I wish people would understand what I'm going through! This is NOT due to lack of trying, my pain will NOT get better, I work hard everyday to try and get my old life back! I didn't cause it, I can't cure it and I certainly can NOT control it. And I'm scared to tell everyone how I am, they want to hear "it's getting better" but what if it's not, what if it's getting worse. I'm doing okay. Not great, not bad, okay. And that is okay.
Anyone who does not experience the pain that we do, will NEVER understand it. They try to sympathize and we have all been told we have the power to make ourselves well with positive thinking and proactive care. It's true that some people do have the ability to push through but most don't. Please don't get down on yourself. If you feel like crap, say it. Why should you not say how you feel to make someone else feel better???? Hang in there, hon... We're all with you.
It's okay becca it happens to all of us. Just today my mother got me to get out my wheelchair to cross the road because she said the other side was to steep. From the car journey I was already fighting off pain induced shock but i got up and stayed shuffling. But then she went way too far for me and she knew it. She was trying to force me. I got stubborn and i nearly collapsed. In the car I had passed out for crying out loud. I should probably mention this was for a hospital appointment. Anyway the point is Stay strong, be stubborn if you need to and do your best to explain it to them
I hate the days I feel ok and people see me and wonder why I can't work but they don't see me the suffering the other 5 days a week when I struggle through and the special days to my kids that I have to miss because I can't even get out of bed. I am fortunate that some of my doctors also have migraines(not as frequent though) and are sympathetic to how I feel.
I have friends like that too. They tell me that if I lose weight I'll feel so much better and in the last year I have lost almost 100 pounds. I don't go to family parties or gatherings of friends. It has gotten to the point that I don't even get asked any more. I've lost friends, lost my lifestyle and my fun and joy in life. I used to own horses and rode since I was 8 years old. To this day if I am around horses it transports me to a place of peace. Having my hands on them and grooming them is painful for days after but while I'm doing it, I'm so focussed on the horse that my suffering does decrease. I just have trouble finding a day that I can have the energy to go to the stables.
do you know what I understand? That nobody understands. They have no clue, unless they have this illness themself. I have friends or family ask me all the time how I'm feeling. I now resort to lying cause it does no good to tell them that I am in constant pain. So I just keep it to myself and cry lots cause I feel so alone. And I see no end in sight either. Can't take narcotics and OTC meds don't do anything for pain. So, I must keep pushing on. I need to find that peaceful spot that you have found alwayzinpain! I am so happy you have your horses! I have a kitty that loves me and follows me around. When I go lay down or go to bed I ask him if he wants to go to bed. He always follows me and lays down. Animals are wonderful! I thank God for that!
I started running about 2 years ago before I had this illness, that was my peaceful time, my own time to think, when this happens to me I'm in too much pain to run anymore. I have a stable down the road my close friends own it. Animals seem to sense that your hurting... Maybe I should try the horses out?
I have a dog, they're wonderful and she follows me everywhere, guards me and comforts me. The problem is that I'm joint owners of her, so I only get her (Jazz my dog) sometimes maybe 2 months of the year. I wish i had her more and when she passes I dint know what I'll do. I probably get another dog but no-one could replace her
I think it's hard for able-bodied people to understand the concept of pain that doesn't go away. For most people, pain occurs because of something they did - they worked out, their muscles are sore. They stubbed their toe, it hurts. But the pain subsides. It doesn't make sense to them that pain can exist outside of that spectrum for an indefinite period of time and for reasons other than something we did. I didn't do anything to cause myself pain. It just hurts and it will continue to hurt. When people send me links to things like "stop eating this and your chronic diseases will go away!" I get upset, but then I realize that it's because they don't understand. And I don't really have the energy to correct them.
I had a horse growing up and rode up until I went to college. They are special animals - incredibly intuitive, gentle, strong, wonderful animals. I really don't know the words to describe them but when I'm at a barn, I am happy.
