Since this is my first post on here, I guess il introduce myself.. My names Taylor and i'm 21. My journey with crps started alittle over a year ago, with no injury whatsoever, other then having the flu and feeling achy in my foream.. after a couple tests, crps was a possible diagnosis. Started therapy, in my small town pt, which helped but not much.

Then started Cosmetology school. was about 5 months in and one day had a huge flare and intense pain. went on a medical leave, and saw a hand and arm specialist, did more intense pt, more dr tests rheumatologist, neurologist, and a couple more drs. All with the same answer.. it s crps.

Now ive been out of school 7 months. Still no change in pain. therapy was discontinued, due to not making progress anymore, and just starting with a pain management DR, putting me on Lyrica and Lidocaine patches, if these don't help supposed to be getting my first nerve block done. THis new dr basically told me I might need to think of other career options since the crps is in my right arm. Im literally at a loss. im 21.. this is not what I should be feeling like.

JUst moved into my first apartment with my boyfriend, and with the pain im in I hate going out or doing anything anymore really. Most of the time I lay around at home, im right handed & with this in that hand I dread using it somedays.
My moms someone who always has compassion for me, but somedays I just want to scream you don't know what its like... when she says I need to keep using my hand so it doesn't lock up. anyone else ever feel like that?

that's where im at right now. that's my story.
Im not sure what im looking to get out of this group, maybe just someone who understands what im going through.

Hi there

Welcome to the forum here, although obviously I'm sorry that you have to be here... Yes we do understand what it's like, we all know that frustration and anger, and of course the pain and mobility problems. It all sucks.

Have a good look around the threads here as there's a lot of advice and tips that might help. If it's any help, my first year or so was the worst part, after that the pain did become more manageable and I can now do a lot more than I could a year ago! I've had CRPS just over two years (started in my left knee after an op, now in my whole left side), and this time last year I was in a wheelchair outside the house, and on crutches in it. Rough time. Now I am off most of the meds, walking crutchless, and my wheelchair is covered in fantastic cobwebs in the garage! I'm on Lyrica myself at a low dose of 50mg twice a day now (I was on a higher dose for a while but the lower amount suits me better), and I've had lidocaine patches (didn't help me much tbh) - I hope you have success with both, I know lots of folk swear by them! I'm glad you have a proactive pain doc prepared to treat your CRPS aggressively.

I'm so sorry yours is based in your right arm. Having it in my left is bad enough. It's true that we do have to follow the 'use it or lose it' mantra, but we all know how hard it is some days. In time it does help though, both with the pain and the mobility - unfortunately not using it will worsen both the pain and how much you can do. Have you got a good physio to help with exercises and advice?

It is hard work having this condition, there's no other way. You are young and have a life still ahead, with fun and laughter and achievement still possible, even if it doesn't feel like that right now - don't ever give up on that. Find things that help you, and learn the things that make your pain worse. Managing your days is a tough lesson, but pacing yourself can be the most effective pain relief. Also look at relaxation techniques to help your body de-stress regularly (your body tenses with the pain, and it's really bad for you long term) - I have a morning hour-long routine of stretches, Qi Gong exercises, massage and meditation. It sounds posh, but trust me, in my sitting room it's not! It all helps me deal with the day and feel a bit calmer. Find something that does the same for you. Having a little routine gives your day some structure too.

There's loads of other stuff to try - I've had some fab advice from others on here as well, and you never stop learning about this disease. Vitamin C 500mg twice a day (prevents spread), and unperfumed Epsom salts (in a warm bath, or wrapped in a damp cloth, helps with the pain and redness) are two to try if you haven't already.

Just don't let this stop you enjoying stuff, and shrinking your world down to tiny proportions. Having a structure, and a reason (and determination) to get up and face each day is vital, otherwise everything is just bleak. Friendships change, and you have to work hard to keep things going. I so understand you not being able to go to school, but there are courses you can do from home, and it's good to keep your mind active - distraction works great to take your mind off the pain...

We're a nice bunch here, and we completely get the overwhelming emotions and fears you have. Feel free to vent and rant if you need to

Keep posting and let us know how you get on. I hope you have a better day today

Bram

I'm sorry you have rsd. It does stink, but people on this forum do understand what you're going through. I started going on this forum just to be able to talk to people who understand what I'm going through. I've had rsd for over 2 years and fibromyalgia for over 6 months. I don't know many people in my life who are going through these diseases, but have met many on this forum who do. I have learned helpful advice from them, and tried to help them too. Sometimes just venting to others who understand helps alot. The support on this forum is wonderful and I hope it helps you too. I get frustrated too when I'm told from one dr that I have possible rsd spread and from another that it's may be fibromyalgia and from antoher that it's may be a pinched nerve and from anther that maybe I should see chronic pain therapist to deal with the fear of rsd spread and constant pain. It's so frustrating. I already see a gp, pm dr, nuerologist, rheuatologist and physhiatrist. I can't afford the drs they suggest anyway. They are always out of network and I'm drowning in medical debt as it is. And it's frustrating when my family tries to give me advice. They tell me to exercise more and to get out and socialize more. It's hard when you hurt all over all the time and feel like you're going to get sick from all the pills you take. And it's hared to try to explain to people what's wrong with you only to hear them say that "I look okay". It make me want to scram too. I know they are trying to help but the drs don't really know for sure what rsd is about and family members don't know how hard it is to exercise with the pain we go through everyday and how hard it is to deal with people who question what's wrong with you. I do understand how you feel and am here if you ever need to vent. Sometimes, just venting helps me get through the day a little easier. Knowing you're not alone helps alot, and you are not alone on this forum. There are wonderful and compassionate people here who are going through what you are. I hope you feel a little better today and that you can find something you love to do even with rsd. My thoughts are with you. Take care.

