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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

I want to say Hello to all venipuncture RSD patients

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Unread 03-11-2008, 07:40 PM   #1
numb
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Default I want to say Hello to all venipuncture RSD patients

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
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Unread 03-12-2008, 06:21 PM   #2
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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
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RSD in right arm for 13 years, right leg for 8 years, left arm since May 2013, with full body symptoms and CNS.
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Dubious (11-15-2009)
Unread 03-12-2008, 06:58 PM   #3
numb
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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?
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Unread 03-13-2008, 05:23 AM   #4
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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.
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Unread 03-14-2008, 04:17 PM   #5
numb
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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?
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Unread 03-15-2008, 05:09 PM   #6
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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.
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RSD in right arm for 13 years, right leg for 8 years, left arm since May 2013, with full body symptoms and CNS.
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Unread 03-18-2008, 11:38 AM   #7
numb
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Kate,
I had another question regarding to the katemine infusion. Is there a limit on the infusion? Is there a long term side effect to our organ i.e. liver function, etc?
Lastly, you had mentioned sometime your muscle is weak and that you have trouble walking. Are you able to work? I am still trying to stay working part time but have taken a lot of time off trying different treatment. I am worried i may not be able to work if the my RSD continues to spread and get worse. One doc offers me a nerve block, but not sure whether or not i should try it again since i am at about 10 month from this monster. What is your thought?
By the way, i truly appreciate your advice.
Hope your pain stay low!
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Unread 03-20-2008, 05:40 PM   #8
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Hey

They don't know a lot of the longterm effects yet but on day 2 and day 5 of each infusion I've had, I've had blood tests (the worst part of the whole thing!) to check liver function etc. My 3rd infusion had to be stopped early because my LFT levels went through the roof, but two weeks later they were back down in the normal range again. They put this to be from the massive doses of antibiotics (both orally and thru iv) I'd had in the few weeks prior to the infusion, rather than to the ketamine. My whole system was just running low. The coma treatment has a lot more risks though, both longterm and shortterm, so thats very different.

Working? No, I haven't worked since this happened in 2000. I do study from home though, via the net. I completed an Human Resources Management course last year and am now doing a general business admin course. It keeps my brain going and I guess I feel I may as well be doing something now, so that when I do (not if, but when!) get on top of this, I can get a more interesting job.

On nerve blocks- I wasn't offered one by my first doctor as I wasn't diagnosed until the 7 month mark and he said they're most effective if done in the first 6 months. My next doctor decided to give it a go anyway, at the 1.5year mark, just because it hadn't been done before and is a pretty standard thing to try, but it didn't help me. I was glad I tried it though, even just so I could rule it out.

But everyone is different with this condition. Just because I don't work, doesn't mean you'll be the same. And a medication that works great for you may not work at all for me. We all want to have some idea of where we're headed in this journey and what to expect but its such a confusing condition in that respect because we all have different experiences. And when it all comes down to it, how we get our rsd, whether via venipuncture or a broken arm etc, is irrelevant in the end. We've just got to deal with what we've been given, research to no end (knowledge is power with rsd!), keep positive and keep our limbs moving as much as possible.

x Kate
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Unread 03-20-2008, 08:18 PM   #9
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Kate,
I admire you for studying at home. Maybe you can work someday. I am just curious. Have you ever file a lawsuit against the person who did your blood drawn that causing your RSD? I have been trying to find an attorney who can take my case against the hospital but with no avail so far. It took you 7 months to get the dx. You did not have your first block until 1.5 years. Did your nerve block ever help with any symptoms or not at all? In terms of the katemine, how does it actually help to calm the nervous system.
Sorry for so many questions!
Numb
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Unread 05-28-2008, 01:37 PM   #10
Annie Poo
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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
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