Becca, the best advice I know to give you is to be honest and tell the truth. Holding in your feelings & trying to put on a good front for benefits is actually causing you more stress ... more stress equals more pain! I use to cover up and hide how I was feeling, but earlier this year I hit a crisis point. My dad was in the hospital, expecting me to go home with him and assist him & my step mom. It was all I could do to function... Eat, sleep, rise... I told them no and why, all while I was crying. Surprised me, but they turned and asked my sister. The relief I felt was "releasing" and I don't withhold how I'm doing anymore. I also don't have as intense pain as I was before I began being honest. Ive learned to say no & its ok to put me first when I need to. You may not get the same response but you have to do what's best for yourself. Praying you'll have more good days than bad over the next year, as for all in our community!
Becca, I understand what you are saying at least from my perspective. I think these family or friends or maybe both think they understand. They probably think they are giving you what you need. One thing is for sure. For the most part, they love and care for you. Everyone thinks they understand something or someone for the most part. We in this forum may think we know what one of the others is feeling or going through. We may feel that way because we have similar experiences. But when we discuss our pain and how it is effecting us, the variables are always different with every person. Each person has a different disease, insurance, doctor, access to medication and healthcare, different income, support system, coping skills, mental health status. All these variables change our levels of pain and our ability
Part 2. Accident pressed add. And our ability to cope. Our ability get relief and the things we need and to have people to assist us. So I could never understand fully what you are going through unless you have sat down and really detailed all these factors. Because to have true empathy, to put ourselves in someone else's shoes, we need a strong imagination and we need to imagine all those details to see how each detail can really effect your pain and what it must be like going throught it.
So with that in mind, I say you tell those friends and family of yours how you are really feeling. Not to put the blame on you, but how can they imagine what you are going through if you say you are ok. That statement actually stops them from having to imagine and understand. They can only support what they know. If you are like me, you are a giver and not a taker. I usually would give people gifts, cards, ect. But I did not like it in return. I liked when I was able to help people with their problems but I would never share my problems with them. So maybe you feel it is kind to share your thoughts. But remember if it were your friend or family member, you would be truly sad if they didn't think they could come to you. I am probably way off point. I do that. I am going to go now. Before I start sounding more lame than I already do.
@profiler - you made perfect sense and didn't sound lame at all. I have to remember that people can't read my mind and that I have to vocalize my needs, especially with my family. I'm still learning... It helps with my stress levels when I feel like I was able to "get through to them".
Hi everyone, I am new to this site. I suffer from chronic pain; fibromyalgia; herniated disc; had surgery for prolapsed bladder and now it's prolapsed again; have constant lower back pain that radiates down my left leg; petafemoral syndrome in my knee.. Two years ago I got a big bump on my head and it was itchy. I asked my husband to look at it and he said it was fine. Three weeks later when I dyed my hair out came a huge knat... Since then my head has been itchy all the time and gets like a crust on it. I have been to 5 dermatologists and all the shampoos, creams etc. they have given me don't seem to do a thing. Now it has progressed to my body and sometimes the itch is so bad I can barely stand it. It has gotten to the point where my husband and I have split up because he says there is nothing in or outside of our house that should be bothering me so the doctors diagnosed it as a "psychiatric" condition. I am 57 years old, this is my second marriage and I have dealt with pain since 1993. I think I know when something is wrong... do any of you have itchy skin? If so what do you do about it? That coupled with the pain has gotten me to the lowest point in my life. I can barely look after myself and that's not the kind of person I am.
Hi Vicki, I can't say I have the itching you do. I've identified mine as due to either allergies or anxiety attacks. When it begins I try to figure out if I ate something or used something I'm allergic to; if so then I take benadryl. If not, I determine if I'm anxious about anything; if so I take anxiety med. I get tingling & itching that travels all over my body from both. Start keeping a journal and see if you notice any patterns.
I can relate to most of your other issues. But I have PF (pelvic floor) dysfunction & congestion, rather than bladder prolapse, due to a mass in 2010. It's taken me 4 years to get better, enough to function daily for myself. I'm 53 and I've learned to put my needs first, then help others when I can. Its ok to say no to others, and its ok to take time for you! Today's one of my bad days, as getting through a cold I've taken a migraine. My pain went from a 3 yesterday to an 8-9 today. But get through it, I will.
