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Completely frustrated with people! Anyone else feel this way?

Jun 09, 2015 1:33 PM

Question, I have CRPS type 2 from nerve damage to my right hand. 4 hand surgeries in less then 3 years. Anyway it seems I am getting worse not better. I never talk to people about it & if people ask how I feel I am so tired of talking about it that I just say " I alive" anyway I have been so frustrated lately when family or friends or family friends offer their advice or opinions on what I should, do with my life & I am sick of it. I am tired of hearing "mind over matter" don't think about it" just go volunteer somewhere" you can drive it's your right hand & you don't drive stick" meanwhile I am in a splint & when I am in a car I have to wear a sling as every bump in the road hurts me. Besides the fact that I am on pain meds & don't have quick reaction time with my right arm. I am just so frustrated that it makes me not want to see anyone including my parents. It's beyond frustrating because A: I didn't ask for advice B: I have a team of dr's that I listen to & C: it's so frustrating that it causes me to have tremors from the stress & makes me want to strangle someone. I am sure others have been frustrated as well & no one gets it they don't get the pain, they don't get that this life is hell, this is not "living" I just wish for one minute they could step into my body & feel what I feel. They couldn't handle it. I am 36 & feel like I am 90... So frustrated I don't know what to do anymore

Jun 09, 2015 4:15 PM

Welcome to the group. I can say that I am right there with you. Our friends and family have no idea what we are going through nor do they really know how to help. I suggest you look up But you don't look sick the spoon theory. This was a power point lecture given at a Lupus conference. It may help give you a few tips on how to enlighten your well wishers. It is so simple but it is also a brilliant I hope you find at least some peace with our ever growing group. There are a few of us trying to do things differently as in natural food and herbs. Medication is just not working and making any sense. If interested I can share more. Many of us have multiple chronic pain and issues. Again welcome and just look around at other posts. We are all frustrated and wish that other people could live in our situation for a few days.

Jun 09, 2015 4:21 PM

I understand and often do feel the same way. My 88 year old mom has severe pain and problems associated with leg amputation, and I listen to her pains and understand, but can't share mine. My husband finally gets it, but no one else. I can no longer work. My manager found a way to get rid of me because of my pain. I hope you heal and do not have to live like this the rest of your life. You are young enough to have hope. I am 63 and feel like I'm done for, but struggle to get my life back. Thanks for sharing your frustration.

Jun 09, 2015 6:07 PM

LMB: thank you for that information. I just read the spoon theory & I just sent it to a few of my family members who just don't get it... My best friend has lupus & I believe she is the only one who understands me or gets that I can't ever make a commitment when it comes to plans. She is the only one this winter who when everyone else knew I couldn't drive & they didn't come to visit me (including my brother or his wife with the kids) they live 20 mins from me. Yet my best friend refused to except that I wouldn't see her & drove 3hrs to see me even though it was a bad day. It's because she gets it.
Thank you again for introducing me to the spoon theory

Jun 12, 2015 7:56 PM

Welcome 024! I don't have much to add since LMB & RedefiningLife covered it so well. I am a positive person at heart, always trying to look at the upside. But even I have my moments. It's impossible to keep a smile on your face and act as if your life is perfect, when in actuality it's just the opposite. Coming to this community has been such a blessing because everyone here understands and no one has to pretend. After five years my husband finally comprehends and understands. He speaks up for me to family and doctors. Someone I've known for decades always has to one-up anyone else's pain, as it is a competition. Geez, if give them all mine! You aren't alone getting frustrated at those who judge us without an inkling of idea of what we go through. This community is a great group of people, and I'm glad I found you all!🙏🌼

Jun 12, 2015 9:30 PM

024, we all want to be understood and for people to empathize with us. But empathy is based on knowledge. I know you are tired of repeating yourself but maybe you are not being thorough enough and as forceful. When we empathize when someone, we take the knowledge they give us and imagine what it is like to walk in their shoes. So you would thoroughly need to show them all you go through with your illness. You need to show them the day in your life and the limitations that they don't see and maybe the times you cry and don't tell them about your extreme pain. You might need to explain to them that you put on a brave face to make them feel good but that they get the wron idea by that. That just because you act as positive as you can, they think you can do more. I hate with a passion the people who say that it is mind over matter. I believe anti-depressants help people in pain deal with pain which makes their their pain a little less. But we can't just will our pain away. We can do biofeedback. It really helps our pain when we direct our mind toward taking pain away from a site but that is only when you use all your recourses. You can't do anything else like watch tv and do that. So people who suggest your mind can will that away have never experience chronic pain and if we love them, that makes us happy. But we do need to have an open and honest talk with them and tell them to stop doing the things that are hurting you because it is making your pain worse. I think it may make you feel better. If it doesn't, you still have this group. But a part of me really thinks this will help if your family really cares about you.

Jun 14, 2015 6:36 PM

People always think that you don't look sick. What does sick look like? Do you mean that I'm not in a wheelchair therefore I can't have a physical disability? Do you mean that I do my hair and wear makeup so I can't be unwell? What do you mean? This is the single most frustrating thing you can say to someone with fibromyalgia. Instead, say: It's awful isn't it, my friend has ( insert invisible illness ) and it's so frustrating that people assume you can see all health problems. "I am 99% sure that we are not the only person you know with an invisible illness. In fact, most health conditions are invisible, so we need to stop thinking that if you can't see then it isn't there.

Jun 14, 2015 7:15 PM

Leolion66, I have been told that so many times that if I had a dollar for every time, I'd have enough to go buy a new tv!! I'm always hearing, "how are you doing?" I say, "I'm in the middle of a fibro flare-up." And they say, "Well, you look fantastic!! Nobody would ever know you're sick." It pissese off because to me that is like saying, if you don't LOOK bad, it can't be as bad as you say. I get what you're feeling and it sucks, totally. I'm sure there are MANY other folks here that have been through the same thing. People with heart problems or digestive problems don't necessarily look sick either but it doesn't make it any less real!!

Jun 15, 2015 12:36 AM

I also have crps, and it has been very tough. I got worse, ended up in a wheel chair barely able to move.
Now, I've gone to physical therapy, done some of the desensitization stuff, and tried a ton of medications, especially ones that are not normal treatment.
I am getting better, but now a lot of people believe I was just faking.
Am very shy and quiet, the thing I want the last is attention. Also, the district told me I could not be at school if I needed a medication like Tylenol 3.
I hold a lot more sympathy now because I'm realizing just how much is invisible to people around us.
A lot of people (my age) don't relate to me because most of their life is school, sports, and work when mine is medication, appointments, research, and frustration with doctors.
I understand why they judge me, it's still hard for me to deal with. How can anyone understand something they've never felt?
When I say "everywhere hurts, but the meds won't help" to the school nurse and the people I need to do a project with, they ask "where?".
Luckily the current nurse is friendly and compassionate because her daughter has the same diagnosis.
I have had other students call me high, ironically it was when my doc decided I was drug seeking and gave me only Tylenol and Ibuprofen (which I'm allergic/sensitive to) so I had no medication.
I also get dizzy and feel like fainting every time I stand up, but when I'm feeling like that I can't speak, can't explain what is happening, and people just stare as I collapse against a wall.
So yeah, I'm frustrated. But they don't know anything but what they have experienced. I'm the same way. I don't know what it's like not to have pain from writing, or what it's like to love sports.
What I do know is everyone will judge everyone else, and we will all just have to deal.
I guess that's ask we can do.

Jun 15, 2015 10:55 PM

There's a TED lecture by a pediatrician talking specifically about pain--about crps and one of his patients (I think she did the desensitization thing). I don't know how to find it. I can try, if you're interested (they're all about 20min--it might be worth at least getting family and close friends to watch)...

