While I wait the two weeks till I see Dr. Jorrizzo about the EM - to try to get a real diagnosis, I was interested in whether anyone here had this same presentation:
In August 2012 my toes became kind of numb- I would take my warm bath and I could feel the hot water but it was like it wasn't penetrating deep into my toes - like somehow they didn't feel the warmth all the way through. It was that my toes were numb somehow. All my life because of the ED- with ED's you have poor circulation and it looks like Raynaud's so all the docs would try to say that I had Raynauds. So in 2012, I had terrible diarrhea every night- I couldn't absorb what I was eating and my feet and toes were blue. No one was concerned but when my feet went numb I was also feeling like I was dying and then my one doc sent me to see lots of specialists and everyone thought this was just circulation.
It was not till July 2013- 11 months after my feet went NUMB - that the burning started. The swelling un my toes really didn't start till months after and the getting red. I had burning long before anything turned red.
So I am wondering again if maybe the problem is what ONE doc said - that my nerves got demyelinated when I was eating through my muscle mass and I ate through my myelin sheaths on my nerves.
I guess Dr. J will have some ideas on 6/6 but just wondered if this resonated with anyone here
I wouldn't get numbness per say but I would have freezing fingers and toes 24/7 for several months before the burning started. I was sure I was going to have to wear gloves and socks with my swimsuit as summer was quickly approaching!
I now get full numbness in my fingers ,arms and my feet from the arch up through my toes. This didn't start however till after the burning. It doesn't mean it's not the same thing. It could just be that we are not on the same schedule.
It makes sense what your doctor says about a possible cause for your EM. That isn't how mine started but that doesn't mean I don't have some sort of underlying myelin sheath damage caused by something else. I just don't know.
I can however offer up a few tips with dealing with numb fingers/toes and burning hands/feet.
Cut the tips off a pair of gloves so you can just put the fingers over your numb fingers not covering anything else you don't have to. This way you can try to prevent burning elsewhere. Roll socks over double or triple your toes. This way they only cover your numb toes sparing the added warmth on the rest of your foot hopefully preventing flaring in your feet!
Thank you so much for this advice! I hope Dr. Jorrizzo will be able to say if he thinks I really have EM and also give me some kind of treatment plan. But your kind advice is a great idea! I going to start cutting gloves and socks now!
J
Alina Delp said:
Hi Jordy.
I wouldn't get numbness per say but I would have freezing fingers and toes 24/7 for several months before the burning started. I was sure I was going to have to wear gloves and socks with my swimsuit as summer was quickly approaching!
I now get full numbness in my fingers ,arms and my feet from the arch up through my toes. This didn't start however till after the burning. It doesn't mean it's not the same thing. It could just be that we are not on the same schedule.
It makes sense what your doctor says about a possible cause for your EM. That isn't how mine started but that doesn't mean I don't have some sort of underlying myelin sheath damage caused by something else. I just don't know.
I can however offer up a few tips with dealing with numb fingers/toes and burning hands/feet.
Cut the tips off a pair of gloves so you can just put the fingers over your numb fingers not covering anything else you don't have to. This way you can try to prevent burning elsewhere. Roll socks over double or triple your toes. This way they only cover your numb toes sparing the added warmth on the rest of your foot hopefully preventing flaring in your feet!
Just so you known Jordy. You don't have to cut the socks just roll them over the toes you can roll them back again so there are 3 layers just over the toes and not on the rest of your feet. This way it even stays on with limited activity such as shuffling your way to the bathroom or kitchen. I know it is hard to find anything that helps with the numbness because it freezes from the inside out but it is better than nothing! What actually helps greatly with fingers is sucking on them. I know... gross! Just wash your hands first and you are good to go. It not only provides warmth just to the frozen part and not the rest of the hand in turn causing burning. It also helps with circulation like magic! It takes about 2-5 minutes and your finger is good as new! Well at least not numb anymore.
I have numbness in my fingers and toes. I have also had redness, burning pain and swelling. The cause of my erythromelalgia is small fiber neuropathy. You may want to look into this. Good luck!
Hi Jordy,
I have permanent numbness in the soles of my feet and big toes. It feels as if I have slippers on, a layer of something between my feet and the floor. Very odd. I have had Raynauds since I was in my early 20s, now in early 70s, but this numbness, which is not the white numbness of a Raynauds attack, only began when the EM started four years ago.
