles... im not a savage!!!) But the best is the lash of my tongue and the cut of my witt...🐫...and the riding crop in the boot of my car gives me great pleasure...πŸ˜‰ oh sorry thats another story lolπŸ‘…
⚘ im proud of u for finishing her off... but it is duely noted in the 'naughty' book missy! 🐴

Jul 27, 2016 2:36 PM

Lulabel... LOL!!! I love the riding crop.. I have several myself including a dressage whip that I used to use to keep low hanging branches away from my horses face. That's ok, I noted it in the naughty book but I do much more good than bad so it'll be erased soon enough.. πŸ’•πŸ™πŸ»πŸŒ»πŸ˜Š

Jul 29, 2016 8:22 PM

This happened to me too. Since my accident my life had changed, dare I say, to the better. I now don't tell people how I am doing when they ask me as it only makes them uncomfortable. I cut off friendship that never was with people that do not accept me and my condition. I surround myself with people that care deeply about me, ie. My partner and daughter. My world has become smaller as I will usually be in too much pain to travel too far but I have never been at more peace with myself. People that are not sympathetic with my condition do not put food on my table so in my opinion, their opinions do not matter :)

Jul 31, 2016 12:04 AM

Yes Exrc, my world has shrunk to the degree that my pain has worsened. I have cut out the dead wood & even some old friends (and that hurt deep) because I had to. Even as to reducing the area that I shop & run errands in. Everything had to be streamlined to accommodate my changing level of pain. When it gets unbearable I want to be close to my family & home, not in the city where I might be stuck in a ton of traffic. I try to manage my pain by territory & love, I guess. Kind of sad it is.

Jul 31, 2016 12:15 AM

Yup, I just changed pain management doctors because mine looked me straight in the face (2 wks after I'd been officially diagnosed with Fibromyalgia) and told me he didn't believe Fibro existed...yea, I suffer in pain daily, feel like I've been beaten with a baseball bat, and ache all over from something that doesn't exist...

Aug 04, 2016 3:02 AM

Every day

Aug 05, 2016 11:04 AM

Every damn day!

Aug 05, 2016 6:17 PM

Zoinks! Almost all the time some days better than others especially the leg or foot "attacks" I can do most activities as for my mom it lands her bedridden and she can't get out of bed, but as for me it's tolerable and I go on with my day! My prayers fir all of you, hope all goes well with hugs and prayers hope to hear from you!!!

Aug 07, 2016 10:39 AM

My own family doesn't believe that I have fibromyalgia, and they don't acknowledge the severity of my pain and disabilities. I hear all of those things and more, even some from my doctors... I don't think they even believe me fully. It's extremely frustrating, depressing, and alienating to feel that everyone only believes what they can physically see. Having an "invisible illness" is isolating and depressing, not just for the pain and lack of ability to do normal things, but also for the emotional alienation from everyone (especially from those that are supposed to help you). I have become emotionally numb and cold from years of all of this. I just don't know how to feel anymore. All I feel is anger and depression, but at the same time, I don't even feel those as much anymore either. I want to die, but I'm not suicidal. I just don't want to feel this pain and isolation anymore. I feel so alone,and like I'm just a burden and waste of space. My whole life is falling apart and I don't know how you deal with it. The only end in sight that I see is death...

Aug 07, 2016 11:27 AM

You're not alone I'm in the same shoes and I've been in this way with neuropathy and neck pain and it's is very common for people to mock, ignore call you a lying alien and that is very much the truth I go through it every single day and here is my coping skills " zoning " and that is is to face pain and then tune out pain and people who make you frustrated, just tune it out if you can't, there is this app on your computer or android phone, it is says Reflexology and it has every thing even things in your kitchen that will help with your pain and the app is free to download I think it will benefit you very much! I have to wake up to discrimination everyday and I feel for you. You're not alone! Hugs love and prayers go out to you!!!

Aug 07, 2016 11:37 AM

Aimes1407, as long as we carry these "invisible" illnesses that we have all too well learned to hide from others, people will not believe. We have horrible pain and we suck it up and show a smiling face. People think we're ok and have no idea that we're dying inside. That the pain is so bad that we just want it to stop. That we can't remember a time when there was no pain and had a normal life. It's a very sad thing. You have to live one moment at a time and be present in the present. The past is over, tomorrow has yet to come. All we have is the here and now. We need to see the gifts in between the miserable moments. It could be a kiss from your dog, it could be the sun shining through after a thunderstorm, it could be a call from a friend or family member whom you've not heard from in a while. All of these things are joyful. There CAN be and IS happiness and joy between the pain. It's a matter of changing your focus and looking for it. Someone who makes you laugh or smile, someone who held the door for you when you didn't expect it. I know how you feel and I've been there more times than I care to admit. It sucks, I don't take that from you. I just want you to know that you have an entire community family behind you that is here to support you and hold you up when you feel like you can't stand on your own. You got this, you're strong and you have the will (even if you don't think you do) to get through. It will get better and then worse and then better again. It's a roller coaster for sure but one that can be ridden with the help and love of others. Sending you gentle {{{Hugs}}} and prayers that you have a better day.πŸ’•πŸ™πŸ»πŸŒ»πŸ˜Š

Aug 07, 2016 11:37 PM

Hi there it's OK to ask for support from your friends and family when you are in the edge of breaking down we as well as your family and friends just leave a response with us and touch base and ask for support from your circle ask for one of your friends or family members to give you guidance and faith. Just like mustard seed is all you need you will succeed!

Aug 07, 2016 11:51 PM

Thanks for the strong letter of manners and I am having a much better day and thank you for helping learn how this app runs you're right I am sometimes babbling and I have a low social I. Q. And the cause of this problem is that I have autism spectrum disorders and I have a weird way in words so I beg your pardon if that is an inconvenience I created please forgive me

Aug 08, 2016 6:34 PM

My personal favorites include "But you're so young!" "You're too young to be sick!" "Doesn't x, y, z come around when you're 40 or 50, not 20?"

Aug 08, 2016 7:59 PM

Yes as you get older your body starts needing more medical attention and it is not fun and it stinks when I was 20 years old I was a generally healthy lady as I aged my health went down hill I'm now 43 years old and I am not very healthy at all! Have you reached your X, Y, And Z's? I sure have anyone you've known had severe chronic pain talk to them about this app let me know. Best wishes prayers for you hope to hear from you, hope at goes well

Aug 08, 2016 8:17 PM

Hi as a baby I had chronic ear infections tonsillitis and sinusitis and Baby Measles and if that's not all, needing a hysterectomy and I had countless strep throats cases of Bronchitis and impetigo infection too many times! Now I am chronically ill unlike the other illnesses that I had starting birth that came and went away Now that's is young XYZ problems but now they are lifelong I take back the last comment just before this one XY and Z's can happen anytime and anywhere!!! I had some nasty ones!!! Hope all goes well, hope to hear from you again love hugs and blessings to you

Aug 09, 2016 2:22 AM

I sooooo hear all of you. My brother-in-law is a physical trainer. He has said to my sister that I MUST be exaggerating my pain. NO ONE can have that kind of pain ALL THE TIME. I have fibro and chronic pain syndrome. I'm usually btwn a 6.5 (on a very good day)- 9.
But one day he starts thrashing around the bed, moaning and crying out in pain.
He winds up in the hospital where they give him morphine for his pain along w an MRI to try to figure out why he's hurting so much.
Conclusion: he has the bloody FLU!
Talk about ridiculous.
But I exaggerate my pain?!,
He doesn't say that any more since I called him to the carpet about it.
Fortunately, the rest of my family is incredibly supportive.- that includes my sister from another mister. Who also has fibro and other pain issues and is for the most part wheelchair-bound. We support each other.
But there are pleanty of people we'd like to punch in the throat... A lot.... Multiple times.
Soft hugs to all out there who need one and well wishes

Aug 10, 2016 9:15 AM

In fact sometimes I do. My neck pain and neuropathy can get to the point I go bananas but I control myself so I am safe to be around but I can get quite belligerent and quite the verbally threatening one and that scares many people! But now I display a hot temper and back talks at others who I disagree with and yes I sometimes feel like punching someone in the the throat and that's a fact thanks for asking!

