Hi Everyone - I have been newly diagnosed with this awful condition and I'm curious as to what everyone thinks may have brought on this condition in them? Was there is a specific thing you were doing? An infection? I guess I'm still in denial and hoping this condition will go away as quickly as it seems to have come on. Up until 4 months ago, I was a very active 47 year old woman. Now, I find it difficult to get through the day. Also, the burning sensation travels all over my body - and my hands and feet are ironically the only parts of my body that DON'T burn and turn red. The sensation is chronic - it never goes away. Is anyone else experiencing it like this? Thank you!
You should definitely be checked for other illnesses. This doesn't sound like classic EM, and it could be something else. I am still in the process of being diagnosed myself, but my issues did not appear suddenly, but I have had Raynaud's for a very long time and the two are linked so that is probably my issue. have you ever had any other circulatory issues? Heart problems? Diabetes?
Hi Aftertheteacups - thanks so much for your reply. I appreciate it. I have been tested for SO many other illnesses...diabetes, lupus, MS to name a few. All blood tests/ultrasounds/MRI's come back normal (with the exception of a low Vitamin D level). I do have pernicious anemia, which I was diagnosed with at age 24. I get monthly B12 shots and my level maintains around 400-500. My physician does not think this condition is related. I do get mild Raynaud's symptoms - have for years, but my fingers and toes don't turn blue, only white. As for heart issues, I have a mild case of Mitral valve prolapse - again, reviewed by a cardiologist. I am at a loss as to what is going on. I have read that there can be cases of either primary or secondary EM, with primary often times responding to aspirin treatment. My symptoms were not relieved by aspirin, not are they relieved by amitryptiline, etc. Any additional thoughts would be very much appreciated! Again, the burning sensation travels throughout my body and is at random spots. My face and chest are at least always a mild pink to a deep red, especially when I drink alcohol. No idea.
aftertheteacups said:
You should definitely be checked for other illnesses. This doesn't sound like classic EM, and it could be something else. I am still in the process of being diagnosed myself, but my issues did not appear suddenly, but I have had Raynaud's for a very long time and the two are linked so that is probably my issue. have you ever had any other circulatory issues? Heart problems? Diabetes?
what about borreliosis? dunno y but it came to my mind the first moment i read your post. I have EM in my face and ears, i think EM can travel throughout the whole body, but its very unusual that your feet/hands are okay.
Hi Liz - thanks for your reply. I'm sorry to hear you are dealing with EM as well. I have been tested (a few times) for Lyme disease and it has been ruled out. This is so frustrating! I also forgot to mention that I have mild hypertension with odd episodes of blood pressure spikes. Pheocromocytoma has also been ruled out. Honestly, I feel like I am losing my mind. How did EM start for you and how were you eventually diagnosed? Take care.
Hi Laurie,
Wow, it sounds like you have had a lot of tests. I'm sorry you are going through this. I did think of something, but burning throughout the whole body is not usually associated with it, but have you looked into Rosacea? I have it, and my chest and face will get very pink at times, especially when I drink which is what made me think of it. The kind I have mostly makes it look like I have a rash on my face 100% of the time, but there are different types, and you can have several different types at once. And I have heard of it causing bad pain for people in the affected areas (not usually throughout the whole body though). http://www.rosacea.org/patients/faces.php
Hi Aftertheteacups...thanks again for the information. They have ruled out Rosacea as well. I hope you are doing OK too!