Jun 16, 2015 12:50 PM

To every single person in here who wrote either to me or added on to the frustration, I want to thank you all for your advice as well as the understanding of what I am feeling.. Fibromyalgia & CRPS go hand in hand. Matter of fact as I write this now, it's been raining for 3 days now & I am have trouble moving , let alone getting out of bed. The dr's are thinking I have the beginning stages of fibromyalgia (great another invisible illness) when my biofeedback therapist as well as my mom told me to look into support groups, I was opposed to it. Maybe because I don't like talking about stuff since my entire life I have dealt with depression & anxiety that when I was a teenager I was forced to go to "groups" I was never able to relate to the people in my group as when I was younger I was missed diagnosed with a mental illness that I knew I did not have, so I was never a participant in them. When I found this app initially to just keep track of my pain for my neurologist & team of dr's & myself, I came across this community & seeing how you can be anonymous as well as being shocked seeing so many people in here that suffer like me or how many with CRPS blew me away. For the 1st time I felt like "wow, I am not crazy" or I read something & think to myself " this could be me talking" it felt really good so again thank you to everyone & thank you for after a few months on here & many sleepless days & nights reading I was finally ready to write. I blew myself away along with my therapist & mom.. I really need this as much as all of you do.. I feel safe.
Starrynight: even though I am an adult I would be very interested in Knowing about this TED Lecture, what it is about & listening so if you find it please let me know..
Ferretbandit: how old are you? I am so sorry you are a kid with this disease. It sucks for anyone at any age but being in school has to be tough. Just know that you are stronger then every other kid in your school. Don't let any kid allow you to feel worse then you do. Kids are mean & not understanding & with these forms of diseases we are already sensitive to how people communicate with us negatively.
Also what type of CRPS do you have & what form (stage & type 1 or 2?) I like hearing other people's stories as to what type & how you got it. If you don't mind that is. If you do I get that too. Also I am curious because you said you are getting a little better & I am wondering what treatment is helping?
I am on all sorts of meds, do biofeedback as well as occupational therapy, neurologists ( I hate pain management so I use my neurologist for that as well)
Again everyone else, alwayZinpain: can't agree with you more with all the ignorant people & their opinions. When anyone asks me now how I am I just say " I am alive"
LeoLion66: I am so on the same page as you. People say to me " but you look so good" or you can drive just remove your splint" etc.. I get well your makeup looks great. Well yeah jackasses, before I developed CRPS I was an Esthetician as well as a makeup artist. So since it's my right hand & I am a lefty the only thing I can still do to make myself look better is to do my makeup. As for my hair I can't do it. I either need help or just let it dry naturally, yet people are so used to me having straight hair that when they see my hair which is naturally wavy they think I did it.
Profiler: again we are on the same page. My parents care enough to look things up or shall I say they read what I send them. My dad Won't read so it's easier for me to send him links on YouTube in videos. My aunts read up on it but my brother & sister in law don't !!! Their daughter who is 10 & we are extremely close ( I think if it wasn't for my niece & nephew I would not be here today) she asks me all the time what I have & wants to understand. It's sweet & she is very mindful of my condition she knows when I am faking a smile. I just don't explain to much to her as she is 10.
It's amazing how much the kids care or know when I am exhausted from just faking a smile, yet the adults are just excuse my language " ignorant ass's "
Sorry this was so long trying to get everyone in who wrote. If I didn't say your name or spelled it wrong I am sorry however I have read everyone's comments.

Jun 16, 2015 12:53 PM

Flappyslady & redEfininglife: sorry I knew I left you out.. Thank you for your words & thank you Flappyslady for welcoming me into this group. Redefininglife; I get you as my dad suffers from afib & I have tried to explain to him how when he goes into an afib attack that he can't control it, well that's like me I can't control it however it's like talking to a wall.

Jun 16, 2015 4:29 PM

I'm 14, I don't remember which type of CRPS I have, but it's the one where the cause isn't obvious/known.
I've never had a surgery, or broken a bone but I have always had pain from writing.
There is this weird grinding spasm in my middle finger's joint, so it is impossible to hold a pencil like other people.
I get confused with stages.
It started in my right (dominant) wrist, spread up to my shoulder, then to the other side.
Then I used Gallium, and it seemed to be reversing.
The neurologist thought I had fibromyalgia.
Suddenly, I got pain in my feet, and the arm issues came back.
The neurologist ended up deciding it was peripheral neuropathy, which might actually be the original injury that led to CRPS.
I eventually landed in a wheel chair (after a cane and walker) then finally got an appointment with pain management.
They decided not to add any meds because my neurologist and dad had each added new meds recently.
I went to physical therapy, and she was actually excited, because she could actually help me get better.
I guess she's had 15 years of experience with CRPS in kids/teens.
I did some of the desensitization therapy, which for me means a huge box with 40 pounds of rice.
I stopped taking gabapentin or pregabalin after pregabalin caused my leg to swell and pain to increase.
I now take Gallium, DMSO, LDN, kava root, magnolia bark, various vitamins, Iodine, Magnesium, potassium, lemon balm, ginger, pseudoephedrine, Benadryl, garlic, Tumeric, caffeine, Albuterol, Quinine, fish oil, and other stuff.
I have partially reversed, from full body to only wrists and feet.
I'm walking again, moving again, and beginning to do the things I love again.
I've done biofeedback too, didn't notice much change.

Jun 16, 2015 8:14 PM

Ferret- I am so sorry to hear that. It's aweful at such a young age. I can tell you just by what you told me you have CRPS type I. I know this because I have type II which is caused by a injury to your nerves. I have had 4 hand surgeries in the past 2 1/2 years. All from coming home from work one day stretching my hands & feeling a "pop" I ended up tearing my tendon from the type of work I did. I was put out of work for 6 weeks tried fixing it without surgery & then literally had no choice but to have surgery. Each surgery has need completely different from the other all right hand & they think I started to develop it during the injury & each surgery caused it to get worse. Now I have type II stage 3/4 it's the incurable type. I a terrified that it is spreading. I already know it spread from my hand to my shoulder with terrible tremors & spasms, due to the 1st surgery also I have a partially paralyzed index finger with no feeling whatsoever of the finger. My biggest fear is spreading as now I have numbness in my right foot if I sit in one position for longer then 3 mins & at night as well as during the day sometimes my hand feels like it's falling asleep with pins & needles. I spend most days in a splint & have to sleep in it every night. I have to wear when I am out. Or in a car with a sling for protection as well as security.. Also as a warning sign I guess for people to let them know don't touch my right side whatsoever...
You are lucky you are young & they caught it when they did. You will probably be a success story or go into remission & be ok... Me not so much. I am 36 with the type that is due to an injury. The dr's want to remove some of my nerve endings in my hand but it's not a 100% guarantee that it will work it might start from my wrist up or from wherever they stop the removal. It is a 100% guarantee that wherever I remove from that part will be paralyzed so as of right now I have said no to it. I need at least 1 yr of healing without surgery. Also wanted me to do the ketamine treatment nut to the extreme of going into a medically induced coma for a week or 2. Again I said no as that is only to help a little if it does at all otherwise it's just to get off pain meds.(pain meds don't help anyway)
I was on a lot of medications that just didn't react well with my body so I tend to be very cautious now. I am still a drug store, however I take the ones that have the least amount of side effects as I am a walking bulletin for every bad reaction you can get from meds. Kinda like the commercials where they tell you this or that might cause xy&z, well I would have xy&z with a few others some effects that dr's never heard of but I got... Lol.. If I don't laugh about it I would cry.. That this is what my life has come down to..
I used to love working out, loved yoga & all insane types of cardio however now I can not do any of it as my hand will blow up to the size of a balloon. It sucks cause that was my therapy before all this happend. I would be so happy to be able to do anything vs laying down with insomnia & pAin, or just sitting around doing nothing as even showering or going to the dr exhausts me so badly I need to be in bed after it. It's amazing at how simple things that you wouldn't think bother you or hurt you end up doing just that... I have to plan my days around weather, pain & how much an event will exhaust me. I have to choose my days & battles. Like if I have to go out doing errands or going to the dr then I know I can't shower that day as its to much on my body so I have to wait until either the day after or the night before. I mean I used to love my showers & now it has to be 80 in the bathroom the water extremely hot & as much force as my shower head allows as it causes me so much pain I am literally crying to get out. I now take a bath as it is easier on me but when I have to wash my hair I have to shower & it takes me down for a few hrs... My parents know that if I am showering that they can't talk to me, ask me anything or show me anything for at least 2 hrs & that I need a hot cup of coffee as soon as I get out & have to lay down.., it's awesome! Lol
I do have to agree that biofeedback doesn't work however the woman I see I adore so she just helps me mentally which is good as I see her every week for really sanity vs " retraining the brain" I also see an occupational therapist & have done desensitization however it doesn't work well for me. I go to maintain my hand now not to strengthen it or any of that stuff ( not even desensitization any longer). I am as she says not there to get "better" but rather to make sure my hand doesn't atrophy. I can't even hold a roll of toilet paper in my hand. It's amazing what you learn to do when. You more or less have one hand.
I think there is hope for you & will keep you in my thoughts... I would say prayers however now days I am not one for praying only for wishing good thoughts

Jun 16, 2015 10:50 PM

if the difference between the two types of CRPS is nerve damage, then we likely have the same type. My neurologist said it might be that I had a small nerve issue, but because I aggravated it daily it progressed to be nerve damage.
I'm sorry there's not a cure option for you, and that is spreading. If it's in your wrists, have you tried Gallium? It might not work because you're in a later stage, but it might be worth a try.
My dad would be interested in the ketamine coma for me, but it's not affordable. I'm using low dose Naltrexone and DMSO as a alternative.
When my CRPS was full body, I couldn't shower, put clothes on by myself, feed myself, or really anything. I've missed 50+ days of school this year. I remember at the worst point, I remember just existing hurt. I would constantly disassociate from my leg. It was one of the strangest experiences I've ever had. Every time I looked at my leg, it seemed like someone's leg had been amputated and then left next to me.
My physical therapist said that kids and teens have a better chance with desensitization because we are less familiar with everything around us.
I have already atrophied some, but when the CRPS spread, I needed to compensate for my legs with my hands so I would so falling over. Itinerary is definitely amazing what you can learn when you can't use your hands except to catch yourself when you fall, and use the bathroom.
I hope it doesn't spread, or can be slowed at the very least.
Best of luck!

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