EM and other neurological disorders

General
1

I wanted to come on here to talk about the connections between erythromelalgia and a lot of more commonly known and understood disorders. I think sometimes the medical field gives so many labels that it separates communities that have a lot of common ground– and in doing so, prevents people from finding treatment.

I used to see my EM as a very foreign and untreatable condition, because the condition itself is rare. I was recently diagnosed with ADHD and autism and began to learn about the elevated number of individuals with both ADHD/autism and GI issues (i.e, IBS, constipation, slow gut motility), POTS, autoimmune disorders, and endometriosis. The common link between all of these conditions is peripheral neuropathy, as neurological differences like autism are linked to other nervous system dysfunction in nerves throughout the body that communicate information to the brain. As someone with lifelong chronic constipation, erythromelalgia, hyperhidrosis, sensory processing issues, ADHD, and autism, I finally began to see the bigger picture: nerve dysfunction.

You may be thinking, duh, I know EM is caused by nerve dysfunction. But understanding the association between EM and this range of other disorders is the greatest tool we could have, because it opens the door to a variety of medications/treatments that were probably never recommended to you.

The research is yours to explore, but I’ll leave you with some ideas as a starting point.

  • Transcranial magnetic stimulation
  • Low dose naltrexone
  • Alpha-lipoic acid
  • Amitriptyline
  • Gabapentin
  • Pregabalin
  • Duloxetine
  • Coq10

I also wanted to finish this post by saying I did get an endoscopic thoracic sympathectomy one year ago this month, which cut the nerves that control excessive sweating/redness in my hands. It has made a world of a difference in my erythromelalgia/hyperhidrosis symptoms. I experience slight erythromelalgia flares now in my right hand when I am in high stress/heat conditions, but it is no longer debilitating the way it was. I am so eternally grateful that the surgery went well and would highly recommend looking into hyperhidrosis surgery if that is an option for you. Please don’t hesitate to reach out if you have any questions. I’m here for all of you.

4 Likes
2

Thank you for your post. I have had the diagnosis of “probable erythromelalgia” for many years. The symptoms began in elementary school. I also have autonomic dysfunction, autism, and motility issues. An esophageal manometry diagnosed a motility disorder in my esophagus and I experience recurrent SIBO (diagnosed with the lactulose hydrogen breath test) which I believe is due to poor motility and my abdomen usually being distended. I will look into the treatments you have listed. Thank you. Is there a specific kind of doctor who would treat these issues together? I currently have different specialists (GI, ENT, cardiology) for each seperate issues.

1 Like
3

Hi, your best bet for someone to analyze the whole picture is a neurologist. They will understand the erythromelalgia, autonomic dysfunction, autism and motility issues as primarily related to nervous system dysfunction. I would recommend seeing someone who lists at least one of your disorders as their speciality (a neurologist specializing in autism is probably the easiest to search for). Even if they don’t specialize in one of those, remedies for neuropathic pain can be very effective for the issues you described, and they certainly are familiar with treating that.

2 Likes
4

Thanks Elle, true I am seeing neurologist/anesthesiologist and derma and cardiologist

I’m new here and just diagnosed 4.5 weeks ago and it acute. Look forward to sharing info and have read everyone’s posts and using that info to help myself

I did get vitamin D checked and it posited that low VITD can exacerbate EM, am getting B`12 shot and Vit D shot to see if helps while I was for Em specialist apt in August

Kindest regards
Heidi