Aug 10, 2016 9:21 AM

I hope I didn't scare you I get frustrated with the pain I have would you please pray for me oh I have impulse control disorder and please forgive me for what I have said, best wishes to you hope all goes well, hope to hear from you soon!

Aug 10, 2016 11:57 AM

No worries, there's many times that I've wanted to punch someone in the throat.. LOL!!

Aug 11, 2016 2:00 PM

Me too... omg... so many times! Ive πŸ˜•had so many consultant neurologists.. πŸ€”ive had one struck off for being so cruel to me...πŸ˜₯ and another forced😀 to take early retirement... both horrid old dinosaurs with no idea of the changeπŸ’‰πŸ’Š in medicine... i went right up to my MP with one old fart!🎩 So.. if u ask me... they were luckyπŸ‘— i am a classy chick... and i dont want bloodπŸ‘  on my shoes😲 tyvm hehehe... im so missunderstood 🐴

Aug 11, 2016 2:57 PM

I've had quite some quacks myself like one I did see but was was soooooo horrible he'd make a quack look like a really good doctor and he was vicious and mean I hated him so again we're in the same boat and NO paddle join the club! Again we're in the same boat

Aug 16, 2016 9:40 AM

Hello everyone I'm new to this..Does anyone suffer from bad headaches and dizziness along with the feeling of a heavy head? It's awful and been going on for months..

Aug 16, 2016 1:57 PM

Hello Tina... try searching from the discussion page... top right is a magnifyer icon 🌷

Aug 16, 2016 2:03 PM

Hello Lulabel thank you for replying. This is new to me and can't see any iconsπŸ˜ƒ

Aug 16, 2016 2:05 PM

Hehe...🐴 i had to go get bloody glasses to see that! Im only 44...
#justgettingold πŸͺ

Aug 16, 2016 2:06 PM

Lol ok will search a little better

Aug 16, 2016 2:08 PM

Above ur list of bookmarks at the top... back from this page... i knowπŸ€— it took me ages ⚘

Aug 16, 2016 2:11 PM

Ok thank you will have a look

Aug 21, 2016 10:31 AM

I can't even express the feeling I am having coming here and reading these comments. Voices of people who can relate to how I feel it is all so overwhelming. I've felt so alone dealing with my chronic pain and disability and no one seems to understand except for my partner who is with me everyday and even sometimes she doesn't get it. People's lack of understanding is astounding to me. I don't know why it is hard for people to comprehend that being in constant pain effects every aspect of your life. Just because we may look fine does not mean we are, most of the times I am screaming on the inside. It is exhausting trying to "fit in" and look or be "normal" faking the smile and happy persona exerts so much energy at times. If only people could spend a few days in our shoes and feel what we feel they would understand, they would see.

Aug 21, 2016 10:54 AM

It IS exhausting but unfortunately unless you live it like we do, people will not be able to understand. I really don't think that most people are trying to be mean, it's ignorance and just not "getting it".
You're amongst good people here Hon. There's laughter, comfort, venting, etc.. Have no fear, someone is always here!! (Here I come to save the day!!!πŸ‡πŸ‘£πŸ˜œ
Welcome aboard!! Tell us about yourself and the diagnosis you've been given. I'm sure there are many similar people here who will be more than willing to share. {{{Hugs}}}πŸ’•πŸ™πŸ»πŸŒ»πŸ˜Š

Aug 21, 2016 11:47 AM

Whoowhoop! πŸ˜™
‴what Always said! U dont have to be alone anymore sweetpea! ⚘... isolating myself🐫 never really helped me, πŸͺbut its easier not to have to explain it over again.🐴.. its completely exhausting! Luckily..πŸ€—. we all 'get it' here... πŸ€—so u can just be urself with us hunni 😚

Aug 21, 2016 12:50 PM

@ Tina44, I get migraines and cervicogenic headaches. I'd never heard of cervicogenic headaches until another member here told me about them. I mentioned it to my Ortho & neurologist and they both agreed, and it was coming from my neck discs. All along I'd been thinking my migraines were worsening, but the cervicogenic headaches set of migraines & voice versa. I just had my third ACDF on C3-C4 two weeks ago; C4-5 in '92, C5-7 in '95. Not only did they do the cervical disc fusion, replace an old plate & screws with a new set, but he had to shave away lots of arthritic spurs that were pressing on nerves and the spinal canal.
I can say I've not had the first headache since my surgery. They are planning to do PT for my neck muscles, which are weak and I have limited mobility. The doc said the head is like an orange trying to be held up by a toothpick, which can also affect headaches, so muscle strength is important. I'm not saying these are your issues, but maybe getting an orthopedic exam would help find out rule out possible causes.

I also have had dizziness issues since about 2005. We thought they were due to sinus issues. But last year the dizziness led to imbalances and I was sent to Mayo clinic. I have developed tremors as well. Multiple other symptoms caused several docs to suspect MS but thankfully it's not. They determined I have an issue with my Cranial 8 nerve that is causing the imbalance & some dizziness (not the vertigo caused by sinuses). I get vertigo out of nowhere and sinus issues, and it's different than the imbalance spells. I can be walking and suddenly veer sideways into the wall, or turn a corner and slam into the door jamb, or turn around to go back the other way and completely lose balance and start to fall. I realized my sinuses & allergies are connected to tinnitus, and if that goes on to long I get the vertigo. Track your symptoms to see if you have any coinciding symptoms that create a pattern. Hopefully you can see if you go, and your doctor can get an idea of what test to run. Hugs love & prayers you can get answers soon to get relief! πŸ™‚πŸ’•πŸ™πŸŒΈ