Hi Laurie, no problem, sorry that I wasn't much help! =P
Wow! I am actually surprised that EM is what your doctor is labeling it. I may be mistaken, but it is my understanding that one of the key characteristics of EM is that the vasoconstriction and vasodilation, with the burning, takes place in the extremities. I have had burning reach as far up as my knees, but it always starts somewhere in my feet when that happens. As for what may have caused mine... I had initially thought mercury toxicity was the culprit. I had my amalgam fillings taken out (the safe way, by a merc-free dentist) and I felt immensely better within 2 days. The burning, however has continued, and now my youngest child (she's 7) obviously has EM as well. Curiously, hers did not start until a little while (maybe 2-3 weeks) after she had an amalgam filling, which has been in for over 2 years now, break off in her mouth and she had swallowed it. So, I have not dismissed the Mercury as a cause, but I have to consider the possibility that I am the first in my family the have this and have handed it down. The only way I can still consider the mercury as a possible cause of both mine and my daughter's EM is if I consider that maybe the dentist - who did both her and my fillings - messed up or mixed the amalgam compound in a way that resulted in a higher concentration of mercury than what is supposed to be in it. -----By the way, mercury fillings are, typically, pretty much half mercury and the rest is a composite of other metals [like silver and aluminum]. There has never been a definite SAFE amount of mercury determined by the FDA, in people or in animals. The only studies that I have found, that yielded conclusive evidence, all pointed to mercury as something that should NEVER be allowed to be put in anyone's body. When a nurse would drop a thermometer (back before everything went digital) what did they do next? They got far away from it, got people away from it, and if they couldn't move the people in nearby rooms they'd close those peoples' doors to prevent them from breathing the vapors. There is even a video that references some of these studies, and is very enlightening. It is called "smoking teeth". (I believe it is on youtube) But you need to decide what YOU think. I spent months reading studies and arguments that centered on the safety of mercury (as fillings, vaccine preservatives, etc.) and I feel I have a good basis for my stand.
I hope you find the answers you seek, as well as those you simply need to find. I also hope I didn't come off as a loon. LOL! I am only 34 and have been dealing with this for a couple years now. I hope I can bring comfort (at least emotional comfort, as the physical kind is elusive) to others who are suffering.
God bless,
CC
Hi Laurie,
I was running regularly, and faster than usual, when the erythromelagia in my feet started. But I also have an underlying neuropathy condition which I suspect is connected to the problem. Now I rely on swimming as my form of exercise.
Dave
Hi Laurie,
You mentioned that you had tried amitriptyline, but that did not work. Have you tried anything else like gabapentin, Lyrica, Cymbalta, etc.?
Dave
My EM started 2 weeks ago in ernest. Last spring after being outside with no gloves in 40 degree weather, my hands swelled, turned red and itched intensely. Easy fix was to wear gloves and not be outside long. Then this fall, if I wore socks with tight elastic, I would itch intensely and have to stop and take off my socks. My feet started itching and turning red 2 weeks ago. I haven't slept through the night in 2 weeks either. I see a rheumatologist tomorrow. I have other autoimmune disorders: Grave's disease and colitis. I really hope the Dr can come across the right meds for me too.
Hi Dave:
I haven't tried other medications, yet....Honestly, I think I am still in denial, convinced this must be something else. I can't write too much tonight...just finished moving and my hands hurt A LOT. Will try to be back in touch soon. Thank you!
Dave said:
Hi Laurie,
You mentioned that you had tried amitriptyline, but that did not work. Have you tried anything else like gabapentin, Lyrica, Cymbalta, etc.?
Dave
Hi Laurie,
Can I recommend the software Dragon Naturally Speaking? It is a voice recognition software that allows you to speak instead of type.
By the way what is the name of your physician? Is he/she any good?
Dave
laurie1515 said:
Hi Dave:
I haven't tried other medications, yet....Honestly, I think I am still in denial, convinced this must be something else. I can't write too much tonight...just finished moving and my hands hurt A LOT. Will try to be back in touch soon. Thank you!
Dave said:
I haven't been confirmed with a diagnosis of EM but my hands and feet have changed. Mostly my feet - at night my heel starts to tingle/sting, then it seems to spreads to the rest of my foot and it stings, turns red, and itches for 1 to 3 hrs before it settles down enough that I can fall asleep. I started amitriptyline but it knocks me out - I'm a "light-weight" with meds. I have been to a rheumatologist & dermatologist. I am scheduled to go to a neurologist soon.
My hands swell, turn red, and itch like crazy after they have been cold and are rewarming. I thought it was cold urticaria and I'm just careful to wear gloves. But now my hands feel irritated at times but only had the redness & itching once inside. I have atypical symptoms, so more doctor visits.
MsKim
I have been to a neurologist who has treated people with EM and he confirmed my diagnosis. I am on amitriptyline now. I took photos and online articles about EM to all of my doctor appointments and photos of my flares. I believe my case is mild, but does come at night. After a week on meds, I am sleeping better and the flares don't last as long. I hope this helps.
