YES I LIVE WITH CRPS AND MULTIPLE OTHER HEALTH PROBLEMS NOW SINCE GETTING THE CRPS IN 2000 FOLLOWING A SPINAL SURGERY AND HAVE TRIED EVERYTHING SHORT OF THE INFUSION PUMP FOR TREATMENT OF MY PAIN WITHOUT SUCCESS AND THIS RESEARCH LOOKS VERY INTERESTING TO ME SINCE THEY AT ONE TIME WERE CONSIDERING GIVING ME THE IV TREATMENTS MENTIONED AS I WOULD HAVE HIGH FEVERS OUT OF NO WHERE AND TESTS SHOWED THAT LIVER PRODUCTION WAS LOW ON THIS? HOWEVER IT STOPPED AND NOTHING WAS EVER DONE BUT SURE WOULD BE INTERESTED IN KNOWING IF ANYONE IS NOW DOING THIS TO HELP THOSE WITH CRPS PAIN THAT HAS FAILED ALL OTHER TREATMENTS AS I AM LIVING IN CONSTANT 8 PAIN OR HIGHER DAILY NOW AND REALLY NEED SOMETHING TO BRING PAIN LEVELS DOWN AND LOOKING FOR ANYTHING THAT MIGHT HELP HONESTLY AND IF THERE WAS NO SEEN ADVERSE EFFECTS WHY ISN'T THIS BEING USED MORE IN TREATING CRPS PAIN? IF U HAVE ANY INFORMATION CONCERNING IF THIS IS BEING USED AT ALL ANYWHERE IN THE US IT WOULD BE GREATLY APPRECIATED FOR SURE!
Hi Jeff,
Since this was an initial study, I doubt that it is being used on any kind of regular basis anywhere yet. However, since it appears to be relatively safe, perhaps your doctor would consider trying it for you – especially since they thought about trying it before. You might want to take him a copy of the research abstract in case he hasn't read about the study. Here's a link to the abstract:
http://www.ncbi.nlm.nih.gov/pubmed/20124231
If you do get to try the treatment, I hope you'll let us know how it worked for you. Good luck! – Karen
THANKS SO MUCH FOR THE LINK FOR SURE IT IS GREATLY APPRECIATED AS I HAVE BEEN THROUGH SO MANY TREATMENTS AND BACK IS SHOT OVER THEN YEARS OF THIS CRPS NOW ONLY 1 DISC LEFT NOT RUPTURED SO I SPEND MY DAYS IN BED WHICH ISN'T HELPING MATTERS ONE BIT I KNOW BUT WHAT DO I DO HAVE NO IDEA AS IF UP FOR MORE THAN 5 MINUTES LEGS START GOING NUMB AND SPASAMS AND PAIN GO OVER 10! JUST WOULD LIKE TO LIVE AT LEAST IN SOME KIND OF COMFORT AS LIVING WITH PAIN THIS HIGH EVERYDAY 24/7 ISN'T MUCH OF A LIFE PERIOD? WILL TAKE PAPER WITH ME FOR SURE AS HE WORKS WITH A RESEARCH OR AT LEAST THE PAIN CLINIC IS ASSICIATED WITH A PAIN RESEARCH ORGANIZATION IN WINSTON SALEM, NC SO HE WOULD BE INTERESTED IN READING IT IF HE HASN'T SEEN IT ANYWAY I AM SURE AND HE MIGHT BE WILLING TO GIVE IT A TRY? AGAIN THANKS A LOT FOR SURE! GOD BLESS JEFF
Jeff,
I know the feeling of 24/7 with no relief. I am only 19, and i sit at about an 8 daily, in both legs. I have a spinal cord stimulater and it worked initially. However as you know rsd gets worse. I am looking forward to discussing this IVIG with my doctor to see if he will try it. Its the first time I've felt like other people know how horrible life is with this crap.
Tiffany
Are there any studies being done in the states? Sounds promising. Which is a good thing after 20 yrs of hell. Thanks for the info.
I have said and suspected for YEARS that RSD is in fact an AUTOIMMUNE disorder! I have practically screamed it from every mountain top but it was received by deaf ears-too many systems in the body going against itself for it to not be a full on autoimmune disease! I have even seen patients treated for an unrelated autoimmune disorder experience remission of their RSD due to the treatment of the autoimmune condition. Coincidence I think NOT!
I have wondered since I was diagnosed if there was a correlation between CRPS and autoimmune. I was diagnosed along with CRPS, idopathic small fiber neuropathy, and fibromyalgia (th latter a few months before). I had a very bad case of the flu-for almost a month-the worst of it a week of v/d. I walked better than I have in 2 years. My legs were in less pain, my feet felt almost normal. I continued with the d part of it for another 2 1/2 weeks. Then it all came back...my legs, feet, swelling, pain, redness, splotchy...ect..I mentioned it to 3 Dr's. None could give me an answer-even after I asked if the immune system could have had something to do with it-they all said no. One was a family Dr, one a NP, one mental health specialist in chronic pain. Hm....any response here?
This study showed such promising results Dr Goebel is now undertaking further research to investigate whether or not patients administering this to themselves on a regular basis at home is a possability. I have been accepted onto this 2nd stage of the study. Although most of the trial takes place using sub cutaneous injections at home it still involves several trips to The Walton Centre over a 12 mnth period. Since I live in Highlands Scotland (9hr drive away or short flight) it remains to be seen whether or not I will be well enough to travel. But be reassured there are a lot of very clever people working very hard for our future.
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Hi Karen,
Thanks so much for this post. I've long suspected that my CRPS as well as my other illnesses might be linked to an immune problem. I also find it very interesting because I was given IVIG shots when I was a child because I had severe asthma and recurrent pneumonia.
Mersilkee
Karen,
Thanks so much for the post. Very interesting findings to say the least....