Aug 21, 2016 2:17 PM

Crystalina, I felt the same way when I stumbled onto the app several years ago. I felt so depressed and alone, with no one to talk to. Even my hubby didn't understand. I've been out of work since 2010 and have had so many new diagnoses (dx) addressed yearly, I'm never going back to work. It wasn't until last year when I was dx with sjogrens, and my hubby went to my appointment to get the dx that he understood. He made a comment about being glad when the medicine took effect and I'd go back to normal. Literally the doc went off on him with, "You apparently have no idea what your wife goes through on a daily basis!" She then discussed my health with him in depth. And he's now my best advocate to other family and friends. Other family members are getting it somewhat, but not all. Sometimes they just can't or don't want to understand. And I think for those like my dad, who's 86, it's just painful for them to watch their children struggle, so they put blinders on (mentally, physically, or both). Just know you have a safe community family to talk, laugh, joke, cry, rant, or pray/share your vibes with. Though we don't all share the same dx, we are a very diverse group of supporting and caring people, from all over the world and many ages, and we all understand chronic pain. Hugs love and prayers you will find all the support you need, as well as coping skills, as you wander through the community posts! πŸ™‚πŸ’•πŸ™πŸŒΈ

Aug 21, 2016 2:45 PM

I felt like such a baby reading the responses on here, lol I needed a good cry apparently. This is the 1st time I really felt like I've had people that truly understand. This app is a blessing, so glad my partner reccomended it to me. I have been at a really low point of hopelessness and depression. A little about me, I was diagnosed with Hip Dysplasia around 3years ago, turns out I was actually born with it but the doctors never caught it to correct it. Needless to say my joints & cartilage have worn to the point I have bone on bone rubbing when ever I move. I have severe secondary arthritis, cronic fatigue, depression and I'm in pain with every movement my body takes. The doctors say I will need a total hip replacement and since I am so young they want me to deal with the pain as long as I can as well as lose 100lbs before they can do the procedure, which is a large amout of weight for someone whose body does not function well & is in excessive pain. Just trying to get through this and stay happy, that has become my main goal in life right now...to find happiness each day in all this pain. I've become isolated because it is tough to go out and most of my friends/family do not understand. All my life I have been "the strong one" and now I'm at a point where I feel so weak and it scares me because I don't know how to reach out, I'm used to helping people not asking for help so it is a major adjustment. Thanks for listening, it feels good to let it out in a safe environment. πŸ’œ

Aug 21, 2016 5:15 PM

Hell yeah!! I'm with you completelyπŸ‘ a nice punch or a swift kick in the buttocks😊😜

Aug 21, 2016 6:06 PM

It's going to be ok Crystalina! It's just going to take you time to reach the goals needed to have surgery. Breathe slow & deep, and try to list the things you need to do in order of highest priority. Since surgery is a ways off, put it at the bottom of the list. Then take things one day at a time, one step at a time. If you can't accomplish something, so what; tomorrow is another day. It's ok to take breaks. And it's very important to ask for help when you need it, or to say no if it's what's best for you. And allow yourself to cry & grieve the loses you're going through in your lifestyle. It's different for each of us; to grieve & be angry, to accept the"new now" life, and to decide how best to cope and go forward, to not let our illnesses completely consume all our time, energy, and life. You may have weeks of mostly good days, or weeks of mostly bad days; just enjoy the good when you can. Learn to pace activities and rest periods. It takes time to find what works best for you, how to adjust ways you do things to alleviate or reduce pain.

Let me share a little of changes I've made in the past few years. I'm 54 and worked until 2010 when I needed major surgery & a year to recover. That surgery led to more surgery, problems & diagnoses (dx). In 2012 fibromyalgia was officially dx, and I began having more symptoms including vein issues in the legs and pelvis (I wear compression stockings); new dx every year. In the Fall of 2014 I realized and accepted I'd never return to work because I was getting sicker; I was dx with dementia/memory loss in Dec 2014 at age 52. Last year I developed severe imbalance, dizziness, tremors, and several other issues, leading docs to suspect MS so I was sent to Mayo Clinic. Thankfully I don't have MS, but I have a cranial nerve 8 dysfunction causing my imbalance. I now walk with a cane or walker, and ride electric carts in big stores. If I forget or choose not to I'm either so exhausted or lose my balance & nearly fall, or both. I have chronic IBS-C and GERD with a hiatal hernia. In March my GI doc found Barrett's Esophagus, which can turn to cancer. Doc retired and sent me to a GI surgeon who put me on a"Sugar Buster's" diet two weeks before surgery (hernia repair & fundoplication), and told me to stay on it pretty much as I'm able. I lost 10 lb by surgery. I'm a hard core sugar/sweets /chocolate addict; my sweet tooth is as big as Texas! Lol Or I should say I was. Two months later I eat very few unnatural sweets; mostly eat fresh fruits and veggies, and protein. My portion sizes are 1/3 or less than I use to eat, because the stomach surgery reduced the amount I can hold, so I eat 5 small meals a day now. And now (8 wk later) I'm 30 lb lighter, with zero exercise over the past two weeks. I was walking a very slow 1.4 mph on a treadmill for 4-5 weeks. But I had cervical fusion on 8/8 so I'm not steady enough to walk yet. I have left knee OA & chondromalacia of the patella, grade 3, and hip joint OA (both). I can tell the difference on my knees and hips with my weight loss. It's also easier to walk. They did recommend an ergonomic bike because of my knees and hips, but the treadmill was free. Having been on a reduced sugar & starches diet, I don't even miss things I use to crave, and if I eat them it's like "why did i crave this?". I take magnesium, potassium, D3 & sometimes iron supplements, do gentle stretches to loosen tight muscles, and walk when I can. It's hard to restart when health issues crop up and stop me. But I just remember that "slow & steady wins the race!" 🐒I sit and bend over rather than squat or stand & bend. I don't reach up higher than my head because of my spine, shoulders & neck. I wear very good shoes, support stockings, and knee (or other needed) splints/braces. It's just a lot of little changes that will add up to ways to cope better. And it's different for each of us. But you have to find what works for you, and do so on your own schedule, in your own time. Try not to stress it. We are all here for you, and it sounds like your partner is good support too. Hugs love & prayers! πŸ™‚πŸ’•πŸ™πŸŒΈ

Aug 21, 2016 9:11 PM

May I add in when friends say something along the lines of "Sleep? Sleep is for the weak!" and continue to pressure you to push yourself resulting in more pain and despair ; _ ;

Aug 21, 2016 9:24 PM

You know what really offends me? That people that not even know the name of your illness tell you what to do!!! It makes me so so angry that once it even made me almost cry! So yeahh i want to pumch people too

Aug 23, 2016 7:25 PM

All the damn time!

Aug 26, 2016 11:17 AM

I also love it when you think you finally have a friend who may "understand " what you are going through, and you actually try to open up and tell them how you really feel, not just "I'm fine", and they don't really listen and come back and spew off telling you everything that is wrong with them instead. Like, oh yeah, I get headaches sometimes too, yeah, I get tired too, I feel like you too. NO YOU REALLY DON'T !!! I am more than happy to listen to a friend and let them vent, but I also need someone to listen, but please, when you don't have a chronic illness, please don't keep saying that your exactly like me and that you know exactly how I feel ! When I sit and watch you be able to accomplish each daily task over and over again, without giving it one thought. You're not going to "get it" until you get it.

Aug 27, 2016 4:14 PM

The one I hear constantly is "you're too young and beautiful to have that much wrong with you, you seem so normal, You probably just need to lose 10 or 20 bls and you'll feel better"
Me: " <.< really ass wipe?(I dont say ass wipe out loud lol) I've lost 3 inches off my spine in just as many years, that doesn't cause pain? Concidering that how much a "normal" person will lose in their entier life time. But Ok sure what ever you say"

Aug 27, 2016 4:17 PM

@Luladel you're 44!? In your pic you look as though you can't be older then 19! Wth woman whats you routine? I wanna look that good at 44!

