One of our members FIXME has kindly shared his experience of radiofrequency ablation (RFA) . This is a topic we have never really discussed, so one of great interest . We are so pleased that Fixme has found something that 'works for him' , and thank him for his generous offer to answer any questions.His experience is pasted below.
'I have erythromelalgia and fibromyalgia with small fiber neuropathy's. I was experiencing extreme pain in the lumbar and cervical region along with major muscle spasms. These pains were frequently associated with flareups in my feet And at some point I started to get epidurals in my lower back and neck. The epidurals very frequently effective if the injection hit the proper nerve bundle. But the wonderful effects were fairly short-lived. Usually relief was only for a few weeks at best a couple months. With radiofrequency ablation the use of needles with electrical current are used to disrupt the functioning of the ends of the nerves which provided terrific pain relief for those areas. They say the treatment lasts for nine months to a year and a half. I found that to be true for me. Although the treatments did not directly affect the Erythromelalgia burning in my feet and hands and face it did provide me terrific relief. The relief was most dramatic and my neck and lower spine but it helped generally for all the other pains I was going through when there was a reduction of stress. Because I was doing with much less pain in general. I am no longer bedridden as I frequently was before I started the treatments. I am at a point where I no longer get radiofrequency ablation because it has basically become unnecessary..you can get the treatment under general or local anesthesia. I had it done under local and I have to say it was very painful but that only lasted for a few seconds. Please feel free to ask me any questions you might have about the procedure'.
Has anyone else had or been offered radiofrequency ablation (neurotomy/lesioning) ?
What are your thoughts on radiofrequency ablation in the management of EM pain ?
Overview and video links.
What about acupuncture? Could that help?
The procedures where done by my pain management doctors at UCSD. They were done for spinal pain and also muscle pain and spasms in the neck. It was hard to tell if the pains were Fibro or EM related. The treatments were very effective for those area’s and the calming of nerves, which also made my EM flare ups more tolerable. If you’re having any problems with pains and nerves from your spinal column I would certainly consider it I had started with spinal epidurals but radiofrequency ablation was much better. They start with a temporary nerve block. If that is effective they will schedule the procedure a couple of weeks later. If the issues are bilateral they will do each area on separate days. Although I think most of my pain was Fibro related, I also had a burning pain in my buttock which I have always associated with my EM, and it also benefited from the treatment. I started out with what I would say is a classic case of EM in my feet, that eventually spread to my hands, face, buttock and genitals.The small fiber neuropathy and autonomic dysfuntion is everywhere. I used to tell my doctors that I could be the poster boy for EM. Interestingly my fare ups have changed. I have what feels like a fare up in my feet, but they look normal and are cool. The next time they flare they are very red but not burning, etc. So now the perception of the flare ups and the actual visual condition do not line up. I have tried a lot of the drugs that EM patients use, and have found two things that have been terrific for me. That is morphine, and prednisone which I take every other day. Without those drugs I would be spending most of my time at home and probably in bed. I had to beg my doctor to view me as a patient with an autoimmune disease, and treat it along the lines of RA. He eventually went along with my thinking, and it been life changing. My diagnosis was confirmed by the Mayo Clinic and Dr. Jay Cohen. Tthe Xenon study showed that I had a gene mutation in the sodium channel NAV 1.7. lt was a mutation that originally was thought to be causal for EM. They have now changed their minds and (Dr. Steven Waxman – Yale) say it will take many more years of study to know it’s effect but in my view certainly suggests a clue to a dysfunction in the sodium channel.
Hi Mads -
Some good information regarding Spine Pain - which may or may not be helpful for the feet is yet to be determined - But for me personally I will research it and discuss it with my doctor and see what can be done for my lower lumbar pain L1 to L5 of my spine causes me a tremendous amount of pain on a dailly basis and would be so good to be rid of it and also see if there are any benefits for the feet as well - a bit late this year to get anything done so I will look into it for next year ...
This is really interesting - please keep me in the loop!
Thanks for sharing