The deep freeze which invades my feet and hands is EM related too I believe and I find it almost impossible to relieve without going into a flare. Gloves on, gloves off, socks on, socks off all day long; it’s second nature now and I try not to think about it.
Take care
Nel
Hello, my issue started with the tip of my big toe in the summer of 2008, it felt like something was in my sneaker like my sock was bunched up. I actually bought new sneakers thinking it must be something on the inside of my sneaker but it was the tip of my big toe feeling numb, not the sneaker even though it could feel touch it felt numb. I cant remember how it all went after that but it was a few months later when it effected both feet and when I say feet its mostly in all the toes and the ball of my foot, the other 1/2 of my foot to the heal seems to be for the most part unaffected. When I get nasty flareups I walk on my heels.
Yep. My toes were always icy cold (although norm in color) for years until one winter night, they got painfully cold, and as they finally warmed up, they developed chilblains. Then, over the next few days, the entirety of my toes became red and hot and stayed that way for a couple of weeks. After that, they settled into the triggered flaring pattern we all know.
I used to get tingling and numbness in my toes too, but for the life of me I cannot remember now if that started before or after the EM (it was the same year, I know that much).
I have numbness in my fingers and toes. I have also had redness, burning pain and swelling. The cause of my erythromelalgia is small fiber neuropathy. You may want to look into this. Good luck!
A specialized skin biopsy and an autonomic function test was used for diagnosis. Here is a good article about it. Good luck. Let me know how you make out! http://m.ccjm.org/content/76/5/297.full
Hi, long time since I commented. Like Jen, I am diagnosed with small fiber neuropathy (SFN). I began with numbness in the two middle toes of each foot. Over a year, it moved up my legs to my butt. That was 10 years ago and I remain numb, both entire legs. A skin biopsy shows my small fiber nerves are disintegrating. The EM didn't show up until I had been numb 7 years. I have come to believe EM is not a "disease" of it's own, but a set of effects due to other causes. When I say EM, I mean the part of my problem manifesting as "hot, red, swollen, painful feet".
Small fiber neuropathy usually involves both the sensory small fibers and the autonomic nervous system C-fibers. All autonomic nerve fibers are small fibers. Jordy mentions having diarrhea. The digestive system is totally controlled by the autonomic nervous system, too, and digestive problems can be part of small fiber neuropathy. Also sweat problems, problems with blood pressure dropping when you stand up quickly (feeling faint).
Only a few hospitals in the US have the equipment to diagnose SFN, at this time. I know some are Mayo in Minnesota, Vanderbilt in Nashville, Johns Hopkins in Baltimore, Cleveland Clinic in Ohio. I don't know why this is, because it seems to me the equipment isn't very big or expensive. I first went to the Univ. of New Mexico hospital (where I live), and they never even thought of my autonomic nervous system. It was like they forgot that existed. After Mayo diagnosed me, I wrote UNM and suggested they think more creatively in diagnosing folks.
SFN is often the underlying condition to EM. Even for folks with the genetic mutation form, it's the sensory motor and autonomic systems that show the mutation.
Jane - I am lucky enough to live in boston so mgh is where I was diagnosed. I have many autonomic symptoms, too. Dry eyes, stomach issues, urinary issues ( I’ll spare you). My skin biopsy shows a decreased nerve count and I have decreased sweating on my autonomic function test. My symptoms have been going on since 12 and I am 37. (Just diagnosed at 34). Finally got answers. My genetic testing was negative.
Does any one have intermittent Autonomic neuropathy symptons? I haven’t been diagnosed with small fiber neuropathy yet because my symptoms and test results keep changing! I think I will start a full post about this but I am on my phone and typing too much is difficult. Just reading about the symptoms if it I am convinced this is my problem but how intermittent ??? That’s the question. Doctors say it can’t happen but then again they told me my EM couldn’t happen too!
TThank you,
Alina
I imagine Small Fiber Neuropathy is not intermittent, since it involves degeneration of small nerve fibers. But the EM symptoms are for sure intermittent. Numbness would not be intermittent, I think (I'm no doctor!). Try to0 find a doctor that specializes in the autonomic nervous system. Which includes effecting vascular constriction and dilation, by the way.
