I live in Texas and it's so hot here the catfish carry water bottles. Here's my experience with doctor and EM. Hope it helps you. After a small fiber neuropathy diagnosis from my neurologist I suspected I had EM and took a short scientific article about EM to my GP. I gave it to the nurse for him to read while I was in the waiting room. He read the article and was willing to try to find a medication that would work for me. The first one we tried was Savella. Took the foot pain away but other side effects were intolerable. The next med he tried was Carbamazapine. Helped some, but not enough. He added Cymbalta and jackpot. Pain gone, but appetite too big, so he reduced the amount of Cymbalta and I'm pain free with a normal appetite. Good luck and God bless. I understand what you are going thru.
Here is the link to the article I took to my doctor. I think I also highlighted the symptoms that were the same as mine and the possible treatments.
EM research seems so new that it's easier to share info with an understanding and compassionate doctor than it is to find a doctor familiar with EM. Scientific research is moving fast but a good doctor is equally important. Hope this helps!
I just posted a reply to you but I need to tell you I cut a pasted the relevant parts of the article I took to my doctor to minimize the time it would take for him to read it.
I hope you are right Blue. May your summer be cool and pain free!
blue said:
Hi ,
I,m not sure about location/temperatures. I used to think winter was the worst for me but I just had a very uncomfortable winter, EM wise, then I traveled north about 10 hours drive(just got back), about 2 hours drive
south from where tizzy lives. It’s spring but quite warm up there (not hot yet) but apart from one night where I was too hot (hubby snuggled under feather down quilt) I actually had no real burning going on at all. I was red at times and often felt too hot, but no burning… There was a fantastic cooling sea breeze blowing night and dayalthough on the night I felt too hot the v breeze had dropped off somewhat, and as soon as I got out of bed that too hot feeling went away. I was bemused that the burning pain of erythromelalgia had all but diminished. But I was dealing with strong POTS symptoms, instead. I always find it hard to manage POTS when
I’m away. I was dealing with a lot of stress ( one member of my family who was holidaying with us is very illand frankly I’m very frightened about this). I got only about 2 hours sleep at night, most nights because of anxiety and excess adrenalin. Breing in tha
t state is going to make POTS worse, but usually makes my erythromelalgia worse too. It just didn’t happen. I did wonder if I’ve seen the last of EM (DOUBT IT AFTER 12 YEARS, But who knows? Fingers crossed.). We got back about 20 hours ago and EM has not been painful, although I am still flushing red in different parts of my body. Just no burning.
I’ll keep everyone updated. Erythromelagia was always worse in summer than winter for me but this winter I continued to battle with it. Maybe summer isn’t going to be so bad after all, fingers crossed.
It is day 12 (I'm counting) since having strong EM burning. Still feeling too hot a lot of the time (with ocasional bouts of feeling too cold. Extremities and nose and face are often uncomfortably cold and I am getting numbness inthose areas, plus numbness in other areas of my body - as hysterical as it sounds I noticed, while in the shower yesterday, that my butt cheeks were numb??? They are usual burn when I sit and am trying to think if I have had any burning in that area in the past 12 days but if I did it wasn't enough to be a problem- we do learn to tolerate and unconsciously deal with some amount of burning, I think, because of its regularity). But no uncomfortable burning.
My POTS (postural othostatic tachycardia syndrome, a form of dyfunctonal autonomic nernous system) symptoms have increased again. Finding it hard to stand and walk becsuse of weakness and tachycardia. I have experienced the phenomenon of only being able to feel one sort of pain in the past, so perhaps that is what is happening now. I would take my Pots symptoms over EM burning any day of the week. But I should be careful saying that as I am not fully incapacitated by POTS as some Pots suferers that I know on the pots forum I visit. I am up there in terms of severity but not suffering to the extremes that some other people do. Although I am very aware that like EM, there is no predicting how bad, or not t, it can evolve into.
Either way, I'm not going to look a gift horse in the face right at his monent, as they say. And just accept, gratefully, that at this moment I have no burning. (Knock on wood and 'don't let the gods hear). It has been a reminder to me that the worst stuff I experience can ease off. Guess I just enjoy it while it lasts.
The burning is back as of this morning. But I am still encouraged by the fact it was pretty much gone for 12 days. I do wish I could zero in on the cause but cant see that anything is different. The itching that I get sometimes, before the burning starts up, is back again too.
Curi
ouser and curiouser. But what isn't 'curious' sbout this stuff?
How are you going, dkel? I know you have had a tough time of it for some time now.
Good news about the lyme treatment, at least. The rest sounds pretty challenging -to say the least.
My diagnoses: Postural Orthostatic Tachycardia Syndrome (and all the weird symptoms th
at come with autonomic dysfunction) EM, chronic daily migraine - which now includes almost constant tiinitus- and the growing allergies snd chemical uintolerances are wearying. I do go into hospital next week so I can be allergy tested over 5-7 days to see if it was truly aspirin that caused one of my anaphylaxis episodes (hoping it wasn't the aspirin because it used to help me more than panadol has) but I am anxious about it. I can see it's a reasonable choice to make but my experiences in hospital have never been very good apart fron about 7 years ago when I was hospitalized for a few weeks for migraine and POTS - during which time the docs worked out a a passibly better way of managing migraine, and ran a lot if tests which told them what I dont have - lol).
I am anious that I will go into anaphlactic shock. Plus I am also anxious that I will be not on the spot - at home - if one of my adult children - who is sick - needs my support. But then I try to think that there I never a good time for doing this sort of stuff. I won'tbe surprised if I put the hospital admittance off - at the m8ment it is omly the return of the burning that is keeping me encouraged enough to go.
I keep telling mysel that the almost total absence of burning for 12 days may be the start of something better. But I did feel pretty diwn when it returned.