New member, please help

Hello to all, I have been recently diagnosed with EM in my feet. I have had it since 2005 and it suddenly progressed in January of this year. My small fiber neuropathy test was negative which I was really surprised by because my balls of feet and toes get really cold and burn, ache, as well. My EMG was negative. My feet hurt the worst in cold weather as they get very cold. But hot weather is not so good either. I am taking Gabapentin with Amitriptyline but it’s not controlling the pain any longer. I can’t go anywhere because my feet have to be elevated. None of the doctors I have seen understand how to treat it. My dermatologist wants me to go immunosuppressants but I don’t know if I can tolerate that. Has anyone had an epidural or sympathetic nerve block? I have read that they don’t really help but I am desperate. I have not been offered tramadol or anything for bad flares. Taking a shower I have to use a bench to sit on.**I still believe there is a small fiber neuropathy going on because it started out with being extremely cold and the redness came later. Thanks for any help.

What, if anything, preceded the progression? Any major life changes? Do you have other illness? Are there other medications you take?

Like you, I’ve also not read good things about epidural or sympathetic nerve blocks. There are other pharmacological options besides gabapentin and amitriptyline. Erythromelalgia is not known to be immune mediated. Immunosuppressants are unlikely to be effective unless your EM is secondary to an auto-immune disease, then it can be beneficial to treat the underlying condition.

I developed some pain where the sesamoid bones are. Diagnosed with sesamoiditis and my big toe also hurt. Changed shoes and they had me wearing met pads and then the severe nerve pain or something developed in my big toe and in the bone where sesamoid bones are. MRI was unremarkable for sesamoiditis. It started out very cold and not much red flares at all. Now I get them all the time. My big toe is so painful I can only wear one pair of shoes or it sets off a flare, although they hurt all the time and feel numb when walking in shoes. When my feet hang down they turn purple with extreme pain and fasciculations. I also wake up to fasciculations in my toe and left foot, also have them in legs, thighs. So I’m not sure if this is part of EM. I’m going to a new Rheumatologist out of network that is familiar with EM and treats it. I hope to get some kind of help and diagnosis.

I’m sensitive to meds so it’s difficult to treat me. They want to try Cymbalta and Lyrica but I’m afraid I won’t sleep and could have issues with changing the meds. I think Lyrica is quite similar to Gabapentin?

In 2005, I had my first acute flare but not in balls of feet and toes. They were turning purple and red. I took a low dose of hydrocortisone and it helped to turn things around. But they could find an autoimmune cause.

I meant to say they couldn’t find an autoimmune cause.

Was that ineffective this time?

How is your sleep now? EM is typically worst at night.

Aren’t the current meds no longer controlling symptoms? It appears to me there is more to gain than there is to lose by changing meds.

Have you seen a neurologist?

I haven’t been able to obtain a prescription for steroid until the diagnosis was made just recently. They were waiting for results of small fiber neuropathy which was negative and EMG negative. It feels like this never ending waiting game. It’s up to the Dermatologist for treatment and he’s in Italy. The neurologist said to see the Pain Management Doctor. He does not know anything about EM. I take most meds at night so I can sleep. I have GAD unfortunately and the pain and anxiety worsened and I couldn’t sleep until I increased the Gabapentin and Amitriptyline. How do you sleep with being inactive all day? But, you are right, they don’t work very well any longer. I have been on them for 15 years.

There was a cumulative review paper published last year in the Journal of Pain Research that outlines the various treatment options for EM. You might want to review it and/or show it to your doctor.

That can be found here.
A PDF of the paper can also be downloaded here.

The paper mentions epidural and sympathetic blockade in the section about procedural interventions, but notes such interventions are typically reserved for cases that have been refractory to pharmacologic management. I doubt you would find a doctor willing to try that on you having only been prescribed gabapentin and amitriptyline thus far, due to the risk of complications.

EDIT: Also, how well controlled was your GAD prior to your recent progression of EM?

Well…I had been on 2 mg. of Valium for the past 15 years to help with sleep and anxiety. My doctor insisted that I taper off of it because of the new government guidelines. I was really upset about it because of being on it long term and the consequences. I never abused it, or tried to increase it. I was doing really well with my cocktail of meds. I was able to handle it at 1 mg. but about a month later I noticed burning developing in my feet. I really feel the taper probably had quite a bit to do with it. But, I can’t look back and I’m trying to do the best I can.

Long term usage of benzodiazepines is ill-advised. It’s unfortunate you were prescribed diazepam for that long. That was an unequivocally bad idea.

That said, it is a loose hypothesis of mine that stress hormones play a role in triggering or exacerbating EM. That’s why I asked about any major life events preceding your progression.

I agree with your hypothesis. My EM got worse after i had a miscarriage.