Aug 28, 2016 2:31 AM

I had an Osteopath, whom my Mum sees regularly, tell me that Fibromyalgia is just a name the Drs give you when they really don't know what's wrong.
Well! I've never been so insulted. He may as well have said that it's all in my head and that I'd wake up tomorrow and realise its just been a painful dream!

Aug 28, 2016 5:12 AM

Hello Sammy πŸ€— thanQ so much sweetie...😚 thats so kind of u to say! 🌹Hehe 😊 i took that picture when i joined in July! πŸ€— i think its laughter... as least stress as possible... and giving my best with love in my heart 😚
Dressing classy... 🌹ribbons or flowers🌼 in my hair... and middle finger to the world! ⚘

Sep 02, 2016 5:35 PM

I get so sick of those first two comments!!!

Sep 05, 2016 7:51 PM

@Tina, when you say you have headaches, dizziness and a heavy head, are you also getting eye pain as well or is it just headaches?

Sep 08, 2016 6:30 PM

I've also had, "best you be getting yourself better, so you can keep your kids under control. You've been sick long enough." Geeze, Thanks mum!!!😒

Sep 11, 2016 7:33 PM

Lol funny that you said this! To read it, it's comical!!! My thoughts exactly. When I go to my room to lay down or can barely walk up the stairs to get into my home and having a flare... I get asked the question..." Are u in bed already?" You don't look sick, Aaahhh ain't nothing wrong with you, you don't look sick, etc.

Sep 18, 2016 2:48 AM

A colleague started limping n saying oh im sick i cant work n immitating me.. i hate ppl , i have r.a

Sep 20, 2016 1:19 AM

Someone said standing right by me, I wish I could call out and use FML. I turned around and said I'll trade you any day of the week! Because the days I call out are πŸ’―% worse than your worse day!!!

Sep 20, 2016 2:27 PM

I am not in work right now bc of back op (sick leave) but I can total relate... the pain is in your head or there is nothing wrong with her bc she looks good. I can not help it that I want to look good! Little things I do each day makes me feel better. Like makeup, smelling good, new jeans, candles lit, and chocolate oh yea! Lol People look on the outside and have no idea what we feel on the inside! The others just don't care! I was really mad about what a colleague did to Aiz, I would of stuck-up for you!

Sep 20, 2016 3:49 PM

I get that "you don't look like you're sickk" all the time. My mother n law and husband use to call me lazy even though I was severely anemic and back n firth in the hospital. It's sad to say but I would like a really bad stomach flare so that I can lose 40 lbs with the quickness. At least I can get some type of benefit from having this mess!!!!! I had a bad stomach attack Saturday... I thought that I was gonna need an ambulance! Smh.

Sep 28, 2016 7:45 PM

Yep! Because I "hide" my pain and do try to ignore it (not really possible) when I am at my worst, it is often a surprise to those who don't really know me or care to know why I am having an "off day" or week, or God forbid longer.. I don't want pity or help beyond what I ask for (know that when I ask for help, I REALLY need it) I just ask for patience and a chance to know who I am and that I care about you!

Sep 29, 2016 3:18 AM

Oh my gosh yes, the one i hear most is "have you tried yoga?"
Umm i dont think you realize yoga can be painful for someone like me

Oct 02, 2016 8:00 AM

I'm Primary Immunodeficient as well and people have told me I just need to take vitamins! LOL!! πŸ˜‚. How dumb is that?!!

Oct 02, 2016 9:28 AM

@booboo love u thanks Dr 😊

Oct 02, 2016 9:48 PM

If only they knew, they would not ask.

Oct 02, 2016 11:05 PM

*sigh* story of our lives

Oct 05, 2016 4:27 PM

At least once a week I deny myself the satisfaction of throat punching those that deserve it

Oct 05, 2016 8:30 PM

LMAO.... why deny yourself??? After they're able to breathe again and they're fine, when they say they're in pain you can say, "But you look good!!" πŸ˜œπŸ˜‹πŸ˜

Oct 06, 2016 2:42 PM

Or how about "using being tired/in pain as an excuse to get out of cooking and cleaning"

Oct 06, 2016 2:43 PM

Like I really enjoy a messy house? Riiiight.

Oct 06, 2016 2:59 PM

Hahaha omg☺
@chibi I'm a retail pharmacist I've literally said to myself IT'S NOT WORTH THE JAIL Time and stopped myself from hurting peopleπŸ˜πŸ˜…
Once a patient said u r giving us medeicines but have u taken yours! As I was stumbling due to pain πŸ˜•πŸ˜‰

Oct 06, 2016 7:07 PM

I was talking on phone to my son & explained what happened to me at produce stand. (He asked) so i finish telling him how much it scared me as it was coming at me just like when I had the stroke. He sayz so does that mean you won't babysit now. Made me want to cry.

Oct 06, 2016 7:12 PM

Silvrrry.. Am so sorry hun. :(

Oct 06, 2016 7:13 PM

Thanx Mimikay πŸ’•

Oct 06, 2016 7:14 PM

Had a rheumatologist once who told me that she didn't know what was wrong with me but was pretty sure it wouldn't kill me so I needed to just stop worrying about it and let it go.

Oct 06, 2016 7:15 PM

Sorry - couldn't resist. I have a 7 year old nephew - it's all about the farts. ;)

Oct 06, 2016 7:16 PM

Silvery be strong dear πŸ˜™

Oct 06, 2016 7:18 PM

Ugh so apathetic your rheumatologist was mimikay 😐

Oct 06, 2016 7:19 PM

❀️

Oct 21, 2016 11:33 PM

I have a large syrinx inside of the lowest part of my spinal cord. It's been miserable and getting worse for almost 2 years now. Tonight I tried to talk to my fiance about how stressed I am about the upcoming surgery and the cost of everything. He got upset because he doesn't like to talk about money issues and he said "can I just go a little while without hearing about what hurts on you?! It's stressing me out"
I was too tired to sat anything I just locked myself in the bathroom until he went downstairs. I know where he is coming from - he is stressed because he can't do a lot to help. But why should I have to hold it all in just to keep him from being stressed??

Oct 22, 2016 8:32 AM

Syringo - it can be overwhelming to our loved ones who just want to fix us but are learning that they can't. That's why groups like this are so important. They give us a place where we can talk to others who do understand what we are going through. By doing so - we can unload here and give our loved ones a break from being our sounding board. The truth is that unless you live with chronic pain you can't possibly understand what it entails. Personally I am thankful most of my loved ones dont understand as I wouldn't wish this on anyone. (well maybe for a few days on some doctors... Lol)

((((( hugs )))))) be kind to yourself hun. And be gentle with your fiance - don't let both of your stressers control your lives. ❀

Oct 30, 2016 11:22 AM

I usually come back with "you know if you look up TN it's not only listed in the top 5 most painful disorders known to man, but it's nick named the suicide disease. Maybe you should read up on it" I sometimes want to hand out fliers.

Nov 22, 2016 10:31 PM

The worst part is when it comes from doctors! They tell me to take OTC Tylenol, Advil, etc. even though I've tried taking up to 4 Advil at a time and it does nothing! I can't poo-poo the yoga entirely because I enjoy it, but I always explain that it doesn't cure me whatsoever. I know I could eat healthier but I work at Taco Bell and I get free food there and that's how I feed myself lunch most days. Otherwise all I have energy for is heating up leftovers. I exercise plenty but it is only to make my body hardier, and it tends to increase my pain until it goes back down to being "tolerable." I think the one I get the most often is, "You're too young to have so many things wrong with you!" v_v

Nov 26, 2016 3:29 PM

Yesterday morning, after waking up in a strange room at my mom's house and not being able to find my meds...I was sitting on the floor crying. Mom did a wonderful thing and brought me coffee.and then I couldn't reach it. I actually lost it.

Nov 26, 2016 6:33 PM

Every day of my life ugh

Nov 30, 2016 12:53 AM

It drives me crazy at times. I push myself beyond what I should, then I pay for it later. When I say that I am in pain I am told that it is the fact that I am getting older they feel like that too. really? I am only 45 and have had the fibro diagnosis for 13 years now. Migraines, tinnitus, back pain and ancles that I can Hadley walk on don't get me started on how bad my concentration is along with the depression that makes you not want to get out of bed. I used to be a go getter a doer now it takes effort to accomplish anything. It has changed my life and it made it hard to be a working mom. What I get is also a confusing double standard 1st I am told to ask my family for help and stop trying to do stuff by myself, next breath is to act like I don't have fibro so that I am not accepting it, and thirdly how I should go out and start my own restaurant ( hello - stress related disease owning and running a restaurant is not smart for me!) it makes me feel alone πŸ˜•

Nov 30, 2016 1:37 AM

Jlc it is soo hard having an invisible illness especially when people don't want to understand it. So many people think they're helping with the advice they give you but don't realise how hurtful it is.
Sending you { { { BIG GENTLE HEALING LOVING HUGS } } } XX

Nov 30, 2016 4:21 AM

I get the "oh! My friends friend had that! But she's cured now because either A) had a baby. B) ate healthy or D) excercised...
Cured... completely... from an incurable chronic disease...
I ask them what they had? They don't know the name of it BUT " it's the same thing " lel *head butts wall*

Nov 30, 2016 4:38 AM

I saw this and it's exactly how I feel most of the time even with family so most of the time I don't say anything to them, which in turn makes me feel worse but since I've found this app I've been able to say what I need to say which helps me process my feelings better and I actually feel like I have some support from people in this community without judgement and comments that hurt more than help!!!

Nov 30, 2016 4:56 AM

Thanks Mimikay!! πŸ’– Needed your Fart
πŸ’– Meme!

Jan 09, 2017 10:07 AM

Yes you can AmieLeBlanc

Jan 24, 2017 5:55 PM

Sometimes I feel like saying "Oh you have a broken leg? Walk it off" whenever they tell me to "walk off the nerve pain"

Jan 26, 2017 3:23 AM

Ooooooo! Those people make me sooooooo mad. I know they mean well I know they're only trying to help I know they want to be Bliss kitten optimists, but sometimes you just have to go all Cartman on that noise!

Jan 27, 2017 11:18 PM

Hell ya. Or...Don't think about it, you'll get better! My reply... Exactly, I've stopped thinking about it cause I may NOT!

Jan 29, 2017 12:58 AM

I have been try to work at a call center the last few months. I ended up hirting my lower back andhave been off work for 2 weeks I cant tell my mom cause she will say i need to suck it up and my husband's family keep asking if i lost my job yet or good job at working see i knew you could do something. I am in so much pain i just wish i could chop off the bad areas but the i realize i wouldn't have much left.

Jan 29, 2017 1:53 AM

Oh no Wendi, I wish there was a way to help you more but I've only got advice to offer....I can see there's really no point on trying to explain how you feel and how much pain you're in because you've already done that, some people just can't comprehend how much pain actually completely drains us....sometimes I would like them to actually feel what we feel just so they can get a little understanding of what it really is like to live like us but I digress sorry....have you given then the links for the spoon theory and the "letter to normals"? It probably won't help much if their views are quite strong or they may try to understand for a little while the go back again.
The only other thing to do is to say that they are not suffering from the conditions you are and they have no idea what you go thro even just to get out of bed in the morning and sometimes there is no pushing thro with the pain and the fatigue that comes with it.....that when they see you for the short periods of time you're there you're pretending to be well, hiding the pain from them but when you go home you're in soo much pain you can bearley do anything.
Or that as they don't suffer from the conditions you suffer from they have no right to judge you and that their judgments only make you worse then walk away or hang up and leave it at that.

It is your life to live so please be good to yourself and do what is best for you not for everyone else.

I hope your back heals soon for you and that your pain eases so you can have some relief.

Sending you positive vibes and warm healing hugs xx

Feb 24, 2017 5:13 PM

Im glad there are others here like me. I get the same kinds of comments frequently.
My favourite is " you look great, you dont look at all like you're in pain".
Ummm, what does a person pain look like? Wtf....seriously πŸ™„

Mar 05, 2017 6:58 PM

Ugh what gets me most is on good days I start believing them and that it's in my head and I'm just a wimp 😞

Mar 12, 2017 9:11 AM

Hell yeah! I have a few tee shirts that deal with fibro. Some funny, some sarcastic and some just for awareness.
I get awful looks when I park in a handicap spot or use the motorized cart in the market.
The worst are the family and friends that have said those things.

Mar 14, 2017 4:01 PM

Oh yeah! So hard to deal when the pain is bad and people don't understand! After 24 years of this constantly I'm trying to accept this now as my 'new normal'. It's hard to do that when people tell you you're giving up.

Mar 14, 2017 4:27 PM

Sprowett. I hear ya. It is the hardest thing to hear when people tells me that I am giving up. When really I am just trying to find a different way to deal

Mar 14, 2017 4:30 PM

Sezzy. I agree . We try to please other people and hide who we are . If they don't want to understand then they won't. It is hard to accept but it is what it is

Mar 14, 2017 4:32 PM

I wish we can respond on people's post individual instead of it strolling way to the bottom. 😐 that's my only issue.

Mar 14, 2017 7:35 PM

I have bosses say that crap to me all the time..... I already don't like authority, so I have my middle finger ready when they leave the room

Mar 15, 2017 1:17 PM

Cougarlicious. Wow that was wow lol. So fits a lot of people which is very sad . That we have to keep it all in . So we are not being judge

Mar 15, 2017 2:50 PM

Who would understand or take the time to understand?
It's not an illness that can be seen.


I will say I'm thankful for that aspect bc I don't do pity parties . I don't like explaining my illness .

I am in Aw that I have joined this forum.
I will say from the beginning I felt at home.

Mar 15, 2017 3:05 PM

I understand what you are saying. If people don't want to understand then we can't make them. But I got tired of explaining to people so I keep to myself

Mar 15, 2017 3:58 PM

I don't explain . I don't talk to people about it. There is a total of 7 people who know my illness. Well, the countless people on this siteπŸ˜‚
My parents do not know if my illness.

