I've been reading the Brain Talk 1 postings for RSD, but had problems registering. So this is the first time I've ever posted anything like this. It's useful to read about the experience of others, and I wish you all well.

I have CRPS type II from a venipuncture injury to the sensory branch of my radial nerve, which occurred a year and a half ago. It's spread up my arm and to my right trunk, neck, and right half of my face and head.

My symptoms are predominantly burning and aching, although I have pins & needles, occasional shooting pains, skin sensitivity, especially to cold, muscle contractions in my right hand and excessive sweating in my right armpit. Severity really varies, although my symptoms are definitely worse in cold weather, so I'm dreading winter. I was on gabapentin (1200 mg/day) last summer, which worked well for the symptoms but shut down my brain. I'm currently on 800 mg/day tegretol, which helps somewhat with symptoms, but has really slowed down my metabolism. I'm considering going back on gabapentin because I'm nervous about long-term complications of being on tegretol (liver issues, osteoporosis, etc.).

My neurologist is optimistic that this will heal, but I figure this may be a long term problem because it's worse than last year. I know that overall, the prognosis for venipuncture CRPS type II is not good. OT is keeping my hand functional, and I've worked with a psychologist to learn biofeedback techniques to reduce how this affects my mood (irritability with my kids, etc.). I've had good luck using ThermaCare wraps on my forearm in the winter.

After reading about the experience of others with RSD, I consider myself extremely fortunate that mine is not a severe case, (although that doesn't mean I'm not ****** off about the initial injury). I'm also fortunate that I have very good insurance, and am able to work, although I'm right handed. This has certainly been a learning experience.

By the way, I'm a scientist (not in neurology), and can access scientific publications through Medline and PubMed. I think I've downloaded most RSD/CRPS journal articles published in the last 10 years, and have a pile about 8 inches deep on my desk. Let me know if you've heard about a certain paper and haven't been able to access it. I may be able to help.

Take care.

annie,

hope that soemthing u find here will be useful to u.....many, many thx for the offer to find papers if we need them!

welcome aboard.

Hi Annie Poo and welcome

Hi Annie,
and welcome! Yes, your situation sounds all too familiar. With most of us it's a question of trial and error for medication - as Liz says, somewhere in the posts, much of our discussion is comparing notes.

I need neurontin, but simply can't function on the "normal" amount, it makes me feel like I'm tripping (us children of the 'sixties, how would we know about that? ). So I've lessened it over time to the point where people would say "Why bother?" - but for me, taking a small amount really helps. It makes the difference between the pain being in the forground where I can't cope, or the back ground where I can.

So you might give that a go. I take about 500 mg per day. I split open one 300mg capsule and dissolve in a little water (it's water-soluble) then take a little throughout the day, then 200mg before bed. Before anyone screams at me, yes I know this isn't proscribed, but it works well for me (so there ) .

Well, your very kind offer of information assistance will be invaluable to us, I reckon. Thank you very much.

Take care, all the best.

Hi Annie!

I am REALLY pleased to meet you! My rsd started from a venipuncture injury six years ago and I've never chatted with anyone else who's had this happen (although I know there are plenty of other cases).

Mine was from a blood test in my right arm- inner elbow. They believe the needle hit the median nerve. It now affects me from fingers to the side of my neck, and front and back of shoulder. Then earlier this year I was bitten on my right leg by a poisonous spider and my rsd spread to there.

I've had long periods of time where I couldn't grip anything, or straighten my fingers etc, but physio really did help and I got my grip back and movement back etc.

But this last month (since my last ketamine infusion) its all started back up again and my grip is going. So I've started physio to get on top of this before it gets worse. So hang in there with the physio, it will help at least stop it from getting any worse.

How do you go with needles now? I had to see a psychologist to teach me breathing techniques etc to be able to get a needle anywhere near me, I was THAT scared of them, and scared of the pain I got with the one that started my rsd. I've had to have a lot of blood tests and IV's in the last six years, but I now kind of zone out while its being done, and just concentrate on breathing and kind of meditate I guess till its all over.

Anyway, welcome to the forum!

x Kate

Welcome Cake. It is always nice to meet new people, but sure wish it wasn't due to RSD.
I am happy that you are able to work.

I have that same sweating problem.
Embarrassing.
Xanax helps me by slowing down the overactive sympathetic nervous system. When it wears off, sweating starts up like mad.
After a lot of blocks the RSD areas have gotten dry and cracked with peeling shiny skin with blisters. Lots of bruising too.
Sounds ugly, but no one ever said this was a pretty syndrome.
Hope you feel comfortable here.

Take care,
Hope

Hi Kate,

Yep, your story sounds familiar, although my venipuncture injury occurred during a whole blood donation, believe it or not. I'd donated for two decades without any problems, and then this happened. I was never scared of needles, but now the thought of someone putting a needle in my right arm almost gives me an anxiety attack. Left arm is better, although I also have to concentrate on relaxing. If you're really anxious about a pending needlestick, try this: Close your eyes, slowly relax each muscle from the head down, then imagine that arm is not attached to your body. Don't let the phlebotomist rush you.

Like you, I initially had problems with gripping, weakness, and numbness in my hand and forearm, but am now having problems extending my fingers. I'm right-handed and need dexterity in my fingers for my job. My neurologist hadn't seen anyone with an injury like mine, and it took a while for him to understand that it isn't stiffness in my finger joints as much as it is tightness in the muscles. I tell him that it feels like someone has hooked big tight rubber bands from the lower part of each finger (and thumb) to a central point in the palm of my hand. Mine is much worse when the hand is cold, and my OT recommended using a paraffin bath to warm up the hand before doing stretching exercises. So, I got a little one (~$20 at Walmart) and have it in my office at work. They evidently use them for arthritis patients, and it also softens the skin. After it's heated up every morning, I dip my hand in 5-7 times, building up a layer of wax and heating up my hand. I then quickly put a plastic bag over it, then an "oven mitt" kind of thing over that. After I let it sit for ~5 minutes, my hand is nice and warm and I can really stretch it out. The wax layer comes right off when you remove the plastic bag. It sounds weird but really seems to help, especially with my thumb.

By the way, I thought I was a strong person and was handling all of this, but realized this winter that it was affecting my mood, my work, and relationships with my family. So, I saw a psychologist for about 3 months this spring. He is a great listener and taught me a relaxation/mood-elevation technique that I use frequently. It doesn't lesson the symptoms, but helps me function and be less irritable, especially when they are flaring up. I won't hesitate to go back and see him if I need to. So, if anyone out there doesn't want to see a counselor because they don't think they need to, be honest with yourself. Getting therapy doesn't mean you're a wuss. Look for someone who has experience with chronic pain patients.

My husband, family, and co-workers have been great, but as many of you can probably relate to, in the back of my mind I am concerned that if I "whine" about this too much, I'll drive away my support system. So, I talk about it enough to keep me sane without driving everyone else crazy. That's why I think this forum is great. You guys understand.

I'm more realistic with myself about how this affects me, too. My motto is "I know this really affects me, but I won't let it define me".

Kate, I'm sorry to hear your symptoms are worsening. Although I'm a relative newbie to all of this, I remember how scary it was when the symptoms worsened and spread. I hope PT is helpful for you again. Cute baby! I'm amazed that you can handle this and four kids under 8. I have two under the age of eight, and they keep me hopping (which is probably a good thing).

Take care,
Annie Poo

Hello Annie and welcome to a great group of people.

Your suggestion to use warm wax for stiff fingers is something I will try. I don't know if RSD is spreading to my hand and arm but I am having difficulty now in those places. Anything that can keep you moving is worth a try.

Regards, Lil

Just Updating

Hi Annie,

My husband is my carer, and a stay-at-home-dad, so he does most things for the kids and the house etc. I'd be in big trouble otherwise!

With the fingers, I get that too. I used to sleep with them splinted straight. I cut the lid of an ice cream container to the shape of my hand, then at night I'd splint it to my hand with a bandage (not too tight) and so I was able to keep my fingers straight for hours at a time. Some nights it hurt, other times it was fine. I'm sure this helped a lot.

Anyway, itsjust started trying to contract again, but physio suggested a good exercise (and this helps my wrist too because my wrist only bends back halfway, not 90') and thats to put my hands in the prayer position, with my elbows out to the side, and just go up and down so the wrist position moves, or roll my right fingers over the top of my other hand.

Or another one is to put your hand on your knee when you're sitting, then slowly slide it back, that way it goes from a bent position to straight. These are both easy exercises you can do anytime.

x Kate