Did anyone else feel like they were going crazy? That doctors dismiss symptoms to fast without really hearing because they dnt understand them? I would just like to know for sure if I have EM I seem to have all the symptoms of EM according to what I have read and scene, but I would just like to know its not in my head that there is something going on with me my body fights back and forth all day and night of being to cold then to hot last night I had 3 fingers that felt super cold and my index and thumb were burning hot and swollen and as I’m getting into bed now my hands are flaring but feet are freezing ugh, just feels so frustrating
as many of you know
Yes. Been there, done that. I have stopped expecting help from the traditional medical community. I’m done crying when specialists refuse to see me (I’ve asked them all). As my neurosurgeon said many months ago, I’m a black mark on his record. I fully believe any other specialist refuses to see me because they can’t make money on me and refuse to add another “black mark” on their own record. I am blessed with a primary care physician who acknowledges my pain and is willing to provide pain killers as needed. I’m blessed with family and friends who acknowledge my limitations and still stick with me. I refuse to allow ANYONE to call me crazy. If they do, they are gone from my life. Mental illness does not manifest itself with visible swelling, redness and pain. They are the crazy ones. I am perfectly sane. Just in pain.
So true Larry,
I to am blessed to have a loving family who sympathize with my pain. The thing with this is when ur in a it’s can be debilitating, I push threw because I have to work and I have kids as far as the pain part I have not reached the top of the shelf as many of you have it limits me at times walking when I’m at work for 12 hrs on my feet in shoes and socks multiple times in a shift I have to take my shoes and socks off because my feet are on fire but I’m not crying in pain thank Jesus for that I hope that it doesn’t get to that point but it’s deffinatly not comfortable by any means and does make things harder to do at times. I’m sorry for your pain and it sounds like its really bad. I am grateful for this site that has helped me to meet people like you and talk with others dealing with the same things. I know I’m not crazy none of us are this is a true disease it’s just people who dnt understand it shut it out and make us feel as though there isn’t anything wrong and just because you dnt have the answers for people doesn’t mean you just ignore there pain it’s visibly obv something is wrong and I have taken many photos to prove the flares because in the office I may not be in one right then.
Girl, you sound just like me! Hang in there is all I can say. I am still waiting for a confirmation diagnosis as well. All that my pain management doctor is saying is that I have “symptoms of EM” but will only give the diagnosis of “chronic foot pain.” Plus, had a flare up just a few days ago where my feet were burning like they were on fire and then before and after that they are freezing just as long as I’m not actively walking or doing too much standing which I haven’t. I feel the same way you are like I’m going crazy. You’re not alone!!! I’m feeling like a frozen dinner with all this back and forth from hot to freezing cold. Not even the capsaicin effects my feet. lol I feel nothing when my feet are this cold. Every now and again one of my fingers goes cold and numb as well, but I haven’t reported it cause it hasn’t been consistent and haven’t really thought about it too much because it’s my feet that I am so focused on. You really need a doctor that is familiar with EM like a pain management doctor and be sure he has had patients with EM he’s treated and find out how many because most doctors are ignorant of EM. Most have no idea of what EM even is!
Selah117,
My mom has Raynaud’s so when this all started I chalked it up to that, but then it was also when I was to hot so I was like this is weird that’s not a Raynaud’s thing. So after the first year went by I tried to ignore it best I could but its only gotten worse my hands are the worst part of my body but it went from that to my feet to my face and ears and chest and upper arms as well. Rheumatologist said he had no idea all my tests came back normal said I needed a derm or vascular. The one derm was useless said well it’s not happening now even though I showed pic they were a joke. went to vascular he did many tests said yes I had Raynaud’s and then sent me on my way with no discussion of EM and simply said to follow up in a year. It was only threw my own research that I read about EM and all of my symptoms seem to point to that I did also read that Raynaud’s and EM can coexist together. I have a pain dr already that treats my cervical spine pain I had a fusion 3 years ago but they dnt wanna talk about anything other than my neck so I have been at a loss.
I’ve been in bed since Christmas Day on drugs 24x7. Was hoping the new year would bring clarity of direction, but I’m not seeing it yet.
I had a cervical fusion a little over a month before this started (6 months ago). I’m working with a naturopath now. We will be doing metal allergy testing as soon as she can find a lab that will do what she wants. Trying to rule out the metal they used to put my spine back together.
I’m also meeting with a dermatologist who knows what this disease is. I plan to turn the warm water on in the exam room and put my hands under it. Flares every time. If she won’t diagnose from that evidence, then I will take a rest from traditional medicine. I just don’t have the energy anymore to deal with them.
Sorry to hear about your symptoms. I tend to have similar symptoms going from “flush hands and feet” when warm and “whitened” hands when cold. A neurologist at Stanford Univ has confirmed that I have EM. However due to my “cold and white” symptoms, I believe I have Raynauds. I believe these two diagnoses are really ONE medical condition, where your extremities over-react to temperature changes. I sent off my “theory” to the neurologist and awaiting his response.