I went online for Drs. in Albuquerque specializing in autonomic system. I haven't seen any of them because I ended up going to Mayo, where I knew they had the testing capabilities. But in the future I'll go to a New Mexico specialist. Mayo is way too far away. Plus, like everything most of us has, they can't "cure" it.
Before I had EM symptoms first I had digestive issues , nausea , diarrhea ,constipation and insane stomach cramps. My arms and feet started going numb along with a host of other issues. I had strange tastes and smells that weren't there along with areas on my body that had water droplet sensations for a few months at a time. It felt as if little spots in my body were wet and I kept trying to wipe them off but nothing was ever there.They tested my arms while they were symptomatic via nerve conduction study and they said I had carpal tunnel in both of my arms and all I could do was sleep with braces on my wrists. I am not sure why they didn't test my feet at the time.
This neurologist wasn't interested in finding out what my other symptoms were about just to wear wrist braces so I found a new one. The next one did the autonomic tests and that came back no neuropathy in my arms ( I wasn't symptomatic at the time). It showed possible small fiber neuropathy in my feet but not enough for a diagnosis. My sweat test came back that I wasn't sweating which to me explained my EM symptoms that were present at the time. My tilt table test came back normal . At the time of testing my blood pressure was fine but for the few months before seeing her I was having crazy unexplained high blood pressure but only when standing not when laying down or sitting.I know opposite of typical blood pressure issues with autonomic dysfunction. when this was happening my other doctor sent me straight to the ER because it was so dangerously high. He couldn't give me meds for it because when I sit down it would get dangerously low. After a few months it just returned to normal. My normal is very good too. 118/68 is typical.
That neurologist didn't know what to make of the test results because they were inconclusive she said. She then pretty much dismissed me and said I was crazy because neuropathy can't be intermittent and my last test showing neuropathy in my arms must have been wrong. Totally dismissing the fact I wasn't sweating and it showed signs of small fiber neuropathy in my feet. I think I was just too complicated for her.
I have had the eat the radioactive eggs test while they watch them digest and that came back slow digestion and they said that is caused by the autonomic system but this was my digestive specialist that ran the test not a neurologist.
I don't know what to say other than it does happen to me weather it's possible or not. Numbness , digestive issues ,strange tastes and smells along with crawling and water droplet sensations all come and go! usually lasting a few months at a time when they present. I have a theory that no one will listen to. Inflammation. I have had intermittent elevated SED rate tests. sometimes it is quite high and other times normal. They think it could be autoimmune wouldn't you know it all testing for specific autoimmune conditions come back normal. I think when I have inflammation in my body it could be pressing on my nerves causing symptoms. Just a theory but I have no answers as of yet. Just strange if you ask me!
Alina i have very similar symptoms. My autonomic function test is only pos for decreased sweating but not the other categories. My skin biopsy was the definitive diagnosis for me! My numbness comes and goes, too. And I have a slightly elevated esr. That is why they are trying the ivig now.
I wonder why my neurologist didn’t do a skin biopsy. I must find a new one and request it.she just gave me the impression I was too complicated or crazy. When things aren’t constant they have problems believing you even with test results I’m my case showing small fiber autonomic problems! I think it just comes down to finding the right doctor.
Have you had your ivig treatment yet? Is it helping? Thank you
Alina. It took me years to find someone that would investigate my symptoms. Probably b/c it was so rare they just didn’t know. The skin biopsy has to be done somewhere where they can send the sample to be compared to normative data. Your doctor may not have that capability and that is why it was notsuggested. I just finished my second round of ivig and I notice an improvement. I have one more round in July and then I see neuro in aug. I am wondering if my exam improved, too.
I am so glad it is helping you !
I will ask my doctor if she thinks the infusions may be of help to me too.
Thank you for all of your help.
Take care,
Alina
According to I believe the Mayo Clinic Studies 88% of EM patients have small fiber neuropathy. There are a few different methods of testing. The Mayo Clinic uses a sweat test. I also had it done locally via skin biopsy by a specially trained dermatologist. Then the sample is sent to a lab in NYC. I believe they are the only lab in the country to evaluate the samples. Small fiber neuropathy is also associated with Fibromyalgia. One of the 10 richest men in the US has come down with SFN. As a result grant money will soon be going into the study of SFN which has never been well researched. I personally have SFN, EM and Fibromyalgia. In addition to all the symptoms I have read on this site, I also have Spontaneous pain. It like a phantom pain that suddenly comes and goes.
