Is it safe to say that everyone who developed Erythromelalgia in their 30s/40s and older has secondary Erythromelalgia? That there must be and underlying cause? If so, will curing the underlying cause (if found) end the Erythromelalgia?
I read about the aspirin but how much aspirin? I took 2-3 and never noticed a difference... One thing happened around the same time my feet started to bother me. I had a pain in my right side near the bottom of my rib cage. I had blood tests ruling out the kidneys and liver seemed to be OK. I also had 2 ultrasounds, one for the kidney (the reason for the kidney test was the pain sometimes seem to move to the back area were my right kidney is) and one from my wife's friend, she did a 40 minute ultrasound looking for anything, it came up clean yet I still have this pain. Its not always there, some days its not there, some days for a short time but its been there the same time my feet started to bother me. One thing and only one thing takes this pain away withing seconds and thats one of those waist bands people use to burn fat or to just hold their tummy in, this is not it but its similar - http://i.walmartimages.com/i/p/00/89/99/53/00/0089995300200_500X500.jpg - Anyways this compression seems to take the pain away quickly. Im just curious if this issue has anything to do with my Erythromelalgia being that they both mysteriously started around the same time.
Jimm, I read something similar. I am 33, and my EM appeared randomly last December. My labs show no signs of any autoimmune or inflammatory problems, and, though my platelets are higher now than in December, I’m not near the minimum for ET. My current doctor (a vascular specialist) does not seem to think this is secondary to anything, but maybe the neurologist I’m set to see next month will think differently. As for your abdominal pain, have you been evaluated for a hernia? I had a plaintiff a few years ago that had one and I remember him saying compression relieved his pain.
I also have a dull pain above my right hip. It feels like a cluster of pain points that comes and goes. I feel them most strongly when my feet are firing.
dkel9307 said:
Sounds like you are fine in terms of not responding to aspirin, becaus ethose who do actually respond to low doses.
I would not know about your ribs. Odds would be that it’s related. I went for a long time seeing various specialists, as my EM spread to nether regions and hands, then I got all sorts of other symptoms which, I now know, are Lyme Disease and other co-infections.
My neurologist has said that, if there are vascular issues (which I have) and small fibre neuropathy as a result (ditto), EM can impact any part of the body. There are people on this forum who have it on face, ears, chest, arms etc.
We have a rare and not-well-known condition, so trust yourself and never let anyone say what you are experiencing is not there or just in your head…eventually you will be proven right.
My EM began in my mid 30's after a major surgery. I was then subsequently diagnosed with small fiber neuropathy as well as Behcet's. I have many other issues but these 2 always seem to tie together with the EM. Leave it to me to have 3 rare conditions in addition to all of my others!!
Just quick one guys. Not all secondary EM'ers develop in 30/40's.No hard evidence on this. Just another hypothesis. 50/60's are more prevalent re: late development Some of us have secondary EM but idiopathic still(unknown) - the secondary manifests much later - years later. Its incredible!. EM can precede.
Primary (genetic) can also develop late. In 40's, 50's. Symptoms can have been so mild - virtually unoticable until sudden acute attack. Many of us also develop Raynauds after 2 years. Again - fascinating stuff.
Small nerve fiber is EM by any other name ;)
God bless
mads
Hotma
My EM began in my mid 30's after a major surgery. I was then subsequently diagnosed with small fiber neuropathy as well as Behcet's. I have many other issues but these 2 always seem to tie together with the EM. Leave it to me to have 3 rare conditions in addition to all of my others!!
crazygrandma said:Mine also started after a major surgery. Only I was around 49.i had Raynauds.I have always wondered if my EM was caused by my body rejecting the Bladder Sling after it was implanted I would like to know if anyone else developed their Em after having a device implanted?
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HotmaMy EM began in my mid 30's after a major surgery. I was then subsequently diagnosed with small fiber neuropathy as well as Behcet's. I have many other issues but these 2 always seem to tie together with the EM. Leave it to me to have 3 rare conditions in addition to all of my others!!
There is no hard fast rule I Suppose. This EM Can be quite tricky. Like Mads said you could of hat it to such a small degree that you never even knew you had a problem and it finally Lets loose when you are older. That being said you can also develop a secondary cause at a very young age. I think the best thing you can do is get checked for genetic markers regardless of your age at onset. ( There is a free Test for this going on right now for those that qualify )
If it comes back with no genetic marker be extra vigilant about routine testing for underlying causes. I suppose it is even possible to have a genetic cause and a secondary condition that could cause it for those rare people. Testing for secondary conditions are not 100% and for some tests don't come back positive till having said condition for a few years. I know there are a lot of doctors that like to test for something then write it off forever if it comes back negative but the tests could be wrong and if you don't get retested every once and a while you could be missing a diagnosis that could help it all go away!
I'm not saying be retested every month but I think annual blood tests would be reasonable especially if new symptoms present themselves leading you closer to one particular diagnosis.
Take care,
Alina
OMG!!!! To crazygrandma: My EM began within 1-2 months after a partial hysterectomy & BLADDER SLING placement!! Wholly cow!! Now I'm really wondering if that's the issue?? Would love to hear what happened to you & how soon after surgery did your sx's begin??