Hi mlew,
I’m curious who you saw at Stanford neurology? I’m just nearby and am always looking for good doctors to add perspectives. Thank you! 
Larry
I have my 5,6, and 7 fused from an injury lifting a patient. I have read some things about nerve damage that may be a contributing factor but not sure how accurate that is. my fusion was 4 years ago and my symptoms started about 2 years ago. So your dr thinks that the metal from your fusion may be a factor for your EM flares? You will have to keep me posted on what they find out. Ya if I put my hands in hot water or even warm they turn blood red. I have also noticed during a flare if I raise my hands in the air above my head I can feel the blood rush down and it feels much better but soon as I put them back down it goes right back and lets just say I cant walk around with my hands above my head during the duration of my flare lol.
Mlew
My mom has Raynaud’s and her hands literally turn death white and she cant feel them and has to go run warm water to get blood back to her fingers. Mine never get that bad just really cold then really hot, but also tonight I got in an argument and my entire face was on fire for over an hour. And I was doing some cleaning in the yard and it’s only 60’s for the high and all of a sudden I could feel my feet swelling and burning in in flip flops. So I agree are body’s dnt regulate over temp right so are bodies and constantly fighting back and forth being to cold and to hot its like the temp gage is broken.
Hi standing_cat,
The doctor at Stanford Neurology Dept is Mitchell Miglis,
an autonomic disorders specialist. They’re located at 213 Quarry Rd
650-732-6469. However, I believe you need to see a “regular” neurologist
first and then be referred to them. Give them a call to see what you have
to do. I saw a neurologist in Berkeley first, then after running some tests,
they referred me to Stanford.
Dr. Miglis conducted a test to see how my sweat glands functioned.
He determined I have limited sweat gland function, which may cause the EM.
He thought there is a genetic basis to this and I probably have some small
fiber
neuropathy. I haven’t heard back from him regarding his thoughts on
Raynauds.
Mike
Thank you for the info, Mike!!
“So your dr thinks that the metal from your fusion may be a factor for your EM flares?” -
Not necessarily. We had a brain storming session and this was but one of many ideas. No traditional doctor will address it, but the naturopath said she would. Unfortunately, the lab she usually uses closed, but is in the process of being acquired by another company and should reopen in a few months. I’ll be sure to share the test results then.
We also had our well water tested for bacteria and metals. All are in the “normal” range according to the reports. But I will share the report with the naturopath. At least she understands that “normal” for one person isn’t necessarily “normal” for another.
Larry,
Pretty interesting never thought about that I also grew up drinking well water back in Texas that’s been years ago but would love to hear how everything turns out.
Most of the medications you listed as having tried on your profile page are not usually indicated as being helpful for erythromelalgia. Have you tried others? It doesn’t seem you’ve tried enough to say traditional medicine can’t help. There are better therapy options than those you’ve indicated. Before giving up, take a kitchen sink approach. Throw everything at it traditional medicine has to offer. Don’t quit after trying just an opiod, corticosteroid, NSAID, and trcyclic anti-depressant. Of those medications, only amitriptyline is even occasionally beneficial in treating erythromelalgia. You need to try other classes of drugs.
EDIT: Just to expound a bit more, let me explain why most of the drugs you’ve tried are not beneficial in treating erythromelalgia.
Hydrocodone is an opiod, a narcotic analgesic (painkiller). It’s only beneficial in treating the pain associated with an EM flare. It would not stop a flare from occurring or make it any less severe. It does not treat the underlying condition.
Prednisone is a corticosteroid. Its primary pharmacological benefit is as an immunosuppresant. However, erythromelalgia is not an auto-immune disease. EM is not caused by the immune system errantly attacking the body. Unless your EM is secondary to an auto-immune disease, prednisone is not going to be beneficial.
Diclofenac is an NSAID (non-steriodal anti-inflammatory). Inflammation is an immune system mediated process. Again, erythromelalgia is not an auto-immune disease. The redness and heat found in erythromelalgia is erythema, not inflammation. An anti-inflammatory is not beneficial to EM patients because there is no inflammation involved with EM.
I guess I said that backwards. Traditional medicine has given up on me, not the other way around. I agree, I COULD try other medications, if only I could find a health care provider that would be willing to give it to me. I have had four rheumatologists, a hematologist, an oncologist, all say “your symptoms are not something we treat”. I’ve had one neurologist mention erythromelalgia but would not treat it nor would she refer me to someone who could. My neurosurgeon says I have some weird disease and won’t talk to me any more. As my “good” insurance, which allowed me to see anyone in the US, expired last year, and my new insurance is limited to northern Idaho, I have called every specialist in my network. None treat this condition. My primary doctor is not willing to diagnose it or treat it. Although if I beg, she may try to get me meds. Historically, the insurance company says she can’t prescribe that med and I need to see a specialist to get it. So I’m stuck. I’ve driven thousands of miles over the past 7 months trying to find someone who will help. I’ve driven 800 miles round trip to walk into an emergency room of a hospital that I thought would at least put me on a path to someone who could help. Instead, they handed me a prescription for more pain killers, and a referral to a rheumatologist who couldn’t help me. I’ve had Cleveland Clinic rheumatology refuse to see me and told me I should see a functional doctor. i.e. alternative medicine. And around and around we go.
Tomorrow, I will again as my GP for another drug to try. But honestly, I don’t expect anything to come of it. All she does is sigh when I ask for help, then hands me another prescription for pain killers.
So as I see it, I have no choice but to look at alternative medicine. Right now, I’m trying APIS tincture which helps lessen the flares. And we’ve identified milk and soy intolerance, so no store-bought food for me.
I know in my heart this is coming from the surgery I had on my neck, and a severe unresolved problem with my lumbar spine, and is neurological in nature, compounded by hashimotos, and adrenal insufficiency. I just cannot find anyone to help me, except for a naturopath.
Thank you for your input. I’ve read a lot of your posts and have learned a lot from you. I welcome any advice you might offer.
Did your surgeon rule out CRPS with a bone scan? My doctor did a differential diagnosis between CRPS and EM. The symptoms can be similar. CRPS typically occurs after injury or surgery. While CRPS is most often unilateral, it can be bilateral. Considering you had spinal surgery, I presume CRPS was first considered? I ask because your neurosurgeon’s “black mark” comment is very odd. What does that even mean? Does he think he botched your surgery? CRPS can result from surgical error. Saying you’re a “black mark” on his record almost sounds like an admission of guilt. If your surgeon hasn’t even mentioned the possibility of CRPS with you, that would be very troubling.
Just reread your responses, Larry. Your timeline for onset of symptoms after surgery (about a month) does put you within striking distance of when CRPS would start. Symptoms first begin to be seen usually within 2 weeks after surgery.
I also think your stated pain level more easily fits CRPS. That was something I discussed with my doctor when he did the differential diagnosis. He initially thought I more likely had CRPS. I told him I didn’t think I was in enough pain. People with CRPS are in near constant pain and I was nowhere close to that. That you’ve been bed ridden and taking painkillers around the clock sounds more like a pain level associated with CRPS.
I have two different spine problems. The first resulted in C4 through C7 fusion. Of interest is the first surgery failed when the screw in C6 fractured the bone soon after returning home. Note that there was no cause for the fracture, as I was extremely careful not to do anything. When the surgeon opened me back up two weeks later for the second go-round, C6 “oozed some thick white unknown material” when he removed the cage and screws and discovered the fracture (which interestingly did NOT show on the X-ray). He said C6 was extremely soft and oozed this white stuff. No tissue sample was taken, unfortunately. This I believe is the source of the “black mark” comment.
The second spine problem is L5-S1 injury 30 years ago. The first discectomy surgery in 2011 temporarily relieved the pain but it is back in full force. This I believe is the real source of my body pain. The two vertebrae have no disc between them anymore, so they are constantly rubbing and bruising each other every time I move.
Fast forward to 2 months after the second neck surgery. My first day out of the house since the surgery, I spent the day at my son’s baseball double header games. Total of 7 hours away from the house. Near the end of the day, my lumbar started exploding in pain. By the time we got home, I was a puddle unable to move. The pain went from lumbar, and spread, over a week’s time, to every part of my body - bones, muscles, skin, organs, and my hands and feet were swollen and red and extremely painful. Nobody could touch any part of me. I believe this is still the case, but some of the pain is so extreme, it makes the other body part pain minor in comparison.
The neurosurgeon declared my second neck surgery a success just based on an X-ray, even though the initial surgery failure did NOT show on an X-ray. and he refused to do another MRI or bone scan to be sure. He also said he could not fix my lumbar, which showed bone bruising on the MRI, and suggested a spinal cord stimulator. He never mentioned CRPS by name, but did mention that I likely developed “some weird autoimmune disease” or polymialgia rheumatica or some such thing and told me to see a rheumatologist. After researching the spinal cord stimulator, I concluded that there was no way I could tolerate the initial test, since they have to insert the electrodes while you are awake. And the success rate was not good.
So based on what I’ve read on this website, and now your CRPS comments, I will ask my GP this morning for Cymbalta and Lyrica after sharing the CRPS information. I’ve been trying for 7 months to get a second opinion on my spine problems. Will continue to try. I was on Lyrica at the time this all exploded, but I hope that adding Cymbalta might help.
What type of doctor did your differential diagnosis?
All that sounds really rough.
It’s sort of interesting for me to observe that some people are already on some typical EM meds at the time of their onset – I’ve definitely read people being on gabapentin here for a while at the time of their EM onset. I was on highest dose of cymbalta for another reason at the time of my onset (and about 5 years prior to my onset). It’s like we are predisposed/hypersensitive to pain maybe, but it’s also interesting to me that taking those types of pain drugs wasn’t enough to stop the EM from occurring.
I hope your GP can prescribe you some meds like the Cymbalta and you get some relief from your pain soon. XX