Hi,
This is my 1st time posting to this forum. I'm so glad I found you! I was dx'd with crps just last week. I have no doubt this is something I've suffered with the majority of my life.

I am very upset by something that happened today. I'm wondering if a rash (like those posted in photos on this forum) that is limited ONLY to a specific and injured area could be the sign of a reaction to medication.

Just some background: My dx is a result of a sprained wrist that would not heal. Two months after the injury, i was unable to move my fingers, i was in EXTREME pain and had sensations of flames shooting through my hand (and eventually up my arm), my hand/arm has turned pale white.
OT made everything feel worse, my doctor accused me of just seeking pain meds and told me there was nothing wrong with me (I told her I didn't care what class of meds she gave me -- as long as they worked). I found a new doctor who had the experience to know I have crps. He gave me a RX of Gabapentin and almost immediately the pain lessened in my hand, and by the next day I was able to make a fist.

The med seems to help so much with the original pain I was feeling in my hand. I saw the doc yesterday and he said to stay on it for a month and then we'll see about finding a doc who can help long term. I had a rash on my hand when I saw him. By the time I got home the rash was SO painful, it hurt for even AIR to touch it. (It looks exactly like the rashes posted in this forum).
This morning, I had flames shooting up my arm and into my neck. I called the doc and told his assistant I didn't believe I could wait a month. I told her the rash was limited to my injured hand only. I received a voicemail this evening that said for me to stop the Gabapentin because I was obviously having a reaction. (???)

I'm so confused!! Could the Gabapentin cause a rash that is ONLY on the injured area? Would it cause an increase in the nerves firing? It's helping so much with the original crazy making pain I was feeling. The doc admitted to me that he is not familiar enough with this to treat me long term. I'm going to try to call a new doctor tomorrow. I guess, based on what I've read here, that I should seek a pain mgm't specialist…?

I've decided to not take the Gabapentin tonight and hopefully be able to find a new doc tomorrow. I don't know what else to do!?!?

I've been told I'm crazy since I was 12 yrs old and dx'd with lupus. I've since spent my life with strange things that don't add up -- injuries that don't heal, pain worse than injury, nerve pain, etc. I thought I found hope in this new doctor…but now I feel as though i'm back to not being able to get answers. I guess I get to pick myself up and push on until I find the right doctor who can help me going forward.

Thanks for letting me vent/share my story. I'm looking forward to reading about your experiences.

I am sorry to hear what your going through and hope you can find a doctor that can help long term.

I have full body and internal RSD from foot surgery. I have had gabapentin before but I didnt have a reaction like that it just didnt help me. But when I was given fentanyle that caused rashes in different places that burned. But you never now it could be the rsd affecting other areas we are different. Wish I could help more.
I have had rsd since I was 16 but the doctor didnt catch it even with the color changes, swelling, and pain and did 2 more surgeries which after the 3rd it got infected cause it wouldnt heal and the RSD spread full body within 3 months. I really know how you feel about being called crazy it took 56 doctors to be diagnosed in 4 states and half said I was nuts or that my mom was doing muchousin byproxy(not sure on the spelling) to the point they removed her from me for 3 weeks. I was in Alaska at the time and got so bad I needed to be airvaced to cleveland clinic, where they at least got me on crutches, and off feeding tubes. Its now been 7 years and have seen 197 doctors in 7 states.

Where are you located? I hope you can get some good help and get pain relief especialy with the holiday season here. Thats what I told my mom I wish for is that all with RSD to be given a very merry christmas with very little if any pain days as everyone deserves that christams gift!

Merry Christmas

Samantha

Sorry about your issue with this disease. My wife who has RSD was told by many doctors that she was a nut until I started going to every doctors visit, standing there daring them to insult her again.
Check out this link on side effects. Hives is one of them.

http://www.drugs.com/sfx/gabapentin-side-effects.html

Thank you for the reply, and for sharing your story with me -- what you said was very helpful! I'm so sorry you've had to endure so much. I can't imagine how devastating it was to be taken from your mom.

Since going off the gabapentin, my hand is still red but the area does not burn as much. You're so right about not knowing if it can be the rsd or something else. My counselor has three other clients with rsd (I was already seeing her for an other issue). She said that the rsd seems to affect each of us differently.

I am in Colorado Springs. I found a Rocky Mountain RSD website that has some useful information. I wrote them yesterday to see if they happen to have a list of medical professionals in the area who might be familiar with treating rsd.

Merry Christmas to you...and I will join you in wishing pain free days for those who are suffering!!

-sam

Thank you. Your wife is very lucky to have you on her side!! I had a friend go with me to the appointment where I was diagnosed. It was such a relief to have her there.

The link was very helpful as well. I have a very sensitive system, and I didn't realize how much of what I was experiencing may have been a direct result of the gabapentin.

I hope you will be able to find a good doctor who can treat you now. I believe that most of us see pain management doctors, who are anesthesiologists that treat patients with chronic pain, and there are also some who see neurologists. Getting the diagnosis of RSD is both a good and bad thing at the same time, because it's not a great diagnosis to get by any means, but at the same time it is such a relief to finally know what is wrong with you. But you're not alone going through this

Sam

I hope you find an experienced pain management specialist soon. There are many other medications you can work your way through to try and obtain relief from the pain and other symptoms. It is just a case of systematically working through until you hopefully find one or more likely a combination of things that help. It's tedious but there's no substitute for trial and error because its impossible for any doctor to predict which drugs at which doses will work for any given patient.

It may also be that the rash you had was coincidental and nothing to do with the gabapentin. A more experienced pain management specialist should have a deeper experience with the reactions of pain patients to that drug hence a more useful opinion on whether it is worth another try or not.