I could be nasty & ugly like my mother in law, whose doctor told her to "get right with God." She had a stroke & was placed in a home. Now she hates the world, everyone & everything in it, because as she put it, "They've stolen everything and threw me in here with poor people. I'm the only one paying for care, and I get poor people food." That's what her doc said what she did.
We all have bad days & really bad days. If your husband wasn't willing to stick by you then he doesn't deserve you. I'm sorry for the emotional pain he's caused. I'll say a prayer for you, and may 2015 bring you a much better year!
Viki, yes, I know itching like yours! I have Plaque Psoriasis in addition to my pain issues. I tried UVA and UVB treatment, something called X-Trac for my scalp and while that gave me a fanastic tan, it only helped a little bit with the itchy patches. My worst one were on the back of my legs and when it got real bad they were open, bloody, oozing sores. I say "were" because my dermatologist put me on a drug called Enbrel which I have to take weekly via sure-click injection. I've been on it for 6 months now and my skin is 95% clear and the itch is just about gone (except for my paresthesia which is something totally different). When it gets really cold and dry, I do get a little itchy patch on my right hand, but it's not even noticable to other people. My dermatologist had to do a biopsy from one of the plaques so we could get a clear diagnosis. You may want to talk to your dermatologist about that. Oh, and my first dermatologist thiught it was contact dermatitis - if yours doesn't want to do a biopsy, change doctors (again)!
Hi guys. My name is Jennie , i am 28yrs old and a single mom of a beautiful little girl. This is my first time ever speaking about this at all. But after reading all your comments i just cant believe how much your stories are exactly my story. And frankly im tired of feeling this way. Ive pushed so many people (actually everyone ) away from me ,including my daughter. That's wha hurts the most. I have SLE, Fibromyalgia, severe migraines, IBS, Anxiety, Depression, Arthritis, and think thats the whole list. Its long eenough right? I had to move back in with my mom and ithas been a MAJOR adjustment. Especially because there are so many kids here , whereas i had an apartment 3 bedrooms for just me and my daughter . Its been a year since I moved in and i still haven't aadjusted . Nobody gets that im tired, they think im faking and lazy. then if i do have a good day (in terms of pain/energy ) they they assume im better all together. What's worst is nobody i know has even heard of the illness i have! !!people ask how im feeling i just say I'm okay cause i don't want to be that person that's always whining and complaining. So ultimately i stay locked inmy room alone to to avoid it all .
Jennz, so glad you decided to come here. You have enough stress going on that you need to vent. I have fibromyalgia, depression, anxiety daily (over nothing, had it my whole life) and migraines. My family doesn't get that I ache and suffer 24/hours a day...they just don't get it,so I too tell them that I am fine when obviously I am not. My fibro has come on full force just this winter so I am not taking this easily. I cry a lot and come here to talk to others who have the same problems. I am so glad you decided to come here. There are lots of us who will always listen...plus give some helpful advice.
I am so sorry to hear that you are suffering physically and mentally. I, too, suffer from many things. I had an accident 17 years ago and it took had to have several surgeries to get my foot reattached. Then my Heath spiraled out of control with arthritis. Many sites in my body, my bones are breaking down and becoming arthritic. Several times a week, my body feels like I have the real influenza. You know the one where you feel like you are going to die and then it disappears. My doctor says it is Fibromyalgia. I understand many people are suffering from that but in my case I think they just stopped there because they didn't want to look further. My symptoms are not like what I hear other people say Fibromyalgia is.
Back to you. I got sidetracked. I don't think you should tell people you are fine. I feel like you do and I do not want to be the person who is always whining and complaining. But if you want people to understand what you are going through, they have to know what you are going through. You may have to explain to them what your illness is. If kit were you, being that you are a human being, with the ability to show compassion and loved not another, wouldn't you want to have empathy for your family or friends. To take time and imagine what their life may be like so that in some way that your time and resources allow, you can support them. I don't know you, but I think people who have pain can be more supportive of others because they know what they need. A hug, a cake, $25, groceries, a phone call.
So if you would do that because you care about others, we have to think that most people would but we have to let them. They have to know what it is like to be us. And you are right, when someone ask us how we are doing? We don't need to tell them we in pain and constipated. Ha ha. But we can be truthful. I tell people that I am here. I don't tell them am good or bad but usually people can tell by the way we look that we are not well. Most people know we are lying when we say we are fine. They were just really trying to let us tell them what is going on.
