new member
 

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.

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 :p) .

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

Nice to have you here
 

needles, etc.
 

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

Hi Annie
 

And welcome. Please grab a chair and pull up to the circle. Feel free to offer up any information you feel might be of use to us. We are always open to receive handouts. (That includes food too) :D Research is always such an important part of RSD/CRPS because of the fact that it is still rather new in the eyes of alot of physicians. We sometimes end up educating them it seems. Plus there are soooo many facets to RSD/CRPS that we are constantly searching and looking for information and sharing what we know and learn. Once again welcome and thank you for being here! Chin Up!

Mark :)

Thanks
 

Thanks for the warm welcome! And Kate, thanks for the hand-stretching ideas.

Annie

venipuncture nerve damage
 

I've got damage to the median nerve after a venipuncture ( blood drawing ) 4 days ago. The pain in my arm is going worse and I wonder if anyone can tell me what will happen next, who I should see and what is the long term prognosis Thank you very much.

wintiskinti-
Hello and welcome,
A new thread made for your question.
Did you have RSD already? before the venipucture?

here-
http://neurotalk.psychcentral.com/showthread.php?t=7266

I'm still in the process of learning more about RSD
{ I don't have it myself but I do have TOS}

Is that normal and usual to have weakness and grip problems with RSD? Is it because of the swelling and pain, or because the nerve is not working properly?

I ask because that part sounds a lot like TOS/RSI - weakness of hands and grip/ loss of finger coordination, sometimes even a "claw hand"

Of course there is more to it than just that.
I'll post some TOS links that describe more of the symptoms ,better than i can, and shows some positional testing photos.
TOS info:
http://www.nismat.org/ptcor/thoracic_outlet/
http://tos-syndrome.com/newpage12.htm
http://tos-syndrome.com
http://www.acofp.org/member_publications/thoracic.htm
http://www.cwce.com/feinbergarticles/tos.htm
http://www.doctorellis.com

If these sound familiar to you also there is more info on our TOS forum-
http://neurotalk.psychcentral.com/forumdisplay.php?f=24

It seems RSD and TOS and fybro can share many similar sx and tx - they overlap quite a bit.

for wintiskinti
 

Don't bother seeing your regular doctor (GP, internist, etc.) unless you need a referral; you need to see a neurologist ASAP. Be assertive about getting an appointment soon. If there is more than one neurologist available, ask for one that handles patients with CRPS/RSD and/or peripheral nerve damage (if the receptionist doesn't know, ask to talk to one of the nurses, who should be able to tell you which neurologist to see). If indeed you have CRPS/RSD due to venipuncture, prognosis is variable, but early treatment is key. Many of these cases get better in a couple of months, and many last years and years. It's extremely important that you see a neurologist as soon as you can.

Keep detailed notes (names, date/time) about every contact you have with anyone from the place where this happened. Take time soon to write down exactly what happened at the time of the injury and in the days afterwards, and start keeping track of the progression of your symptoms. These notes will also be very helpful to your neurologist. Keep notes of every doctor's appointment. A high percentage of venipuncture CRPS cases result in insurance claims or lawsuits. If your symptoms are still there a month from now, or are getting worse in the next couple of weeks, find a lawyer.

My injury occurred during a blood donation, and I waited almost a year to see a lawyer. Because I'm a nice person, I didn't want to sue the (nationwide) organization involved. However, when a person from the organization suggested I hadn't complained enough when it happend (which is bull!), basically insinuating that it was my fault, I was finally angry enough to get a lawyer. Fortunately, at the recommendation of my mom, who is a nurse (and who recommended I get a lawyer from day one), I kept excellent records.

I wish you very much luck. Stay optimistic. Stay informed. Let us know how you are doing.

Annie Poo

Hello there..
 

Hi and welcome Annie and Wintiskinti..

I know you will find a great bunch of people here feel free to post your thoughts, questions, and feelings.. we are here for you to be of help and support, as you will find that you are a comfort to others here too.

The research potential here is staggering, look back through the posts and know that your best bet on this journey is to help yourself.. by that I mean don't wait for your doctors to answer your questions, you will find that you know more than your GP after a few days on this forum.. do your research and bring it to your physician.. you are your own best advocate.

Again a huge welcome
Soft hugs,
Sandra

Heya

Welcome! About the muscles tightening - I have botox on my hands/shoulder/neck/thumbs to reduce the spasm - works ok. splinting also helps - I have solid night splints and day splints to wear to stretch the muscles in my arms out... FUN FUN FUN..

warm wax does help etc.
when I first got this I had no use in my right arm at all - but with physio I got a lot back medium term (had an EMG and am now an RSD quad... almost no movement at all anywhere- after major flare....)

Anyway Welcome - like you I can get pubmeds etc - doing a science degree atm.

Take care -

Rosie xxx

rsd/crps
 

Hello Annie Poo and everyone else, Thankyou so much for your reply. I've actually got more information from you than from the doctors I have seen so far. Following your advice I am seeing a neurologist today so THANK YOU THANK YOU. After reading your posting I sat down and made notes about the venipuncture, the nurse who performed it almost fainted and had to sit down in another room! I am only just beginning to understand why. The shooting stabbing electrical pains are becoming almost unbearable and having just had IVF treatment I am unable to take most of the pain medication.

I would be very grateful if you could tell me have you had any surgery or medical interventions besides drugs to ease your pain. Though I am trying to be optimistic I am a realist by nature and was wondering what the course of this injury usually is ie: what should I expect over the next few weeks/months.

Once again thankyou Annie Poo for your advice and for wishing me luck. I will definitely let you know how I get on with the neurologist. Thank you so much.
Wintiskinti xxxx

I'm so glad you're seeing a neurologist today.

I wasn't diagnosed right away, and have not had surgery. I've been treated with psychotherapy (biofeedback relaxation technique to reduce irritability and allow me to concentrate on other things), occupational therapy (to control contracture of my right hand), and with meds (anticonvulsants carbamazepine and/or gabapentin).

Let us know what your neurologist says.

Annie

To answer another of your questions, I can't really tell you what to expect, since no CRPS patients experience the same type of symptoms, progression & severity of symptoms, spread or lack of spread, and length of time before symptoms go away (if they go away).

Good luck with your neurologist. If you get the sense that he/she is not taking you seriously, tell them that you would like to see another neurologist.

If you haven't already had one, you will probably have a nerve conduction study sometime soon to confirm the location of the injury (even though it's obvious since it was caused by a needle). I'm assuming your diagnosis of median nerve injury is based on location of symptoms(?).

Gotta go,
Annie Poo

RSD Symptoms?
 

Hi, I've written what happened to me in the new member introduction section, but I feel like it's best here...

The symptoms seem all too familiar to me...I'm glad I'm not the only one, but am so sorry you're going through this nightmare as well.

Here's what happened.

I honestly wouldn't tell people to not donate blood; I think it's a wonderful thing to do and I've done it many times before without incident. I think it's okay to ask questions though before someone sticks you! "Like, how long have you been doing this?" Or to make sure the person with the needle isn't in a hurry, which definitely was the case in my situation. (A blood drive at work)

Please allow me to vent. I just can't seem to get passed the total disregard the Phlebotomist seemed to have when she admitted she hit my nerve or muscle which caused me to jump out of my chair in agony. I'm furious...even a year later as I sit here with my swollen arm which feels like my bones are shattering and this burning neck pain. She just gave me an ice pack and asked if I was okay and told me to go in the hall at work and help myself to some pizza. I had no idea what had happened, but it didn't seem serious, (although it hurt like hell). It seemed quite common and of no concern to anyone working at that blood drive. No special instructions of warning signs or courtesy follow up call etc. Had I known that I would have these symptoms a year later and it was never to get better I would have sought help immediately because my research on the internet has mentioned the sooner you can identify nerve issues the less chance of having permanent damage.

It seemed to be getting better...but during the months following I would still get that certain "sting" I felt when it had happened in that spot. I thought it was just slowly healing etc. No swelling until about 6 months later. I woke up with my hand and fingers numb, then the pain in my arm came back full on and by the end of the day I was swollen. The only thing I could associate the pain to was that needle, because that's what it felt like! My Primary Dr. had doubts I had these symptoms from blood donation, but he suggested I see a Neurologist who I though was going to be my angel of relief. He put me on nerve pills and sent me for an EMG as I was having burning flesh pain on the outside of my arm and he detected some weakness in my left hand. The EMG just showed minor neuropathology at the Median nerve at the wrist. He was sure it was Radial...stumped. He sent me for an MRI, you know to see if there was fluid or a needle tip which broke off somewhere. He went on vacation, came back, didn't look at the results and said "I have a feeling this will get better over time". When I reminded him that it had been 7 months now and it seemed to be getting worse, he admitted..."I just don't know, so maybe I should send you to an Orthopedic Surgeon". Okay, fine...so I go to the O.S. who says "there is clearly something wrong, it doesn't seem like Carpal, it doesn't seem like Bursitis or Tennis Elbow". I ask if it could be RSD and she replied that it couldn't be because I don't have discoloration. She prescribed me Physical Therapy twice a week. I asked if before we do that if I could check to see if I had a clot in my artery, something I read which might cause this swelling etc. I was just trying to rule things out, and I've been doing a lot of research (as you can probably tell). She sent me to a heart specialist and they conducted an ultrasound on my left arm artery and found it to be clear. So I then called my Primary Care Physician again and just asked if he could order a blood test to test my sugar levels. Reason:I had Gestational Diabetes 7 years ago with my daughter and about a year after she was born my blood sugar was high and I was able to reverse it by losing a bunch of weight. My results came back completely normal.

You know...at this point you WANT something! Because having something that nobody can pinpoint just outright sux!

I was worried about physical therapy...because too much activity really hurts my arm. I expressed my concerns to my boss, she suggested I see an Arm/Hand specialist. I called the receptionist for his office and explained to her my symptoms. She called back within 5 minutes and told me he wanted to see me the very next day when he wasn't even scheduled to come in AND he was booked solid for 2 months. So I felt like "wow, he may be able to help!" He spent over an hour with me in his exam room. He also said he felt it wasn't RSD because there was no discoloration. But he really talked about options and what he felt might be the best way to get the arm un-swollen which would hopefully relieve the pressure off my nerves. He asked if I would like to try a Cortisone shot which actually took the swelling down for like a day. Then my arm puffed right back up...refilled with fluid I guess...I don't know. I've been going to Occupational Therapy, the OT who is trying to help me is very nice, but the sessions do not seem to be working. In fact, I was crying like a baby just two hours ago.

I'm just so frustrated...I've turned into a bitter person when I've always prided myself on being kind and generous. It just seems like no one can really help me.Hopefully someone here can relate or help to pinpoint a cause for my discomfort.

I just want it to be over...there are so many things I want to do. I want to play the guitar, I want to type without my forefinger going numb. I want to wash my hair or put it up without feeling like my arm is cracking.

I feel all alone, like there is no one out there who understands. I'm afraid to talk about it to much, I'm afraid people will think I'm a hypochondriac. I mean the doctors know something is wrong but they don't know what exactly. I have physical evidence of there being a serious malfunction here! The OT performed strength tests on me...my left hand/arm...very week. The back of my neck, puffy and on fire at times. (Like this evening) Swollen arm...but no one knows why? Can't I just get a full body MRI or something????

At this point I've contacted a lawyer...I just don't know how much longer I'm going to be able to continue to provide along side my husband for our three beautiful children and two dogs.

Okay, I'm done whining. Sorry

hi MMoran

good that you have copied your introductory post over here as I am hopeful that the RSD members may have some insight for you on what you have been experiencing

Cheri

Hi MMoran,
 

My thought would be to see a pain management Dr. They are usually pretty good at diagnosing RSD. They aren't always good at taking care of it but they might be able to diagnose it if it is. Also you might try a learning hospital. I don't know what state you are in but a University Hospital might be able to diagnose the problem.

It took about 3 years for me to get it diagnosed and it was a hand surgeon that diagnosed me after seeing 3 Neurologist, a Rheumotogist, 2 PM Drs. and too many more to name.

What I have noticed if a person lucks up on a Dr. that is up on RSD then they can diagnose it. Like I said the key work is lucks.

My PCP takes care of my Pain Mangagement. After seeing all of the Drs. I saw and getting diagnosed he's the only one that was willing to learn about it and help me with it.

I have had blocks, which reminds me an Anesteolgist is a good one to go to . They can do a block to diagnose RSD and the block may even help put it into remission. I had 3 and they helped mine. If you could get your Dr. to send you to an Anesteologist that does blocks then that might be the answer for you.

Others will have more advice to help you also.

Like you, I about went nuts until I got my diagnoses and started getting care to help with it. RSD is one of the most painful things a person can live with in my book.

I do hope you finally get the help you need to get your diagnoses and the help to deal with whatever you are going through.

Ada

Ada,

Thank you for your support. I will definitely check into that right away!

I live in Massachusetts, we have a Neurologist in Boston who has written about RSD after needle injury, but I canceled the appointment because I found someone locally which turned out to not so much about RSD. But I'm thinking of calling him again and I will check out getting a pain management specialist on my side as well.

Really good advice! I'm so glad these methods of treatment were affective for you.

Thank you once again! ;)

I hope everyone on here finds the freedom from pain they deserve.

My heart goes out to everyone!

:grouphug: