Hi All,
I am pretty new here. I have suffered RSD from an IV trauma for 9 months. I want to ask you the following questions.
Have your RSD spread?
Have you or someone that you know obtain a full remission from the venipuncture RSD?
Have your RSD gotten worse ovetime or remain about the same?
What treatments have your tried and any success from the treatment?
I am very concerned about my prognosis and what future will hold for me. It has spread from hands to feet to arms to shoulders to bones. Your feedbacks will be greatly appreciated.
Hope to hear from you soon!
Numb

Hi Numb

My rsd started from a blood test in my right arm in Nov 2000. Here are my answers to your questions:

Has your RSD spread? It spread up to my shoulders in 2002, after I developed shoulder impingement syndrome in that shoulder. In 2006 it spread to my right leg and foot, but that was after a spiderbite on that leg, so not a direct spread from the original venipuncure injury.

Have you or someone that you know obtain a full remission from the venipuncture RSD? Nope. I did have ten months of pain relief after my 2nd ketamine infusion, but that's different from spontaneous remission

Have your RSD gotten worse ovetime or remain about the same?
A bit of both- during the ketamine break I was able to do a lot of physio and now have great strength and movement in my hand, plus the allodynia is a lot less of a problem too. But the pain is still just as bad and having my leg involved has added to pain and disability issues.

What treatments have your tried and any success from the treatment?
I've had 4 ketamine infusions now (7 day awake treatments), 1 didn't help at all, 1 gave me 30 days pain free, 1 gave me the wonderful ten months, 1 gave me about 4-5 weeks of lower pain levels. I've also had a magnesium infusion, used tens, a range of medications (mscontin, lyrica, neurontin, endep, endone, temgesic, etc, all the usual ones), patches, nerve block, physio, a pain gel made up of ketamine, clonidine and amitriptyline... can't remember what else!

I've had a few periods where my medication regime has worked well for me and I've been able to do physio and live an "almost normal" life during the day then just have the evenings really bad. Some of these times have gone for a while, a few months at a time, but then all of a sudden they'll stop being so successful and we'll have to juggle things around again, or if I injure myself like I did in December last year when I sprained my RSD ankle. At the moment I'm going ok- have a fair bit of pain and problems everyday but not enough to bother changing my meds around.

I have, however, had to have numerous iv's and blood tests since this started, which is always stressful for me but I get them to put the numbing cream on the area first, which helps. But as I can only have ivs etc in my left arm (my good arm) its been punctured a lot And now it doesn't like needles but mentally I can cope with getting needles put in- I do some deep breathing while its going on, look away, relax my whole body etc.

I hope some of this helps a little. If you want to know anything else I'm happy to tell your my experiences.

x Kate

Kate,
Nice to meet you and thank you so much for taking the time shariing your experience!
I have some questions re: Katemine infusion. Were your katemine infusion the continuous 5 days awake procedure? Where did you have it done? How much did it cost? Did insurance cover it? You had different response from the katemine in terms of pain relief. Your best response was the 10 months pain free. Can you think of the reason why you had different response? Was your first katemine offer you the best outcome? Was the second, third or forth less effective?
Did you try the spinal epidural or lidocaine infusion?
What would you rate your pain from 0-10 at the present and what were your pain when you first had it?
Numb

Were your katemine infusion the continuous 5 days awake procedure? Well, I was in for 7 days, but they build up the strength over the first couple of days so you arent' at full strength until the 2nd day, giving you 5 days at that strength.

Where did you have it done? How much did it cost? Did insurance cover it?
I'm in Australia, and we're very lucky that ketamine infusions are covered by the health system, so all it cost me was the tv hire fee and the cost of buying chocolate out of the vending machine when I got the late night munchies!

