My name is Laurie (a.k.a Larry)

I developed Hyperalgesia in June of this year, after 3 consecutive surgeries within a two month time frame. Even a gentle touch anywhere would incite a primal reaction due to the extreme pain - everywhere. My GP and the neurosurgeon thought I had developed some kind of auto-immune disease. After struggling months to even get an appointment with a rheumatologist (All of them wouldn’t even call back), I walked in to an emergency room. The result was more NORCO and an appointment with a rheumatologist. I believe I had every blood test known to mankind. All were negative. I’ve also seen a neurologist, who muttered something about erythromelalgia, and an endocrinologist who had no clue. The rheumatologist mentioned erythromelalgia but said she doesn’t and won’t treat that. I’m hoping that diagnosis was put in my chart. But I’m still awaiting the receipt of that document. I’ve had 15 MRIs, ultrasound, xrays on 80% of my body. All show some arthritic degenerative changes, the most severely urgent was in my cervical spine. I’m 53, but the surgeon said my neck was 100 years old.

So, I had C4-C7 fused this past spring. Two months before Hyperalgesia set in. With the help of my GP, we’ve been able to tamp down the all over body pain, but not my hands, feet and face. Those flare when the ambient temperature deviates from 60 degrees.

I’m currently taking white willow bark as a natural alternative to aspirin (to save my stomach), and amitriptyline to help me sleep and pain meds as needed (which is most of the time). I have a hard time walking or even standing for more than a half hour, which severely restricts my activity. My hands always hurt and fingers are stiff. The swelling and redness are eased by the white willow bark, but not the pain.

I realized I hit the end of the “traditional” medical care road recently. Even Cleveland Clinic turned me down for an appointment. I’m currently looking for a Functional Medicine doctor. But I won’t see anyone unless they know what erythromelalgia is. Most do not.

I’m so glad I found this community! I thought I was living in the twilight zone because every medical doctor, with the exception of my GP, refused to help. So I turned to internet research and found you. Thank you. I’ve already learned so much from reading this forum. You have given me back hope and direction.

as I tell everyone here- please be sure to rule out lyme disease/coinfections, medical drs will treat you like you a re crazy , but can be the source of all your suffering- also very hard to get it to show up on blood tests especially if you have been sick a long time- the sicker you are the harder tit is to find in blood work- find a lyme literate dr- you can find one by going to ILADS website- there are discussions here -you can look them up

Thank you. Lyme was dismissed by GP immediately after the basic blood test for it. Now once again, on your advice, I must revisit that and dig deeper. I have been sick for a long time, but the erythromelalgia only surfaced six months ago. I have many other “mystery” problems. Lyme has possibilities.

Sounds pretty much like EM to me. Have you tried the cardio aspirin, no effect on the stomach as it is a coated pill. I can “understand” why some drs refuse to diagnose EM as it is a chronic disease that is very difficult to treat. I find Lyrica (pregabalin) combined with Amitriptyline or Cymbalta works for me together with aspirin. Heat is the worst enemy for EM. Try Alpha Lipoic Acid for the over sensitivity. It is a anti-oxidant. Hang in there, someone will be able to help you.