I think you may get more support this way. I am stuck in my room with pain a lot. I try to go out with the family in the living room for a couple of hours. But besides that, I am in bed. It is hard to not stay focused on ourselves and just think in terms of what we are going through. I applaud you for thinking about your daughter. Try hard to imagine the impact your illness is having others to so you can be understanding of them even if they don't extend to you. I have to take time to praise my wife for what she does for me. I have to remind her to take time for herself , to go on a vacation with her friends. I don't want my life to stop hers.
Communication is key!
I wish you the best. I hope you use this more. I am new here and I like it. I was really lonely in my family because they cannot imagine what it is like to suffer my type of pain. They have nothing to compare it to. But they are starting to resent some of my problems and it made me very lonely. This place is helping.
Wow it's good to know I'm not the only one who lies about my pain!!! When people ask me if I'm feeling bad it's either no I'm just tired or oh yeah I'm fine! With a smile on my face too! Pain is one thing but being in pain, alone, and staying strong is another!!!! You just have to always remember who you are, and I mean who YOU are! Not who your pain makes you! Try not to let your pain define who you are. Although as horrible as it sounds, a lot of good things can come from pain. While dealing with true physical pain you become stronger, you learn to care more for others, you respect more, you are more thankful even if it's a goodnights sleep, you cherish more good memories and soo many other things!! I believe people who go through life struggling with pain have a different perspective on life!
Never give up on yourself because you are never alone!!!! That's why I think this website is such a great blessing for so many people on here. I don't know a single person around me who is ever in even half the pain I'm in but when I get on here it's shows me, I'm no where close to being alone!!! Maybe you should try and tell them how you really feel.. Say I'm not able to be cured as much as I wish I could be I can't!! Remind them that you work hard ontop of what your body already has to go through! I would maybe ask them, as nicely as you could, if instead of asking when you're going to be better or if you're better yet if they could just ask if you need to talk or how your day was... anything!! Although I'm sure they are just making sure you are okay and want you to be better, they don't realize that it's not that simple and isn't fun to talk about it!
Ashleynwright, you are so right about using what we go through to make us stronger. My grandmother suffered for 10-15 years before she died. I didn't realize until recently, looking back at how she behaved; you could tell something was wrong and she didn't feel good. Shed say, " I'm just tired," if you asked. But now I realize, even through her pain she was one of the strongest and most thankful, kind hearted person in my life. I'm glad she was my role model! My grandkids know I have problems and I hope they'll think the same of me when they hit major bumps in life, chronic or temporary.
FlappysLady81 I've always thought that! I'm not saying I'm positive every single day because trust me there are definitely some days when I really get down on life. But then I think I have to be going through this for some reason, someway somehow God will use all this for something! It's great that you were able to understand her I'm sure that would mean a lot to her! At least she is finally out of pain and probably smiling down at you!!! I'm sure your grandkids will realize too :)
My granddaughter, age 8, she already makes suggestions to make it easier on me, just so she and I can do things together. She amazes me with her insight at such a young age. I tell her she's my little angel 😇
Blessed... You are a very kind and compassionate person. I know your kitty follows you around because our pets KNOW there is a problem. My little ferret, Mischief does the same thing. Animals are very quieting to the soul. I have very similar issues to yours (and then some). Folks don't get that when you have anxiety, you can't just "think positive" and it will be all better. It is beyond our control. Pain only accentuates it. This year with all the radical weather suffering is off the chain. I, too, spend a lot of time alone, crying, wishing things would be better. The only thing I'm answered with is more pain in new places and deeper depression. There are days I don't even want to shower and just want to sleep the time away (if only I could). I am so glad to have this forum to speak with all of the other folks like us who suffer every day. We can never, ever give up on ourselves. We have to hang on and push through no matter what. There HAS to be a reason we have been put here to suffer. Perhaps it's to show others they should be grateful for their blessings. My thoughts are that there is always someone worse off and I'm not alone. This community is a blessing and I extend my heart and a hug to each and every one of my fellow pain sufferers. I come on here every day.... If anyone wants to chat, I'm here to listen.
