Hello, I’m Cat. I’m 48, Scottish & have lived in County Durham for 20 years I’ve had symptoms for almost 4 yrs & was diagnosed with erythromelalgia Dec 2017. I’ve tried niphidipine, aspirin, quinine, capsicine cream, propanol, gabapentin, lidocaine cream, clonidine, duloxetine & currently on 12.5mg of Carvedilol twice a day. I’m getting a very slight benefit from it but can’t tolerate a higher dose as it’s harsh on my sensitive stomach. I use cool gel pads on a night. Unfortunately my GP has only treated 1 other person with erythromelalgia so treatment is very much trial & error. I
Dear Cat,
I’m sorry for your pain. I have a lot of pain too, I basically had to dx myself and then my doctor, a neurologist confirmed. I have MS for 26 years. He said, in my case that this is an autonomic involvement of the nervous system. MS is a central nervous system condition. He explained that the autonomic nervous system is within the central nervous system. Autonomic system controls our breathing, heartbeat among other functions that we don’t think about, (it just happens on it’s own). I have EM now for three years but to complicate it I have Raynaud’s disease since 19 years old. I’m 65 now. The Raynaud’s wasn’t too bad until recent years. Many doctors believe that Raynaud’s and EM are the same illness.
Getting to it, Cat, I take 900 mgs of Gabapentin and 1 full enteric coated aspirin with my dinner. The Gabapentin I take 300mgs 3 x’s a day. You must be sure to take it every 5 to 6 hours. I know you said you tried it but you didn’t say the dose you took. I was on Gabapentin for the MS but very little and it wasn’t enough. I’m not perfect but the meds help make it very bearable. I have a lot of pain in my feet, as I’ve explained on this site I have arthritis in my feet and horrible neuromas too, in the balls of my feet. Callouses and corns in the balls of my feet, a corn and callouses on the big toes. Cannot be totally remove. All this ad the Raynaud’s and MS are very debilitating.
Finding a doctor is difficult as most do not know what it is.
I went to vascular doctor and I use my neurologist. I’m not familiar with Scotland’s counties. But try the universities research departments to possibly recommend a good neurologist or vascular physician.
I live in New York and not even here are the doctors educated about the illness.
Stay in touch. Please try my regimen. Let me know how much Gabapentin you tried. You may need more. That’s what my experience was. We are not alone as you can see from this site.
People have this condition all over the world but we are spread out. I’m grateful that we have computers in this day and age.
Good luck. Come back and let us know how you are doing.
2 Likes
Hi there. I trialled a lot of drugs which made me feel like a zombie and didn’t help. Currently taking amitriptyline 40mgs at night which does give me a better night’s sleep. I do sometimes get up to change ice packs but the sleep seems deeper than before. I am not too groggy in the morning and ‘normal’ by say 9 am. Amitriptyline emerged at the best drug for neuropathic pain in a meta-analysis (last year I think). Although I am still restricted by my EM I have settled with this minimalist treatment and have a reasonably clear mind which I prefer. The only reason for not taking the amitriptyline to a higher dose is that I have a very slight tendency to atrial fibrillation. Hope you find a good solution for yourself
Suggest you get referred to a neurologist. If he can’t do a genetic test to determine whether it is primary or secondary EM, then ask for a quick referral to Dr David Bennett at the John Radcliffe Oxford. It wd be worth the journey as he is researching primary EM and it would be good to meet him. Great guy. All the best!
1 Like
Hello Cat.
From the TEA website your nearest EM doctor is:
Dr. Sanjay Pathare
Rheumatologist
James Cook Univerity Hospital, Marton Rd Middlesborough, UK, TS4 3BW, UK
Phone 01623 854757
Good luck,
rubbertoad
1 Like
Thanks Rubbertoad. I’m already under a rheumatologist at the Woodlands Hospital in Darlington, Dr Bridges. He did say that EM specialist were like hen’s teeth. Lol.
Thanks for your reply Ann. Hopefully I’ll find someone who can help a bit more about than the help my GP or current rheum can give. I’m grateful too for the access the internet gives us to battle this nightmare disease. There’s quite a few helpful groups on Facebook if you have access
Thanks for replying ajh. I’ll pass the details on to my rheumatologist & see if I can get an appointment. It’s awful having to go through all these meds to get something significant that helps. I’ll let you know how I get on.