You had different response from the katemine in terms of pain relief. Your best response was the 10 months pain free. Can you think of the reason why you had different response? Was your first katemine offer you the best outcome? Was the second, third or forth less effective?
Ok, here's the rundown:
1st in late 2004- 30 days totally pain free and it pretty much kicked the allodynia down to much lower levels from then on
2nd in March 05- 10 months of mostly total pain relief- a few flare ups here and there but always brought on by injury (ie burning my hand on the oven tray) and they went back down after a few days. I was able to fall pregnant during this time, too!
3rd- about 8 weeks after Hannah was born, in Aug 06- this didn't work and had to be stopped early due to raised liver function levels. But my drs don't think the ketamine did this, I'd had a series of nasty uterus infections after my c/section and had been on double antibiotics (and iv ABs in hospital) until a few days before that infusion started, so they think that was the cause.
4th- mid 2007 (I can't remember when, how bad is that?!)- gave me about 3-4 weeks of pain levels down at 2's and 3's, instead of constant 8's and 9's. I was happy to take that! But it didn't last long unfortunately.

Did you try the spinal epidural or lidocaine infusion?
Nope, haven't had any of those.

What would you rate your pain from 0-10 at the present and what were your pain when you first had it? Well that's a tricky one because I wasn't diagnosed with rsd until about 7 months after my original injury, so for that time all I had was ibuprofen, which as you know doesn't give a lot of pain relief for rsd. Now I'm on a fairly good combination of muscle relaxants, antidepressants and vitamins, plus temgesics or panadeine forte (codeine and paracetemol mix) for breakthru pain, so I don't find myself in that constant 10/10 like I did at the start. But my flareups are just as bad as back then. But like I said, my movement and strength is better because I used those pain relief breaks to build up my weak muscles.

In terms of numbers- At the moment the majority of my day is at about a 4/10. By dinner time I'm getting to 6 or 7 and by the evening when the kids go to bed I'm at about an 8 or 9, but I take a breakthru med if I need to, or I just wait it out as I take my other medications in the evening and that helps calm it all down so I have a chance of sleeping. It's not ideal but its the best I've had it in about 2 years (since the good infusion stopped). Even though I got some relief from the infusion last year, I wasn't mobile at all and didn't have the strength to stand up and walk around etc. Whereas now I only use my crutches when I leave the house, or I hold on to the stroller and lean on that. My rsd is at levels I can mostly deal with, so I can't complain.

Hi Kate,
Thanks for such a detail replys! You are lucky to reside where the katemine is paid for. I am glad that your RSD seem to be undercontrolled at the moment.
Can you tell me what is the meaning of break through pain?
Numb

Basically it just means any extra pain you get that your daily medications aren't controlling. So if you have a flareup and you need to take a short acting (ie 4 hour) pain medication, such as codeine/endone etc.

Hi Numb,

Sorry to hear about your IV experience. I can relate. I've had CRPS type II for the last 3+ years resulting from a venipuncture nerve injury to the sensory branch of my right radial nerve during blood donation. In response to your questions:

Have your RSD spread?
Yes. It was confined to my right forearm and hand for 10 months, then spread to my upper arm, neck, and head (right side only) within a week. This last fall, after ~2.5 years, it all of a sudden spread down my torso and leg, so now the entire right half of my body is affected.

Have you or someone that you know obtain a full remission from the venipuncture RSD?
I only personally know one other person with (non-venipuncture) RSD/CRPS. He's a friend of my dad's and RSD/CRPS in his leg completely went away over a course of months a few years ago. They still don't know why.

Have your RSD gotten worse ovetime or remain about the same? Symptoms have steadily gotten worse. Mine is strongly affected by cold, and I live in the upper midwest, so worsening/spreading typically has occurred in the early winter.

What treatments have your tried and any success from the treatment?
OT, biofeedback relaxation (very helpful), psychotherapy off and on, and meds (currently gabapentin + Cymbalta, previously carbamazepine). Gabapentin works fairly well, and the Cymbalta (newly added) is really helping. Carbamazepine controlled my symptoms a little better than gabapentin, but I was concerned about long-term side effects and switched back to gabapentin last year. My HMO doesn't have a pain clinic, and I finally paid out of pocket to see a CRPS doc at a different HMO's pain clinic last month. Money well spent, if only to get a definitive diagnosis, prognosis, and medication suggestions to pass along to my neurologist.

I am very concerned about my prognosis and what future will hold for me.
This is typical. Anxiety, uncertainty, and depression are the norm rather than the exception for people with RSD/CRPS. If you haven't already, see a therapist/psychologist that is familiar with chronic pain. Mine is great, and very helpful. I've seen him off and on for the last couple of years, mostly after mine has spread.

Also, regarding your last question to Kate about a lawsuit: In order to be successful, you would need to prove that your RSD was caused by the IV, with negligence involved, etc. I'm in the midst of litigation right now, with the end in sight. It will be nice to get it done with.

Hang in there!

Annie

Hi Numb,

Nice to meet you, sorry we have this in common...

Has your RSD spread?
Unfortunately, yes. It started in my left arm while donating blood October 2006. It seemed to slowly get better over time then re-erupted several months later. It spread within a year to affect the entire left arm, shoulder, neck, mouth, both hands, left leg and foot. I've been to every specialist there is, everything has been ruled out. 2 Specialists agree I have Complex Regional Pain Syndrome. They are a Rheaumatologist and an Orthopedic Surgeon

Have you or someone that you know obtain a full remission from the venipuncture RSD?
Unfortunately, I personally know no one who has.

Have your RSD gotten worse overtime or remain about the same?
I fear the worst...but I have had good days in between, sometimes several, so I look forward to those days and I savor them. It helps to have things to take your mind off it. I have developed my own pain coping skills throughout this ordeal, I've had to...but it gets more and more difficult as time goes on, I must admit. There is a certain pain level I have come accustomed to, sad to say...but I can tell it's there, but focus and block it out sometimes. There's a certain level it passes that is beyond ignoring that brings me to the point of desperation where my pillow gets tear stained at night..

What treatments have your tried and any success from the treatment?
I had tried Physical as well as Orthopedic therapy for several months. It did not seem beneficial much at the time, nor would it be now for me to go when I still keep my muscles just as active at home in the shower, it's the most comfortable way to move them, with the moist heat...less strain but still keeping them going. I'm at the computer a lot, so I'm moving my muscles that way as well. (Have to have a space heater on me, even in the summer)
I had an Epidural Cervical Injection, my CRPS "Specialist" thought that might be the problem, was hoping it was not CRPS. Talk about PAIN! Yes, I had a bone spur on my left cervical spine which is pressing into my nerve canal...but whatever he did made my pain worse all over all the time. Burning pain...miserable, couldn't sleep...torturous pain. Called his receptionist a few times in tears, took her forever to call me back with an appointment, like it took two weeks for someone to see me crying like this. So he sees me and sympathizes...and does the following
Took me off the Gabapentin I had been on for about a year or so and put me on Topomax and Tramadol. It worked for like a month and a half and I felt great, but now my hands are puffing and burning all the time! Maybe I need a medication adjustment? My neck has been fine since the injection for the most part though ever since...

I am very concerned about my prognosis and what the future will hold for me
Of course you are...and that is precisely why I'm so frustrated with my doctor and his insensitivity on the subject. He calls himself a Complex Regional Pain "Specialist". He deals with Chronic Pain. (PERIOD) My Attorney asked for his medical report after his injection and when he sent it to her, he wrote that he thought the Epidural Injection was successful and that he felt my Neuropathy was from an anxiety disorder rather than Complex Regional Pain based on my emotional state during my office visit with him. (While I was in extreme pain, sleep deprived mind you). He mentioned my talking about "fear of the future and how he feels I should seek counseling and used the word 'unstable' " and stated I was in a "fragile state of mind and he did not feel it was safe at the time to suggest it".
Now...I would like to point out...I simply sat there with tears in my eyes explaining my pain to him. He didn't even touch me or look at my limbs at this time. He didn't look, at my other doctor reports at that time either, he said he never received them, even though I had faxed them to his receptionist. Yes, I admit it...I told him I was worried the pain would never stop, it had spread, I was worried about my future, I had muscle loss already...of course I said that!!!!!!! You would think by reading his report I pinned him up against a wall or something...It's not like I was uncontrollably crying in his office, I wasn't. I was a woman in pain, that's all. (Perhaps he has poor memory recall?)

I remember once I spoke with Eric Philips when I first started having symptoms, when no one could figure out what was wrong with me. Even my Neurologist and Eric was nice enough to explain RSD to me and how to go about getting treatment etc. When I asked him what was going to happen with me he said "Anything can happen", I said "What does that mean?" he said "ANYTHING". And unfortunately he's right. It may stop or it may spread, no one knows and that uncertainty is the worst.

Well Numb,

Again it was nice to meet you. I hope this helped somewhat. I think coping skills are important, I hope you have found yours, I know for me they are what keep me somewhat hopeful...I still have some fight in me.


If there is anything I can do, please don't hesitate to ask!


Melissa



Love is stronger than pain!

In Sept 2007 I had a lab draw that was the worst pain that I have ever felt. It hurt so bad that I could not cry out, I curled in a ball to my left side and said repeatedly that "you have hit a nerve". She kept asking if I was alright. All I could say was you hit a nerve. She continued the draw until she was finished. She then asked again if I was OK, I said no you hit a nerve. I was rubbing and rubbing my arm. I was so mad that I left real fast. Thought afterwards that I should have walked right over and talked with my doc.

2 days later, pain no better so called lab manager, my doc called me back and said that if it does not get better in 6 months call him back for an appointment. I also called the business office of the clinic to see if an incident report had been filled out or if I needed to fill something out and was told that I ndid not need to.

Well, after time had past I called and got an appointment. Told the scheduler that I did not want to pay for the visit as I was injured in their lab. Oh my, they agreed to it. At the appoimtment my doc asked me if he had told me earlier to get a lawyer. I don't rementer that he did so again he looked at me and said, get a lawyer.

I am waiting now to get scheduled with a neurologist.
Here is my questions:
What should I ask the neurologist
What should I be doing prior to lawyer visit.

Sorry for the long post, first time actually getting this all writen down. Just a little scared by all this.
Judy
Oregon

That's exactly what I told the phlebotomist repeatedly when it happened to me. Felt like a bare electric wire was put on my arm.

Prior to seeing your lawyer for the first time, you need to sit down and right out exactly what happened, to the best of your recollection. What happened. Who did you talk to and when. What did they say. What were your symptoms then, a week later, a month later, six months later, and now. How has it affected your life (work, family, hobbies, etc.). What doctors have you seen for the initial injury and since then. What did they say. Your lawyer can request your medical records.

You will be better off from a litigation standpoint if (1) you have good documentation (i.e you kept records of who you talked to and when, and what they said), (2) you sought medical treatment soon after the injury and have seen doctors multiple times since for symptoms resulting from the injury - this goes a long way toward proving causation, (3) you can document actual damages from this, and (4) you are able to prove actual negligence - i.e. your lawyer can show that the phlebotomist did not follow the standard of care for drawing blood.

Anticipate that pursuing a settlement or lawsuit from a venipuncture nerve injury is likely to take a long time. I saw my lawyer (who is also an R.N.) the first time a year after the injury, and because my symptoms were still "evolving", he said that we needed to wait another year to see where I was at after 2 years. Then it took another year to get all of the information we needed, since one of my (retired) neurologists was ill and inaccessible. Right now we have a lawsuit filed, but my lawyer is still working on negotiating a settlement with the claims adjuster. There's a delay as their physician consultant reviews my extensive medical records from this.

My lawyer tells me that I have a good case because the standard of care wasn't followed, I have clear damages, and I documented everything that happened starting right after the injury (thanks to long-ago advice from my mom, who always told me stories from when she was a r.n. and hospital administrator). My mom, who negotiated lawsuits for her hospital, has told me repeatedly that I have a very good case.

So, here I am, waiting for this part to end. It's not the money at this point. If I wasn't suing a "national blood donation organization", I'd be asking for a helluva lot more. It's not the money. Naively, I want them to change their ways. I want this settlement or lawsuit to catch their attention. I want them to train their phlebotomists better so that blood donors have less risk of "adverse donor events". As a scientist, I've really dug up a lot of information, and am pretty ****** off at what I've learned about the lack of protection for blood donors in general.

Ok, now I'm done venting.

Good luck with the lawyer. Oh, and I hate to even say this, but be prepared that they may not take your case if they don't think they will win.