The journey of crps, we all hate it, we want it gone, and never to we get used to. I'm so sorry you are here. Pain sucks, crps is worse. Ah today is a good day for me I hope you read and research everything. Please write in private if you want. Gl on this horrible journey

Sweetheart, I was 24 when I got this stupid disorder. I went almost 10 yrs with out a diagnosis except that it was all in my head. All because I ran to my tent in Iraq and "strained" my knee. We all go through the "No one understands what I'm going through" phase. Its natural. I do live by the old "Use it or lose it" mantra. We have to. I have a 2 yr old and another on the way that I have to chase down. I go whole days that I want to hide under the bed and cry. We are human of course we don't want to hurt all the time. You will come to terms with it and figure out how to deal with it. DO NOT let anyone or yourself tell you its all in your head. Its not. The people on this forum know. If we didn't know what it felt like to wake up or even still be awake and hurting we wouldn't be here. Don't feel alone. It hurts like the dickens. Research, research, research. That's the biggest advice I can give you. I haven't done much research until I was diagnosed. After almost 10 yrs I have figured out that I can't stand for more than 10 min without sitting down and elevating my leg or I will pay for it later. Does it stop me from standing at the sink to make dinner? No I stand for 10 then go sit down with my leg up. I have also figured out that walking without my cane outside the house is a very bad idea. I loose my balance really easy and look like a drunk woman. Stay proactive with your doctors. See about going into Occupational Therapy instead of Physical Therapy. If you do physical therapy make sure they are doing it for chronic not acute pain. Also warm Epsom salt soaks for your arm. I know it sounds weird but it does help some people. I have done it for my leg and it did take a little bit away. I am off all treatments while I'm pregnant so I do what I need to function and look after my son. Also I wasn't on any treatment for a very long time and everyone wondered why I acted like I was in pain. Well I really was and am still in pain. I was on Neurontin and Norco. It barely took the edge off the pain. Just enough to where I could do what I had to but still hurt. Also DO NOT use ice. Use heat or moist heat. Try to keep as positive as you can. Don't let this get to you. Keep being yourself. keep smiling even when it hurts. Find something to laugh about everyday. The old cliché of "laughter is the best medicine" is an old cliché for a reason. It does help. Keep distracted as much as you can also. If you don't think about it then the pain is a little less. I have learned some of these tricks on here and some have been me learning them.

I'm so heartsick for all of you with CRPS...my daughter has been suffering from this horrid disease for almost three years (from a fall down stairs) and it has just made her life so hard...she is struggling to work and stay positive and deal with the side effects of strong pain medication. I keep saying this should be happening to an old geezer like me, not someone with so much life to live. Has anyone read the article that was in E Science News Feb 2010 with reference to research in Liverpool that gives hope to pain relief by treating the immune system with an infusion of intravenous immunoglobin (IVIG)...just wondering if anyone knows if this treatment is a possibility in the US? We keep hoping for a treatment that will cure this disease!!

Hi Taylor,

So sorry to hear about your battle with RSD.

I know what it's like. I'm 18 years old and have had RSD since I was 12. Started in my left ankle from a sprain, then spread to my right arm and possibly my back (back not diagnosed as have Orthopaedic problems which could cause same symptoms).

I live in the UK and like you, am currently out of college due to a combination of RSD and blood pressure problems (I have POTS and can collapse a lot). Thankfully I have supportive tutors who have let me study from home at a pace that suits me, although it can be stressful as they don't always mark my work nor do I receive any feedback. Maybe working from home is something you could look into if possible and with the right support? Least then you wouldn't totally fall behind in all your studies? I'm wanting to go to University next year so am hoping that I can at least resolve or minimise some of the pain by then so that I can function properly.

I'm glad you have a supportive mum. Mine helps a lot too... would be lost without her. I do understand your frustrations though, when your in pain you certainly DON'T want to move what hurts, even though its best for you. I kinda had to learn the phrase 'Use it or lose it'. When my RSD spread to my arm, my hand looked into a fist and stayed like that for months. Drs tried splints, PT, everything but nothing worked. Eventually with mirror box therapy and retraining the nerves how to 'work' properly by touching things, my hand gradually started to open out again.

If you ever want someone to talk to i'm here. I know what its like having RSD at such a young age. Wanting to go out with friends / boyfriend but not having enough energy or being in too much pain to simply do so, missing out on parties etc because you don't feel well. Its awful. I really hope things start improving for you.

Alison