Mar 15, 2017 4:03 PM

Great poem thank you for sharing.

Mar 15, 2017 4:57 PM

There are some people who take the time to try and understand but even then they don't get it. I do appreciate those who do try but they are very few and far between.
Sometimes if needs must I explain to people but normally i just put on my smile and say I'm fine.
The hardest part for me is when I'm having a really bad pain day and i have to wear a lidocaine plaster on my face....It's a big white thing that covers my left cheek so if i go out there's no getting away with it.... I get asked what have I done to my cheek i now just say oh it's nerve pain and this stops it hurting too much and leave it at that!

Mar 15, 2017 5:03 PM

It goes to show how appearances matter. It's the wrong thing yo do bc you miss out knowing someone.
I enjoy people and I always welcome their point of view without prejudice.

Unless it's someone who gives me bad vibes or if I look at their eyes . I can see a black heart .

Mar 15, 2017 8:16 PM

Everyone is making great points . 😊

Mar 20, 2017 5:20 PM

The people at church often ask.if I am better now. (recently had knee surgery). I just say "I will be....."

Mar 20, 2017 7:55 PM

All of the time.. Thank god I'm not the only one..

Mar 23, 2017 9:32 PM

I wish i could keep that poem and refer to it every so often. It speaks volumes to all of us!

Mar 23, 2017 10:04 PM

How about..."You get sick a lot." Pain is not an illness, whatever it comes from!

Mar 24, 2017 2:42 AM

Alijoy if you take a screenshot of it and crop it you can have it on your phone's home or lock screen so you'll have with you all the time or you could try to Google it x

Mar 24, 2017 11:02 AM

Sezzy....oh my god, i didnt even think of that!
Thank you 😊

Mar 24, 2017 4:59 PM

Alijoy I am sorry I misunderstood your question.

Apr 12, 2017 6:20 PM

I'm so tired of fighting this disease is ruining my life but when I read these post it gives me encouragement not to give up it's not in my head.

Apr 12, 2017 8:39 PM

Ah hahaha! More like slit their jugular! 😳

Apr 14, 2017 7:56 PM

I was told the other day by someone I've known for 3 years that 'I am a disability'. I have a disability. But I'm stI'll a person who has a brain and can think plus I have feelings. She talks to everyone like she's better than you are.
I'm a non-violent person but it took everything I had to keep from putting my cane upside her face. Those words hurt like a knife stabbing me. I hide the amount of pain I am in constantly. I do everything I can (the list is a lot shorter than it used to be) but I never thought that I would be considered a disability which made my feel she thinks I'm worthless.
I've heard nasty things from doctors, nurses, and other people. But what she said in her condescending tone is one of the worst. I try very hard to hide the amount of pain I live in and most people have no idea.
Why do people think they are allowed to make nasty comments to us? We are suffering in pain daily. How are they better than us?
I'm new here. Hope my next post isn't such a downer.
Happy Easter to all
Beth

Apr 26, 2017 5:14 PM

"I have back pain too" I want to say that Pain is different to different people. We have different thresholds of pain. My back trouble started in high school and now at age 48 I judge and see my pain differently. I used to say my pain was an 8 or 9 on the scale. I have had to dial that back as the pain has become more severe. So what used to be an 8 or 9 is now a 4 or 5 as I have experienced level 9 and 10/unbearable pain. I say this with much fervor Pain sucks!

Apr 26, 2017 5:22 PM

Thanks. I'm trying to ignore this but it keeps coming back in my mind. I wish I had said something at that moment, instead I didn't do anything but keep my distance for the rest of the day. People that don't live in chronic pain do not get it or they don't care. I hate mean people. Thank you for replying to my post. You are amazing.

Apr 26, 2017 11:36 PM

So much yes to all of the above.
I hate when my family tell me I'm giving up when I don't show any interest in trying some sort of new treatment they saw on the internet.
I am a 38yr old single mum of two, who still works (attempts too lol) and at the end of the day I am in so much pain and so exhausted from having to be so 'ON' while at work but have to push through only to be told I'm not moving enough or it's like I don't want to help myself get better. Or my favourite 'Stress less' Totally I'll get right on that, you going to pay my bills?!?
The fact that I have been poked and prodded by Drs for two yrs means nothing.

Apr 26, 2017 11:38 PM

Sorry that was a bit of an epic rant. Haven't really commented before and then I do it's huge.

Apr 26, 2017 11:43 PM

Don't apologize for ranting. We all need to do it. I'm sorry you're in such a difficult situation. People that aren't in our shoes can't understand what we are living through and with. Feel free to rant whenever you want. Gentle hugs for you

Apr 27, 2017 6:53 AM

Yup you get your makeup on and hair done, try to put on the happy face and people think you're just fine! I also have gone to the doc in my sweats and no makeup so he can REALLY see how I feel. 😑

Apr 27, 2017 6:58 AM

Made the mistake last time i went to docs..make up..hair up..but washed and real clothes...did not take me seriously at all

Apr 28, 2017 11:56 PM

I find that complaining helps me deal with everything. I think that because of that my friends are more understanding. I do get a lot of guilt however because I feel like I'm weak for complaining instead of pretending I'm fine. But I like not being invisible. Idk I guess it's double handed. I'm taking a medical terminology class, had to stay after and ended up talking to her about all my medical issues I'm working on a diagnosis for and she called me a hypochondriac. Like yes please tell me how I talked myself into believing I've had constant pain for 7 years. That makes sense.

Apr 29, 2017 12:19 PM

You aught to refer her to any article for fibromyalgia or chronic pain. Talk about lack of compassion. She just does not get it & yes this is your place to vent. I find the support here wonderful after an honest venting session on my part. We have to know we are okay in what we experience. No one else can discount our experiences. Know there are over 100,000 + people on this site who share many of your pain experiences & talk about it on this site.😊I am thinking of you in prayer & sending gentle sensitive ((hugs)).

Apr 29, 2017 7:08 PM

We all need to be validated, but it is impossible for a non suffer to ever fully understand. It is like trying to describe what it is like to ride a roller coaster to someone who has never seen one.
My mother had fibromyalgia before it was given credence by the medical profession. I tried to understand and be helpful, but I would loose patience when she would take hours to get ready and was constantly taking about her health. She had a flare for the dramatic and i sometimes wondered if she was seeking attention. SHAME ON ME!
Call it karma, but I was diagnosed three years ago with fibromyalgia and other health issues. Now I finally understand.
Sorry Mom.

May 21, 2017 2:55 AM

I 'Throat Punch' people all the time in my head every time I hear one of those phrases Lol

May 21, 2017 2:44 PM

Haha yes!!!! I want a throat punch t-shirt

May 22, 2017 7:05 AM

Hahaha. My kids used to call it the "ridge hand". I'd like a t-shirt too. 🀣

May 22, 2017 2:00 PM

ah hahahaha! Oh hats hilarious joey!

May 22, 2017 2:34 PM

What do you do if it's your spouse is the one you want to throat punch?? I have a lot of issues. But there a few symptoms that seem to slip through the cracks of all of them. Doctors are baffled. And say "it could be a combo of all of them could be causing them because never seen these diffrent diagnosis together before" which could be true but I don't think so. I have seen additional doctors and they shrug shoulders. My wife is just "stop you have what's going on. You don't need to look further"

I'm not trying to look but solve. Does that make sence? But Knowbody will stand by me to look at things as well to rule out and say it's this too.... Or it is nothing else.

May 22, 2017 2:55 PM

Overcomer it does make sense. Nobody knows our bodies like we do. We are highly aware when something is wrong. It's just trying to find someone that will listen.

May 22, 2017 3:32 PM

Its usually my spouse I wanna punch haha! For real though, our spouse is always gonna say or do something to start an argument, that's ok. They don't fully understand & how could they. So I've learned to either ignore it or inform him of his hurtful comments. He always apologizes & is more careful.
Definitely keep researching! I do daily! We have to. We know our bodies best & should never settle for a diagnosis we're not comfortable with. If needed keep looking for more Drs

May 22, 2017 4:54 PM

Thank you Frustrated and Joey311. It does. Help sssooooo much to know others have the same thoughts as you do. Blessings to each of you and all of you here.

May 23, 2017 10:59 AM

I'm glad we all found eachother! Helps me re-focus energy on our healing πŸ’–

May 23, 2017 1:19 PM

I think about throat punching someone almost daily!! Lol.. As if we ignore it it will magically disappear l

May 24, 2017 6:14 PM

Yes please punch them for me to...lol

Jun 08, 2017 5:29 PM

I used to think I was starting getting crazy for being furious at comments on how good I look, and how I always have a good face... By now I just answer... Come on all that I am missing is having also a bad face? No... Having Just a bad back and led and belly and so on is just bad enough lollll thanks for making me fell... Normal after all...

Jun 08, 2017 6:13 PM

Although I'm still in diagnosis limbo, I'm glad I found this place where people understand what it feels like to feel terrible most of the time (and the enjoyment of an imaginary throat punch to various deserving people haha).

Jun 12, 2017 3:48 PM

Yesterday I was in excruciating pain and my younger brother (21) told me "it's just negativity you need to learn to breathe through it and let it go" I wish it was that easy...

Jun 12, 2017 4:44 PM

I second that. Breathe through it pffft.

Jun 13, 2017 1:19 PM

My partner is uncompassionates when it comes to my pain as well as others out there have problems with theirs,sends my stress through the roof, I started swimming today and realise its good to have space away from each other,now I will have art group wednesdays and swimming thursdays and next month hopefully dbt sessions for a year on fridays :)

Jun 20, 2017 10:09 PM

I hate when people tell me "I have similar pain and I'm doing okay." Well, good for you. People think all types of pain are the same and they're really not...

Jun 23, 2017 4:20 AM

This makes me SOOOOOOOOOOOOOOO MAAAAAAAAD. ATM My fiancΓ© & II are going through a patch where he is trying to say that all my flares are "Selective" just to get out of doing chores!! Well that's
BULLπŸ’©!! I have FULL BODY RSD and have had it for 18 yrs as of May 28th!! But it's been Full body for Approx. 11 of those yrs. the first seven years was "Glorius" in that it ONLY affected all 4 limbs!! Does anyone have any ideas on HOW to counter his arguments??

Jun 23, 2017 5:49 AM

Every single day

Jun 23, 2017 2:42 PM

@024 I hear you AND THEM SOME!! I have FULL BODY CRPS!!! My BF is acting like a di*k and wanting me to be a "traditional housewife‼️

Jul 24, 2017 7:45 AM

I hate when I have a migraine and people say "oh, it's all in your head" or "walk it off" when moving just makes it worse, there's even someone in my class who thinks I "fake my pain for attention" even though I'm the type who keep their pain to themselves and want others to think nothing's wrong because the people in my grade either wouldn't understand pr don't try to understand.

Jul 24, 2017 7:47 AM

I can only imagine this is what I look like to my friends

Jul 24, 2017 5:12 PM

Oh my gosh! Like I'm so sick of hearing all of that. It would be nice if people who have family members and friends who live with Chronic Pain 24/7 would take the time and learn about that person's Disease wow attitudes would change and those " Just ignore it" will no longer exist.

Jul 25, 2017 10:14 PM

Ha yes all the time and the best one is : you need to do something keep your brain busyπŸ™

Jul 25, 2017 10:24 PM

Tired of that too even went to Chronic pain course they said to distract my mind from the pain and it won't hurt anymore geez

Jul 26, 2017 8:11 AM

How do you distract your mind when it's foggy too??? Lol

Jul 26, 2017 9:51 AM

As I've had more expirence with chronic pain, I've realized how unempathetic or thoughtful a lot of people are. I had noticed it before (with my depression, ptsd and anxiety) but it became really evident when my troubles were physical rather than mental. People can't relate to something they haven't expirienced or been in constant contact with (ie: emotionally healthy relationships with friends)
It fascinates and confuses me because I'm generally pretty empathic and I recognize that everyone has different expiriences with the same/similar illnesses that I have. I also recognize that people will expirience things I never will. But that's my expirience.

Jul 26, 2017 9:52 AM

Distracting the mind only goes soo far, if the pain is really high and intense I find it extremely hard to distract myself and only sleep helps

Jul 26, 2017 12:40 PM

My hubby always tells me that my emotions clouds my judgements .

Jul 26, 2017 12:43 PM

@Astarte24 I know how you feel. I also have ptsd. Anxiety and depression on top of bipolar 1 and now I have doctor's appointment tomorrow to see if I'm also add. Which I think I am plus my family thinks so. πŸ€”

Jul 27, 2017 3:56 PM

Sitting in a folding chair in the kitchen, (because my knees, hips and back hurt so much) making my daughter and husband their breakfast and she's yelling at my and telling me I'm not listening because, if I was listening I'd give her the same answer that I did earlier and just because she voiced her opinion, I don't always have to change my mind. ....on and on....finally I looked at her and said, I need to go to my room for a few minutes before I break this coffee cup over one of our heads......I have NEVER said anything like this before, but I'm in sooo much pain and my heads now splitting ( had a TIA stroke 2 weeks before so I'm supposed to be in a no stress environment ) She turns on her heels and tells me I never listen and how dare I threaten her. (Roll eyes here, she's rarely if ever been even spoken to roughly )
I finish breakfast and lunch and get everyone out of the house and finally lay down and cry. So maybe not throat punch, lol unless you can punch with a coffee mug.

Jul 27, 2017 4:18 PM

Oh ElentraVitra, I'm soo sorry that are in soo much pain and only 2 weeks after your stroke that you're having this stress, sometimes those closest to us don't even realise what they are saying or how they are saying it, maybe your daughter has forgotten that your not meant to have stress. Maybe when she comes home you sit her down and talk to her about how she's treated you and how it made you feel. You have had a major life changing thing happen and if she doesn't think about what and how she talks to you it could set another one to happen.
If you feel it will be too stressful for you to sit and talk to her maybe write her a letter explaining it all or speak with your husband and see if he would talk to her or sit with you and support you while you talk to her, that he could be a mediator between the two of you?

I'm sending you lots of positive vibes and warm healing hugs xx πŸ’ž xx

Jul 27, 2017 5:07 PM

Thanks so much! It's hard getting used to this new life. I've had a lot of physical pain over my life, but my brain letting me down is something new. I'm not sure how to explain to her that something I'd been proud of, was now scary and letting me down. Shot, I don't know how to handle this yet....I need to try and talk to her calmly. I really appreciate your thoughts. Thank you!

Jul 27, 2017 6:11 PM

What may help is if you write down a list of things that you want to talk about maybe with a few pointers so you don't forget what you want to say.
Maybe write a list of rules that you both need to abide by likeno interrupting when someone is speaking, listen to each other and try to put yourselves in each others shoes, no raising voices and so on....
If you did feel that it could become a heated discussion then maybe try to have someone to mediate like your hubby?

It really does work if everyone is open and honest and respectful to each other.

I wish you the best of luck and I hope things sorted xx

Jul 28, 2017 11:30 PM

I agree with you Sezzy and ElentraVitra i am so sorry you've had the Tia & now have headache. Also that you are grieving loss of some brain function. You sound like you are getting some things back & I am praying your confidence in your exceptional mind come back too. Now I am going to be devil's advocate about your daughter. I first think she must be a teenager as her behavior sounds like classic teenager. She is doing what she is supposed to do at this stage in her life--be self focused & challenge authority. Sezzy suggesting ground rules is a good idea though--no hitting on those who are ill. Secondly, I wonder if your TIA & serious health problem did not scare her terribly & not understanding her feelings lashes out at you. Life is messy from my experience & so letting go of any expectations on behavior (yours & their's) May help relieve some stress. You know hubby & daughter both love you though it may not look that way now. You are so ahead of the game as you are already processing feelings at only 2 weeks out. I meant this post to be supportive for you, I do get the difficulty in adjusting to change in body functions. I've lost so much with this fibromyalgia. Be sad be angry then be hopeful. Life can give the most surprising gifts in the midst of difficulties. My heart is with you. Find rest & peace and heal. My prayers are going out for you.

Jul 30, 2017 7:22 PM

Absolutely. I have a co-worker who has migraines and fibro. I have both plus additional neck shoulders injury with chronic pain. She misses a lot of work, gets a lot if sympathy from everyone. I try to work whenever I can, and no notice is given to me. If anything the attitude is my pain can't be as bad as hers. So tired of the comments.

Sep 21, 2017 10:34 AM

Some people just don't get it!

Sep 25, 2017 6:01 AM

I hate that. I also hate when they tell you it is all in your head.

Sep 28, 2017 3:08 PM

And lets not forget that know it all that advices." Oh just push through it, eventually you wont even notice the pain"....ahhhh, id like to push my fist thru her head!

Oct 02, 2017 8:24 AM

The new one that I hear is "Fake it till you make it." If they only knew that I have been doing that for years and that's how I get through talking to people like them. The thing that really upsets me is that it's coming from some of my extended family members!!!! I just want to bi**h slap all of them!!
I say, stand in my shoes( If I could get them on. Lol), for only 1 hour, then tell me to " fake it till I make it." They wouldn't last 10 minutes before begging to change back. Why are people so insensitive?

Oct 16, 2017 8:05 PM

All the time. I've been dealing with chronic pain since I was a child. I've heard it all and I've tried most of it.

Oct 17, 2017 5:21 PM

Lol, bit*h slap is right! Glad we have a sense of humor, otherwise I would commit ******!

Oct 28, 2017 10:15 AM

Yes, this is bad stuff that I also deal with. It's a very complicated personal issue

Dec 05, 2017 4:26 AM

At the beginning of this journey. I had lost a family Doctor at this time my knees were bad. At 50 they had to be replaced. I went into a walk in clinic ,because I didn't have a Doctor. I bought myself a cane and was hobbling around on it. I can't remember what I was there for at the time.
The first thing that came out of (This) Lady Doctor's mouth was what are you using the cane for. I told her my knees were shot. She they proceeded to tell me that if a Doctor didn't order it I should not be using it.
I explained that I was on the list for my knees to be done. Then being the great Doctor she was told me to eat less and I would lose weight and my knees would stop hurting also neck. Well I am my own advocate. So I proceeded to chew her a new one and told her she probably should have stopped being a Doctor until she learned something about compassion, which she probably lost about 20 years ago.
She then said I would never take you as a patient.
I fired back and told her that if she was I Doctor , I didn't want her.
Here is the thing I know they have to deal with people that are looking for drugs, but i am not one of them. I resent the hell out of being lumped into the lowest common denominator.
There are bad Doctors out there.
Still fighting.

Dec 30, 2017 7:03 AM

Family

Jan 02, 2018 12:24 AM

Right! So glad it's not just me.

Jan 04, 2018 6:50 PM

I had someone tell me that their dad knows someone with Fibromyalgia and all I need to do is take vitamin B12. I wanted to punch him. I had to calmly explain to him that I’ve already tried literally every OTC, supplement, and prescription possible and nothing helps.

Jan 04, 2018 7:12 PM

I'm so tired of people say "just take Lyrica"

Jan 29, 2018 7:15 PM

My sister in law is on a vitamin d kick for a while now. I don't even bother discussing anything with her because all I hear is that I must need more vitamin d.

Feb 04, 2018 4:32 PM

Haha I actually did punch someone once... I was real mad about it

Mar 15, 2018 2:22 PM

'Just take some painkillers and think positively - I have back ache sometimes too' I will scratch your eyes out 😾

Mar 15, 2018 5:09 PM

TiredInPainNInsane, yup I have had a GP (if you’re American, this is our version of Private practitioner), tell me it was all in my head, never went back to her...she also said she would refer me back to my Cardiologist, he never received it!!

Can I add
1: β€œEverybody gets depressed sometimes” Told to me by my Mum who is an RN and so should know better!!
2: β€œI was up at 0700” (when I lived on my own and slept till lunchtime/afternoon because of pain and fatigue) also said by my Mum

May 06, 2018 7:14 PM

Yes. Especially having something with the name Chronic Fatigue Syndrome. I’m just tired and need more rest.

Jun 16, 2018 11:07 PM

I know this post was three years ago but I have to answer and the answer is yes I definitely would come it’s like my family telling me to snap out of it get over it with my depression can’t do that or your cerebral policy is a fake ass apology is not your born with it or your legal blindness is a fake you think I want to be legally blind you think I want to have soup at Halsey you think I want to have chronic back pain so yes I would definitely wish I could punch someone in the face but thanks for asking

Jun 17, 2018 9:11 PM

My dr told me it was all in my head!!! I told them sarcastically that I'm deaf so I can't hear these things in my head!

Blah.

I do find exercise helps me keep my sanity. I found an exercise app called "Fibromyalgia & Fatigue Fitness". It's helping some.

Jun 24, 2018 10:42 PM

β€œYou should read this book...”. All time favorite

Jul 09, 2018 8:50 AM

Omg yes all the time when they say something stupid
I asked on person if if they found a cure for her chronic illness, she looked at me puzzled and I said oh shit they don’t have a cure for being a dumbass yet either and I walk away leaving feeling very stupid for her rude ass comment 😳 not going to lie I felt better πŸ˜‚

Jul 14, 2018 11:19 PM

😏 yes

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