Today, I had a lumbar sympathetic nerve block in my left side. So far, I have not had much, if any pain relief from it. The doctor, a Pain Management Specialist, is "officially" treating me for Chronic Regional Pain Syndrome, not EM, but I think my symptoms more closely match those of EM. I've asked him about EM twice now, once at my consultation, and again today in the hospital, but he says he's "heard of it but doesn't know much about it". He wants me to schedule another block for the right side. I'm not quite sure that makes sense, if this one wasn't effective.
I guess my question to you all is: Have any of you had any relief from a lumbar sympathetic nerve block? If so, did you feel immediate relief, or did it take a while? If you had more than one treatment, did the effectiveness get better after several?
The way I understand it, many people who have these are having pain from cold in their feet and legs, and the block makes the foot warmer, which is what I experienced, but is not what I want, since my feet are hot, not cold. The assistants in the Pain Center at the hospital seemed very surprised at how red, swollen, and hot my feet were when I came in, and after the treatment, my skin temperature had gone up almost 10 degrees. The doctor said that was good, but it obviously didn't improve my pain level.
Thanks for any help you can give me. I am not trying to question the doctor, but I am trying to get an accurate diagnosis, and I hate to keep having treatments if they're not going to help.
Hello coastal spirit.
Unfortunately I can’t be of much help as I’ve not had this procedure. I just wanted you to know is ok and at times important to question your doctor’s opinion regarding your treatment. Yes they are educated in medicine but they are still human and don’t know all there is to know especially when your doctor has already admitted they know nothing about EM. I’m not saying your doctor is, wrong I’m just saying its, important if something doesn’t seem right to get more and more information until you have enough to make an educated decision yourself instead of just following blindly because surly they know best. I have sent your discussion out to the group so hopefully you will get more responses soon.
take care.
The number of people that keep telling me I should keep my feet warm is incredible! I always say the problem is the opposite they are always too hot and they don't believe me until the touch them and are surprised at how hot they feel.
Thank you, Alina, and everyone else for your comments and input. I had no relief yesterday, but I seem to be seeing a little bit today. However, my pain is so variable that I think I'll have to adopt a "wait and see" attitude before committing to having the other side done. I do appreciate your comments on questioning my doctors' opinions ... the doctors probably don't appreciate me doing just this, but I have never met an assistant who didn't advocate it. So question I will.
Alina Delp said:
Hello coastal spirit. Unfortunately I can't be of much help as I've not had this procedure. I just wanted you to know is ok and at times important to question your doctor's opinion regarding your treatment. Yes they are educated in medicine but they are still human and don't know all there is to know especially when your doctor has already admitted they know nothing about EM. I'm not saying your doctor is, wrong I'm just saying its, important if something doesn't seem right to get more and more information until you have enough to make an educated decision yourself instead of just following blindly because surly they know best. I have sent your discussion out to the group so hopefully you will get more responses soon. take care.
Hi, on the follow up why don’t you print up some information on EM for the Pain specialist? If they don’t want to learn more, ask them for a referral to a doctor that is willing to look into it.
I have gotten one round of nerve blocks in my back, I have not even mentioned EM to my pain doctor, as he is working on back pain, i don’t want to complicate it now…
Nerve blocks only last for a short while, it is actually a diagnostic tool to see if the area is causing the pain, the cortisone that they add is supposed to give you longer relief, if the pain is caused by inflammation.
I think EM is caused by the bodies thermostat, it is not related to pinched nerves, but misfiring small nerve fibers, that is why one of the treatments are anti depressants and epeleptic drugs. When your doctor is looking for better circulation, for us that is not a good thing, as there is to much circulation…
Hope you find some relief!
Hello, I had a series of sympathetic nerve blocks, using Guanethedine and another one beginning with 'S' the name of which I just can't recall at the moment. Stellate Ganglion was the name of the other nerve block.These were given to me during a very long period of suffering from the extreme pain of Sudecks AlgoDystrophy which is a sympathetic nerve problem often following the trauma of surgery
These blocks were given to me. to dim down the pain in order that physiotherapy could take place. They were given to me in the region of my collar bone.
The problem was that the physios refused to work on a limb that was "anaesthetised" they waited for a couple of hours or more before they would do their manipulative work.
My treatment, in addition to the nerve blocks, comprised hot wax treatment and months and months of physio.
I am wondering now whether Sudecks and Erythromelalgia are linked in some way?? The only person with knowledge of Sudecks to whom I had access at that time was a Professor of Rheumatology and it was he who got me the nerve blocks, through the pain clinic. The limb, my hand, is now pain free and has about an 80% restoration of function.
I hope this info just might be of interest and use to someone now suffering Erythromalelgia.
You're right. It seems pretty obvious erythromelalgia is autonomic nervous system dysfunction as it relates to vasomotor activity. Primary erythromemlgia is caused by a mutation in the SCN9A gene. In secondary erythromelalgia there is a comorbid condition that triggers it.
Jon_sparky said:
I think EM is caused by the bodies thermostat, it is not related to pinched nerves, but misfiring small nerve fibers, that is why one of the treatments are anti depressants and epeleptic drugs. When your doctor is looking for better circulation, for us that is not a good thing, as there is to much circulation... Hope you find some relief!
I have just looked up the SCN9A gene and found this http://www.jci.org/articles/view/33297. I found it very interesting there is a piece about EM which sounded very sensible. A bit over the top for me to understand completely, but it told me enough to realise that EM is certainly connected to this gene. What is also interesting to me is that my dad always slept with his feet uncovered and I never knew why! Maybe I do now. He didn't have the flares like I have or the pain or he would have told me, but perhaps his was very mild. It's a pity he isn't around to ask more questions, but he passed away in 2004.
Individuals with the SCN9A mutation typically present with symptoms before the age of 25, often much younger than that, and have a disease progression that is more severe than adult onset secondary erythromelalgia. It's an exceptionally rare autosomal dominant disorder. Pfizer had difficulty finding even 15 people in the United States with confirmed familial primary erythromelalgia for its clinical trial on PF-05089771.
I don't know when my dad first started having his feet out of bed, but as long as I can remember. I didn't start with mine until my late 50s so mine doesn't sound like it's due to the SCEN9A mutation so I can only assume that mine is secondary to something else, does that sound correct?
Yes, and if your dad didn't have outward symptoms of erythromelalgia, I think it's very unlikely he carried the SCN9A mutation. In the absence of actual symptoms of erythromelalgia, his desire to keep his feet uncovered was probably personal preference or related to something else.
I think now, though this has never been explained to me,
that Sudecks (which came to me before EM) is possibly the reason why I'm listed as having Connective Tissue Disease, together with peculiar ANF Blood results?
sheltielife said:
I agree, especially as he could never tell me why he wanted his feet out of the bed covers!
I have never been tested, but my symptoms started when I was 29.
CarterDK said:
Individuals with the SCN9A mutation typically present with symptoms before the age of 25, often much younger than that, and have a disease progression that is more severe than adult onset secondary erythromelalgia. It’s an exceptionally rare autosomal dominant disorder. Pfizer had difficulty finding even 15 people in the United States with confirmed familial primary erythromelalgia for its clinical trial on PF-05089771.