Diagnosis seems to be impossible

Hello, I have been living with pain for over 1 1/2 years now. I have been diagnosed with Lymphedema and neuropathy. Finally upon seeing the doctor at neuro sciences at Duke Hospital that EM was mentioned. I am scheduled for part 2 of Endovenous Thermal Ablation, and also to get a spinal cord stimulator.
My General Physician recommended that I reach out to others who have EM because she said a diagnosis of EM is very complicated. After looking up EM she is confident that the meds I am currently prescribed are correct. (Lyrica, Cymbalta, Amitriptyline and flexerill.
I am desperately seeking something that would help with the diagnosis.

You are not alone!
I also have Lymphoedema (bilateral Primary LE in both legs) as well as Erythromelalgia in my feet/toes which is exacerbated by the swelling from the LE.
Having two incurable conditions can at times be such a nightmare. The burning pain from a EM flare is so intense and nearly intolerable even though I take Gabapentin aka Neuronton. I take as little as possible to help dampen the EM pain. Due to the unpleasant side effects I experienced when I was on a rather high dose I reduced down over the past 3 months. I’m currently taking 150mg every 6-7 hours, down from 300mg 4 x per day.
Your doctor gave you good advice to seek out support from others suffering with EM. In addition to this site, there is another good one called EM Warriors.
You’re probably aware of LE sites but if not then check out LE&RN Lymphedema Education and Research Network - this has fantatic info (it’s linked to Stanford Univ Medical school) and links to great blogs etc.

You’re right about EM diagnosis being impossible - it’s so rare and doctors/health professionals are not well educated about it. However it sounds like a you’ve found someone with a good level of awareness at Duke.
Take good care and hope to chat again.


Welcome to the group. There is really no positive to having EM- but meeting the incredible and strong people in this group has been a blessing. I have leaned on many of these wonderful people when I was down.

I was diagnosed with EM (primary) February 2016. I started off with channel blockers and found no relief. I am now taking 150 mg of venlafaxine a day and have found incredible improvements. Before venlafaxine I could not be any where above 70 degrees. Now I am on my way to Vegas- so that should give you an idea about how it has worked for me.

I started off with a low dose, and then I had flares and I uped my dose. I had to up it multiple times to find what worked for me.

Some people find incredible relief, and others none, but there is a lot of research about venlafaxine and EM.

If nothing else, stay connected to this group. We are a creative bunch of people who have learned how to modify our previous lifestyle while still enjoying life even with the pain. You will find hope, ideas, and support here.

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Hi Cat, you’re not alone !! I’m still trying to get my doc
tors to acknowledge the existence of EM and maybe get some form of treatment.
I’ve also heard that effexor is a good option for EM. I’m a bit scared of trying it though. I’ve found this article http://www.seattlederm.org/documents/erythromelalgia%20venlafaxine.pdf.
Apparently serotin has something to do with erythromelalgia and raynaud’s but it’s the effect it has vary from person to person that’s why some people get better with effexors and other don’t
Looking forward to hearing from you :slight_smile: