Maryam71,

Don't take this laying down! If you have not done so already, get aggressive with persuing pain managment; blocks , meds and whatever else you can grab. You are in the golden zone where you at least have a fighting chance to attack this! After a few months, it may be too late to do much other than play catch-up...

i donated blood two days ago, and the tech/med assistant (positively) hit a nerve. the bag was filling up fine but by almost the end, she said that the it was running a little bit slow and decided to move the needle to somehow facilitate faster blood flow. as she moved the needle, i felt electricity running down my arm to my fingers,i said it hurt then she let go (with the needle still attached). she asked me if the pain is gone, i said somehow just dont touch it and just let the bag finish up. as soon as the bag got filled up, i guess, she was scared so another tech took her place removing the needle and bandaging me. anyway, i went home (sore with intermittent jolt depending on my arm positioning) but i ignored it. i just thought that it's no big deal and that it'll go away. the blood draw was done on my right arm, too, which makes it worse since now i can't even lift a spoon to eat with my right arm. well, it's been two days and the pain seemed to have increased. im sorry to sound a little too concerned being that it has only been almost 3 days and that i've read a number of posts here of people suffering for years. but i am really worried. i have no insurance at the moment. am still in school studying to be a nurse. i am afraid that this might be of a bigger problem to me later on. are there ways to help alleviate the pain? will movements on the affected right arm cause further damage (i am right handed)? any help is greatly appreciated...(especially cause just typing this took me about 20 minutes with my left hand)

Hi. I am new to this site and was just diagnosed with rsd/crps. I was at work and went into a quick squat (and they always say exercise is good for u...hahaha) and tore my popliteus muscle (muscle behind the knee) and tore a ligament in my ankle (inside portion) which I didn't find until 3 months after the injury. My foot and leg filled with blood and fluid, which in turn damaged my nerves. Anyway, I came out of the fluid left with rsd/crps of my right foot. I have been going to therapy and now going on the 5th month, am not sure if this is going away. I've been reading eveything that I can read on this and it seems that no certain regimen is a protocol for everyone dealing with this horrible beast. I'm now starting to feel weakness and pain going up my leg, not sure if that is the symptom of spreading or not???? Not sure what to do or where to go from here. Trying to get some blocks and go do more therapy. Anyway, I'm trying to read all of ur stories (which give me some hope) but it's hard to retain all the information because I have so much on my mind....very nice to meet u all and hope all get a break from the pain. Thanks!

Hi! I'm so glad to find a place to communicate to other RSD Patients. I developed RSD after an elective foot surgery, & suffered thru bilateral pain, bur, crushing sensations for 5 yrs..always watching the internet, & chasing down the doctors working with the ketamine infusin treatments. I was treated at Drexel Univ by Dr Schwartzman in a 5 day in house infusion, with the pain disappearing after 6hr of the infusion starting. The pain was gone for 9 months, during which time I received the protocal for outpaient boosters from a San Diego MD,anesthesiologist, at his outpatient surgery unit. The good news is that I got him started on setting up this program here on the west coast, and he has set up the billing with insurance companies to have it covered. Yeah!!! I'm sure there are many patients that are ready to try this treatment instead of going on with their high doses of opiods, steroids, epidurals, morphine pumps, back pain stimulators etc...all of which end up failing & causing worse problems. I hope many of you will look into the ketamine infusion success stories..there are many good articles at RSDSA.org. Good luck..I hope I can help anyone!!!858-547-9991...Barb:grouphug:

Barb,

It's great you were able to do something for other patients. However... with RSD, you know it's not one size fits all. It's hard enough to find something that works for us as an individual, so I would certainly not generalize and say that Ketamine is THE one and only treatment and we should all try it. That's a very dangerous thing to say.

I was diagnosed with rsd 3 1/2 years ago in my left arm. After 2 very painful years I slowly went into remission and was feeling great. I just had very minor surgery on my foot and I have a feeling it came back. I have very painful burning on my foot, but the opposite side of where they operated on. I think my doctor thinks I am crazy because he says I am not suppose to have any pain. I am going to wait a few days but my foot is so sensitive that I can't even walk on it. Has this happened to anyone else? the pain is so intense.

My huband suffered a major chemical burn to his leg in 1995 - It was a work related injury. MSDS sheets were not available, he sat with this stuff on his leg for more then 24 hours. We watched the acid literally boil under his skin. It was a horrifying experience. We thought that was the worst of it until about a month later he was diagnosed with RSD. Then the real horror began. He fought for months and years through therapy, blocks, meds with horrible side effects....through lots of work and a pain clinic - a few years ago he was able to "control" the RSD. When I say "control" the RSD I mean he still delt with pain, but the RSD was not controlling him. We started to have a somewhat normal life again after years of suffering.


~ Our New Saga ~

Hubby found a job driving/transporting people (kind of like a taxi but for employees of a specific company) - Vehicle was set up decent for his leg (plus he now has brace) and driving did not effect his leg OVER ALL but there were days when he could not work and delt with pain, cramping and discomfort. He delt with it as best as he could as we have 3 children and he was always our primary wage earner, he felt if he did not do something he was not doing his job as a father and husband. (That male pride thing - Even though he suffered...)

After working this job for a year (some months putting on 10,000 miles or more) he developed ulnar nerve damage (your ulnar nerve is your "funny bone") in both arms. This vehicle he was working in did not have any ergo for his arms, thus the vibrations from the vehicle on roads and on "off road" areas like by railroad tracks and the long miles resting his arms on the side of the door and arm rest caused the casing around the nerve to be crushed around the nerve and there are also other areas of compression.

He was diagnosed with the Ulnar Nerve Damage in early April of this last year 2006 - They did physical therapy for months, tried braces, etc and finally had to resort to surgery (Ulnar Nerve Transposition)....They started with his right arm first.

We were told there was a 50/50 chance that he could develop RSD in his arm - But as hubby had another surgery (unrelated & approx 4 years ago) with great success we were looking forward to positive results and no RSD flare up.

We could not have been more wrong. Surgery took place in October and after a few weeks of therapy with little to no success - he was diagnosed with RSD in his right arm.

Needless to say all further surgeries have been put on hold (so he still has damage to his left elbow and both wrists...)

And here we go again...........

Hubby is currently on:

1.) Ibuproferen 800
2.) Hydrocodone 7.5 3x's daily
3.) Lyrica
4.) Cylexia
5.) Zanaflex (is that how it's spelled) for muscle spasms

He is in physical therapy 3 days a week too and we hope we can put this monster down again.

As far as our family goes, our oldest remembers the past RSD, and now hearing of a new "round", and also dealing with dads ulnar nerve damage has been hard on him - Our youngest 2 did not really experience the early RSD but are trying their best to cope through this new round of medical problems and now RSD. I personally find comfort here and through research. I work (although it scares me some days to leave my husband alone while the kids are in school) for sanity and financial reasons. I come online and here as often as possible. Knowledge is power I say, we WILL find something to tame this beast.[/QUOTE]

My wife received ketamine infusions with no relief. As stated it works for some not others. I do believe if one was to elect to receive infusions, earlier the better.
Kaybee, If I were you I'd would have your husband file for social security disability insurance ASAP. If he qualifies you'll have some income and medicare coverage and if he's able to work in the future either full or part time he can, with a reduction in his monthly check.

I have suffered for 7 years with RSD. I have had numerous procedures, was in a Rehab Hospital for 3 months after a MVA that started this entire nightmare.

Here is my problem now: I have found a combination of medications that actually increases the quality of my life & makes life worth living. Problem is: The doctors (Pain Management, Neurologists, etc) are all afraid to write Rx for Morphine. My best pain relief and relief of the other irritating RSD symptoms comes from taking a maintenance dose of Morphine Sulfate EXTENDED RELEASE (MS CONTIN CR) The problem is, I can Not find a physician in the Houston, Texas area who is willing to at least see if this combination works.Here is the combination which MUST be kept to or you are wasting time:
Morphine Sulfate EXTENDED RELEASE (whatever dosage your MD wants to start you on - it can be changed easily enough)
Morphine Sulfate IMMEDIATE RELEASE (for Breakthrough Pain)
An Anti-Seizure Medication - I take Klonopin 1mg BID
An Anti-Spasmotic Medication - I take Flexeril - but you must build up a level & keep that level in your body or it will not work.
An Anti-Inflammatory Medication - I take Lodine 400mg. It is reasonably priced and works.
I also try to keep Phenergan tablets on hand. IF I let my pain get out of control, Phenergan is the only thing that will control my vomiting & prevent me from passing out.

This Works - or at least for me! BUT ... I CAN NOT FIND A DOCTOR IN THE HOUSTON / GALVESTON AREA WILLING TO WORK WITH ME IN WRITING THE SCRIPTS. AND MY DOSES ARE NOT EVEN LARGE!
ANY HELP???
DOES ANYONE KNOW OF A PAIN MANAGEMENT PHYSICIAN WHO WILL ACTUALLY LISTEN TO THEIR PATIENT & HELP THEM WITH RXs AND NOT JUST WANT TO IMPLANT PUMPS & NERVE STIMULATORS? iF SO, PLEASE ANSWER THIS. I AM AT MY WITS END. THANK YOU.

I've suffered from RSD for over 7 years. I am sorry to tell you physicians who are knowledgeable about RSD are far & few. Many "claim" to know about the condition - but they don't.
ONE BIG TIP I CAN TELL YOU & PLEASE BELIEVE IT: DOCTORS WILL LOOK YOU IN THE EYE AND SAY "NARCOTICS/OPIATES DO NOT WORK ON NERVE PAIN" That is WRONG! I could not function at all in the world without Morphine Extended Release. I use the extended release because I am NOT a drug addict wanting a quick rush from an Immediate Release Compound. I do have a prescription for Morphine Sulfate Immediate Release, but that is used only for Breakthrough pain. I hate to sound so gloomy, but it is a tough road ahead of you if you have only had 6 months of this. My best advice - find a physician who is willing to LISTEN TO WHAT YOU THINK WORKS BEST (after trial Rxs) AND STICK TO WHAT YOU KNOW HELPS. DO NOT LET THEM SHAME YOU INTO THINKING YOU ARE A DRUG ABUSER FOR WANTING A NARCOTIC TO HELP YOU LIVE A SOMEWHAT NORMAL LIFE STYLE.
GOOD LUCK!

I am so pleased to have found this forum. I was diagnosed by my GP after visiting 2 other GP's in the Practice and an A & E Dr. So 3 months after first seeking help, I'm eventually on my way with a brilliant GP who has a great sense of humour but cares about getting me the best treatment.

The CRPS started in left toes and foot and has now spread to the left knee. I went today and told the GP that my knee was now painful after walking leisurely for an hour the other day, she advised that it might just be that the CRPS spreading unfortunately. She referred me for an Xray straight away and booked me an appointment to see a consultant in a private hospital through the NHS, I had an appointment for 8 weeks and asked if I should cancel it and she said no as I might want to get a second opinion.

I had never heard of the syndrome before the diagosis and was actually quite pleased once the GP told me what I had as I had started thinking that it was all in my head! Now that I have read more about it, I am starting to worry. Not a lot of people know about it and I am really glad to have found fellow RSD/ CRPSers, thank you all,

Gerrimondo