It's a bit ironic. For the longest time my nickname at work has been Pollyanna and I know I've aggrevated people with my never ending optimism. But here lately, it's been VERY hard to be positive. I am coming to terms with not getting better. My goal now is to maintain and not get worse! If I can accomplish that, I'm happy.
I agree, this community is awesome in so many ways. Encouragement, tips and suggestions, and the priceless reality checks that we're not alone, there are many of us and we all suffer differently. I'm so glad you all are here!
I didn't read every entry, my attention span had greatly diminished over this past year. Pain screws with more than just the hurt.
Today I feel, for the first time, like I'm not alone in this fight. Despite having my mom stand by me (she has chronic pain too), I've felt alone in this fight. Oh, there are others in pain but for some reason the medical personnel don't want to prescribe narcotics & they act like I have some control. I don't & I know it, but it's frustrating. All of these posts have helped me see that I'm not alone, that all of you are feeling what I am too.
Becca, thank you for starting this thread. I don't really have anything to add (tho my dogs help me thru - you don't need a service dog, just go to the Humane Society near you & adopt a new best friend). Your post has allowed me to sigh a bit in relief. Thank you. And thank the rest of you for your posts & the strength that I feel in every one of them. I'm not about to let this pain problem rob me of anything else. We can be here for each other.
I would like to thank all of you who replied to me from the bottom of my heart. It has been so long since I've talked to anyone who really understood what I'm going through that I thought the same as my husband, that I had a phycological issue. Anyhow we are living apart for a few months because the last 2 years have been like a living hell with him trying to "diagnose" me with something and he actually went to the point where he wrote a letter to my psychiatrist trying to get her to committ me to hospital. I have lost 50 lbs. in the last 2 years but all within 6 months. I went from 165 to 118 at the lowest, now I am back to 124. I should actually weigh about 145. To me that was the biggest betrayal of all time! But as one of my friends put it, he actually did think he was doing the right thing. I got through that by "running away from home" for a couple of weeks..lol.. That was in July. He is a salesman, a very good one, he doesn't stop until he has made a sale and that's what he was doing with me, he wasn't stopping until the job was done to his satisfaction. He even had my boys who are 29 & 30 convinced I should go (because of weight loss, withdrawal etc.) Eventually they saw through him because I found and printed the letter(s) he had written to my psychiatrist and showed them. I had the same psychiatrist since 2004, then just when I started to get itchy, lose weight etc. his team was pulled back to another city... so I had only met my new one twice, and she didn't know me very well. While I was at my friends in July I kept saying to her, "He's got something else planned, I know it, he's just being too calm", and low and behold that Saturday two cops showed up at the door to talk to me. I had been talking to my husband and told him how terrified I was of him to the point where I thought that an SUV that pulled in up the road was him and my boys coming to try to get me to go to hospital. He didn't know I had been hallucinating because of the drugs my psychiatrist put me on. She had me on an anti-depressant, which I've never been able to take, then she doubled it and added Abilify. Well, when she did that I started feeling really odd and that's when I got in the car and went to Barb's. Half an hour after I took the Abilify that night she said to me, "I don't know what the h... you just took but don't take it again, you are slurring your words, running into furniture and can barely walk". My pharmacist was nice enough to come right to her house, reviewed those meds and told me to get off of them. So that's how hubby got the cops to come, called my psychiatrist and told her I was hallucinating; and thought I may be a threat to myself or others..anyhow I was working on getting my life in order; medical paperwork etc. and they saw that, talked to me for 10 minutes; called back to the hospital and said, "There's no need for her to go anywhere, so you can stop everything". A couple of minutes later he got up and went to intercept the ambulance that was on it's way to take me away.. Sounds like I could write a book or movie doesn't it? In October I decided to check myself into the hospital, mainly because I wanted to get to know my psychiatrist better and vice-versa. Turns out she is very nice, we have the same sense of humour, and I am not taking any of those pills anymore.. It was a 3 week stay in a small town hospital where you could come and go as you pleased if they thought you were fit, so I didn't feel "locked in" and the group therapy sessions helped me alot not to keep blaming myself for how our marriage was. Bill & I talked over Christmas, we live in Ontario, right on Lake Huron and we (he) decided the best thing to do now was to go to Cleveland, Ohio where you can see any specialist that you need to, all booked within 2-3 days. First I saw the endocrinologist. My family doctor took away my thyroid medication, because she goes based only on bloodwork, not how you feel. I have been freezing cold since February and have absolutely no energy, so this doctor said I don't see a problem with you taking it and wrote me a script for a years worth. Only thing he wants is that I do bloodwork in 3-4 weeks and send it to him. Then every 3 months after that. Then I saw a urologist, for my bladder prolapse. I knew something was wrong there because I had been having such pain (lower back and abdomen) and it was hard to void. I have been back to the surgeon here 5 times and he keeps saying there is no problem. Well, my diagnoses was that the mesh they used to suspend my bladder was working it's way through the vaginal wall, my urethra is in the wrong position and he wants a scope done of my bladder to make sure that none of the tape is working it's way into my bladder. Recommendation, ASAP, take out mesh, reconstructive surgery on urethra and vagina. Not a nice procedure. But why couldn't the guy that I have here that did the surgery see that, it was 2 minutes that it took to see and feel that mesh protruding.... Next I went to the Allergy guy, who after listening to me for 5 minutes said he had an idea, that it could be my mast cells, which release histamine into your system. He took bloodwork to check for that and other allergies. But I won't have the results until 2 weeks from now. Next was the Dermotologist. He looked me over, ran his hands through my hair and said I looked "normal" for a woman my age.. I said what about all these bumps and scabs on my hair? He said where? and I had to point them out to him... He said that's not a big deal, I'll give you a cream and special shampoo to clear that up. I specifically asked him for a biopsy of the original two bumps and he said there was no need, So here I go again and no biopsy.. I will try what he prescribed, if it doesn't work I'll go back to my dermo here and demand a biopsy. Positives: Hubby went with me and paid for all doctors. I found out that there was a problem with my bladder sling, which I knew in my mind there was anyway. I guess it could perforate my bowel too so I need to find a really good specialist here that will do exactly what the doctor in Cleveland recommended. And the mast cells in my body could be causing all of my skin conditions. Next Step: Regain some trust in my husband and go to marriage councelling... I apologize for going on so long, but all of your replies amazed me and pulled at my heart strings.. thanks again, I wish I could reach out and give you all a big hug!!
I can so relate to this. I went to see a nuerologist the other day for my tremors. Apparently when my pain is overwhelming my body shakes. Any she told me I need a shrink because it is in my mind because I focus on the pain and nothing else. Really if my body is shaking because of the amount of pain I am in doesn't that mean I am doing my best to not focus on it but my body is overwhelmed with it. Sorry didn't mean to rant on your post but I understand and know the frustration that comes from all directions...friends if you actually manage to keep them, family who try but really don't understand at all and worst of all the doctors that are suppose to be helping you that make you feel crazy and like a hypochondriac.
Omg, Vicky, We have many issues in common. The 2010 mass they removed was adheased to multiple pelvic organs. The GYN created a sling from my omental tissue, but its too tight. I have bladder & bowel issues and pelvic floor congestion/dysfunction because of the extensive surgery done. My vaginal vault is covered in scar tissue that's probably involving the bladder and rectal area. I'm seeing a specialist next week and likely facing more surgery. BTW, the 2010 surgeon was fired and he's being sued. I may be doing so too, depending on my damage. Good luck with getting DX & tx for your issues. As for your marriage, counseling is a good thing. I'll say a prayer, God's will be done. 🌼
Hello Everyone, I have been following this thread with great interest. I thought I had a good handle on what understanding means. After reading all of your posts I realize that there is more to it then I have ever thought about. I have been focusing on the lack of understanding I encounter. Maybe there is a better way to approach this. Thank you. This might help me get out of my current funk.
It's so very sad... They can't find any reasonable "cure" or something that we can least takes some of the distress we deal with all the time.... Best of luck... I'm here, just as we all are, if you need me, just post and I'll get back to you ASAP!!!