MsKim said:
My EM started 2 weeks ago in ernest. Last spring after being outside with no gloves in 40 degree weather, my hands swelled, turned red and itched intensely. Easy fix was to wear gloves and not be outside long. Then this fall, if I wore socks with tight elastic, I would itch intensely and have to stop and take off my socks. My feet started itching and turning red 2 weeks ago. I haven't slept through the night in 2 weeks either. I see a rheumatologist tomorrow. I have other autoimmune disorders: Grave's disease and colitis. I really hope the Dr can come across the right meds for me too.
mads said:
Hi laurie,
im new too and experiencing same symptoms as you. im frightened. Neurologists dont seem to know about EM. ive been so bad for 3 months now. like u chronic... only the redness comes and goes... night is the worse. I even took photos to show dr as doesnt believe me im sure. my thighs just balloon and lobster red.... plus legs, feet, hands. Its all the other symptoms that similar to MS- the burning, numbness, pins/needles, i get cramps, muscle aches, weakness... i feel like i have had the worst flu ever and no energy... hurts to walk... if i can walk as my soles feet on fire...... im 45 and like disabled overnight.I just have to be cold... i cant stand heat, clothing... its dreadful. Cant stop crying. Im thinking stress may have precipitated mine... i dont know. How did you manage to get diagnosed so quickly......? At least this site makes me realised im not alone.... thats comforting. I just want a diagnosis.... not knowing is the worst part. God bless you. x
PS: does anyone get internal tremors... invisible to public eye. I get them random .like being on a vibrating machine. Oh and my bloods are all ok, not RA, not lupus, no infection, MRI spine ok but now want to do brain just incase...Its not MS even i know that......I feel so down. My legs are so tight and stiff with the swelling... ive even developed phlebitis in both lower leg!..
Yes, I get the internal tremors that are invisible. Many of the same symptoms you have.
1 Like
Hi Fixme, You are the only person ive found who also gets the tremors. Would you like to compare notes as you say you have many symptoms i have. Im so frightened as i seem to have a chronic onset of whatever it is - EM , polyneuropathy, fibro.... MS... i dont know anymore... i randomly have all symptoms- they change daily. Havent been able to use my hands for 2 days then today bang... they seem better. Cant get my head round this. Neuro is really dragging things out. Welcome to group. Ive found it such a massive source of strength and comfort
God bless x
Fixme said:
mads said:Hi laurie,
im new too and experiencing same symptoms as you. im frightened. Neurologists dont seem to know about EM. ive been so bad for 3 months now. like u chronic... only the redness comes and goes... night is the worse. I even took photos to show dr as doesnt believe me im sure. my thighs just balloon and lobster red.... plus legs, feet, hands. Its all the other symptoms that similar to MS- the burning, numbness, pins/needles, i get cramps, muscle aches, weakness... i feel like i have had the worst flu ever and no energy... hurts to walk... if i can walk as my soles feet on fire...... im 45 and like disabled overnight.I just have to be cold... i cant stand heat, clothing... its dreadful. Cant stop crying. Im thinking stress may have precipitated mine... i dont know. How did you manage to get diagnosed so quickly......? At least this site makes me realised im not alone.... thats comforting. I just want a diagnosis.... not knowing is the worst part. God bless you. x
PS: does anyone get internal tremors... invisible to public eye. I get them random .like being on a vibrating machine. Oh and my bloods are all ok, not RA, not lupus, no infection, MRI spine ok but now want to do brain just incase...Its not MS even i know that......I feel so down. My legs are so tight and stiff with the swelling... ive even developed phlebitis in both lower leg!..
Yes, I get the internal tremors that are invisible. Many of the same symptoms you have.
1 Like
mads said:
Hi Fixme, You are the only person ive found who also gets the tremors. Would you like to compare notes as you say you have many symptoms i have. Im so frightened as i seem to have a chronic onset of whatever it is - EM , polyneuropathy, fibro.... MS... i dont know anymore... i randomly have all symptoms- they change daily. Havent been able to use my hands for 2 days then today bang... they seem better. Cant get my head round this. Neuro is really dragging things out. Welcome to group. Ive found it such a massive source of strength and comfort
God bless x
Fixme said:
mads said:Hi laurie,
im new too and experiencing same symptoms as you. im frightened. Neurologists dont seem to know about EM. ive been so bad for 3 months now. like u chronic... only the redness comes and goes... night is the worse. I even took photos to show dr as doesnt believe me im sure. my thighs just balloon and lobster red.... plus legs, feet, hands. Its all the other symptoms that similar to MS- the burning, numbness, pins/needles, i get cramps, muscle aches, weakness... i feel like i have had the worst flu ever and no energy... hurts to walk... if i can walk as my soles feet on fire...... im 45 and like disabled overnight.I just have to be cold... i cant stand heat, clothing... its dreadful. Cant stop crying. Im thinking stress may have precipitated mine... i dont know. How did you manage to get diagnosed so quickly......? At least this site makes me realised im not alone.... thats comforting. I just want a diagnosis.... not knowing is the worst part. God bless you. x
PS: does anyone get internal tremors... invisible to public eye. I get them random .like being on a vibrating machine. Oh and my bloods are all ok, not RA, not lupus, no infection, MRI spine ok but now want to do brain just incase...Its not MS even i know that......I feel so down. My legs are so tight and stiff with the swelling... ive even developed phlebitis in both lower leg!..
Yes, I get the internal tremors that are invisible. Many of the same symptoms you have.
Hi Laurie. Self diagnosed at this point for EM. I have been diagnosed with small fiber neuropathy (via skin biopsy). And Monoclonal Gammopathy with uncertain significance. Tried Gab, then Lyrica which worked well until it almost sent me to the ER. Now on Topiramate helping a lot (and losing weight bonus) but also to many side effects. I have seen two internist, two neurologist, GI, Hand-wrist specialist, RA doc,urologist, psychiatrist, hematologist –oncologist, physical therapist, pain management doctors, multi back surgeons, sleep specialist, neuro surgeon, eye specialist. I’m sure I left someone out with all the drugs I’ve been on who can remember. I’ve started to feel better for no apparent reason.
Why so many doctors in 4 ½ months. Here are my symptoms, most started Nov 15. In no particular order.
Lip numb (drug side effect), abnormal color of lip and gums(drug side effect) Numbness in upper chest skin (drug s/e), skin pain and weakness in legs shaking of muscles, sudden muscle weakness, silent migraine, aura migraine, msg reaction, sleep paralysis and narcolepsy, lump on chest wall, SKIN RASHS all over body . Itching of skin. Mild patchy and linear erythema in the distal body of the stomach and duodenum Diagnosed with hives unknown cause biopsied blood pooling in hands – feet burning in hands, pin and needles in hands and feet, skin burning, headache, low body temperature (now gone), hyper skin sensitivity ,urethra burning on and off ,bladder urination issues, lump in left testicle - Multiple cystic structures found, dizziness, sinus issues, loud pustule tinnitus, Rage issues, anxiety issues, muscle spasms from neck to bicep cramp in calf cloudy thinking - mostly drugs, shivering, allergy reactions, sick to my stomach, acidic throwing up, etc. Psoriasis - eczema, heart palpitations, heart irregular beats, nerve pain in muscles, sleeplessnes,s IMG monoclonal protein with lambda light specificity, Kappa Free Light Chains Quant abnormal HIGH
hallucinations on gaba and visual issues not on gab brief burning in butt going to testicles, Visual distortions started with feet burning, hot skin burning hands pins and needles Allergy reactions to foods turning red and itching nervousness in hands and muscles low blood pressure low heart beat diagnosed with small fiber neuropathy severe nerve damage in calf ,Double Vision resolved, Stomach issues. Fell down twice in pain, Carpal tunnel diagnosis resolved, erectile dysfunction, lungs shortness of breath burning in lungs and lower throat ? Lyrica reaction very ill from side effects Thrust yeast infection, Fungus infection on foot, Herpes Simplex. Nervousness in muscles if that if possible.
Pain in every conceivable way
I THINK I HAVE SYMPTOMS THEY HAVEN’T DEVOLOPED DISEASES FOR. lol
God Bless
Hi Fixme, im interested in the fact you had lumps appear- so did I - twice. Did it preclude your EM onset in anyway? I also get the scalded burning throat which is affecting voice
Has anyone else had lumps?
Do any of us have any idea what causes this ? My GP had never heard of it. Im taking all the info to her thursday. She asked me how it was cured or managed. I just said aspirn, overdosing on gaba , B vitamins. how do i know lol! Im exhausted trolling the net looking for answers. She was very interested and im getting a referral to Dr David Bennett London( same as laura). Will keep you informed. Also today the neuro has referred me to vascular specialist for the bulging veins. So between neuro , Em specialist and vascular im sure to get that definitive diagnosis.
Good night all
God bless x