Meantime, the critical thing is to keep your hand and wrist moving even though it hurts or is difficult. The worst thing you can possibly do is stop moving it or try to keep it guarded from bumps and breezes. It's the toughest thing you will ever have to do and it seems counter-intuitive but it will be the best and cheapest investment in a recovery that you can ever make! You can't damage it or make the sprain come back by using it.

Thank you Yellow and Neurochic! I left messages for several (pain) doctors my friends recommended - I'm hoping to hear back after Christmas.

I am most definitely keeping my hand moving. The ortho wanted me rubbing lotion on it all the time. It seemed weird to me at the time he suggested that. This site is helping me understand why it's important. At first it was too painful to touch -- but thank goodness that's better now. Unfortunately, the pain has traveled and I'm having issues with my legs and neck.

I'm struggling with the idea of taking a pain med (left over from the sprain). This may sound silly, but I'm not sure how to gauge my pain. It's like I've been in pain off and on my entire life -- and this isn't the worst pain i've ever felt. I get caught in a trap of "Well, I'm not in tears...so I can deal with this!" My friends would have a fit to know that I'm in pain and being stubborn about trying to get some relief. I'm wondering if anyone else goes through this...???

At the same time, the pain has been bad enough that i've barely slept the last three nights (I guess that's my answer right there).

Anyway, so glad I found this group. Thank you so much for sharing your experiences!!

Hi all, this is the first time I've been on this site as well but have had RSD or CRPS for 17 years now. When I was first diagnosed I had a neighbor who I found out had it and she told me she was going on her 10th year with it - I said I will NEVER have this for that long! I'm going to be the first who finds a cure. Well, what an optimist huh?

One thing I would caution anyone who is new to RSD is to not read too many posts about this. There are so many horrible stories out there on the internet that it can be depressing and scarey. This site seems to be more helpful and hopeful than most but I agree with someone who said that this disease, syndrome, whatever is different for everyone so don't think that just because one guy who has RSD has a morphine pump it means that you will as well.

Sam, your story just makes me want to scream, the way the docs have called you (and others) crazy and won't help and aren't educated about this.
Please ask for help. You WILL find it somewhere. You're in Colorado and I have found an incredible healer in Las Vegas area who says (and I've talked to some of his patients) that he can help with this syndrome. Maybe not CURE It but make it lots better. I went there for a month and my pain was WAY less - about 40% less- and I'm going back for another month. He uses
alternative methods of course - his name is Rob De Martino *edit* and he's incredible. If you have the money and the time you might want to check him out.

But don't treat yourself like everyone else has in your life; ie. not believing your pain or that you need help. (I'm a psychotherapist - can you tell??)
Treat yourself the way you would want a caring loving doctor would - find a good pain doc - not just a GP but someone who has experience with this disease and make it your job to find relief in your life - you're worth it!
I feel, after reading these posts, that I was very lucky to have been diagnosed by my podiatrist (my pain is in my left foot) within two months and have had care by a pain specialist who actually has RSD himself! Don't know how he does this.

Long post for my first one but I hope it's helpful. I am so sorry for what
you (and everyone else here) has been through and the pain we're all experiencing. Gotta go take an Actiq now (it's the fentanyl "lollipop" - I find it works best for me!)

Best
Roberta

Hi Sam (and Roberta!) I'm sorry you have CRPS obviously, but welcome to the forum and I hope you've found lots of useful info on the site...

Too many of us have a hard time getting diagnosed, and then a hard time getting the treatment we need This is indeed one heck of a disease, but as another poster said, never forget that what you see on forums generally represents the worst of any condition, simply because most folk who are doing well and coping well are busy living life and don't have the need of them!

I had problems with Gabapentin myself and had to go off it, but many folk find it really helps them. We are all different, both in how the disease affects us, and in how well certain meds help. Only you and your doctors can work out what is a good approach for you. And when it comes to CRPS, it's hard to know what is a symptom of the condition and what is a side-effect of a med.

Good luck as you trawl through the site and threads. There's loads of useful hints and tips and info on here, I won't repeat them all in detail (usually I would lol, as folk here would testify but I'm pushed for time today as my husband is poorly bless him. I'll just skip through the list...

Vitamin C 500mg every day to resist spread.
Unperfumed Epsom salts, in a bath or wrapped in a damp cloth.
No hot or cold extremes of temperature.
No ice anywhere.
Keep moving, even if only gently on a bad day. General exercise too.
Physio is important especially early on. Use it or lose it is our mantra!
Find the best docs you can, don't endure poor treatment.
Believe in yourself and your body, and stick up for both of them lol.
Consider seeing a counsellor if your life becomes very affected by CRPS. Talking is good
Read, read and read. Become as knowledgeable about the facts of CRPS as you can, so that you can make some sense of the muddle out there - not many medics are sure on CRPS at all, but some will say they know more than they do. Knowledge is protection.
Live as fully as you can and fight against losing your social or work life. It comes to some folk no matter how much they fight it, but all will tell you how much they miss it when they are no longer able.
You cannot protect yourself against all the pain. CRPS is painful anyway, even if you are still. In time you do learn how to push through a certain amount of it and get on with things again, but it's common to struggle in the early months. Never give up hope of change or improvement. I spent 18 months on crutches and in a wheelchair, but I'm on my feet and walking again thanks to a lot of work and determination. I don't know for how long...but it's good while it lasts!
Try meditation - I was sceptical but it's done wonders for me at times, and saved my sanity several times. Pain causes stress and stress is bad for you...

I have to go now. Sorry for any repetition/preachiness!! Take good care of yourself and I hope you have a better day.

Bram.