Thank u for accepting me in to your group🤗
I started with fybromyalgia after having an operation Sept 2019. Then from February this year, I first started noticing that my feet were purple if I sat or just stood. Then the redness came, along all my toes, along the sides of my feet to my heels, no pain at this point. Fast forward 5 months, I now have red, blotchy puffy hands on and off throughout the day, redness and purple regularly through the day in my feet, and swelling when warm or walking. My main problem now is the pain at night, in my feet and toes!! Every single night without fail. I’ve just had nerve studies and they have come back normal. Is it correct that it may still be nerve pain but it won’t show as anything for a good few years? I’m so confused with this illness, my own gp is, willing to learn all about it but doesn’t have the foggiest and the neurologist I’m under with the NHS is really hard to get hold of, I’m waiting for a follow-up appointment to discuss my negative results but feel this will take months as nothing sinister has shown up, I have so many questions. Could anyone advise whether it would it be worth seeing a rheumatoid specialist instead?
Hi Kaz! I’m sorry that you’re having such a rough go with this.
Regardless of the nerve study results, the proper doctor for the fibromyalgia would be the rheumatologist, so I would encourage you to get the process going. In terms of your nerve study, those tests just look at the large nerves. But there is something called small fiber neuropathy that won’t show up on the nerve conduction studies, but can cause a ton of burning of pain.
I hope that you can get a handle on this. I have small fiber neuropathy, and it can be pretty miserable at times.
Sharon from ModSupport
Hi Sharon
Thank u kindly for your reply.
I had 2 sets of tests, one for large and I thought the other test, thermal test was for small nerve neuropathy, I may be wrong.
The Neurologist said it was a good result but I would like to know what is actually causing so much pain if its not the nerves? I have so many questions regarding this awful illness but no one has time to spend discussing it because of covid. Apparently I will have a follow up appointment but it could be months!! It’s like he’s said ‘yes it looks like erythromelalgia by your photos and description, now just get on with it on your own’
I’m sorry if i sound a bit frustrated. Can I ask u if you’re pain has gradually got worse and at what point did your tests show neuropathy? Also, do u suffer every night with the burning pain?
Thank u
I’m so sorry and I know how frustrating it is. I suffered greatly for years until first I went to Cleveland clinic and saw vascular doctor. My nerve study was also good and have no genetic markers. He tried me on cyproheptadine and after about a month I saw some improvement. May I suggest you look up Dr. Cohen and his articles. He had this also and after reading much of his research I found that this drug also helped him. He has a lot of info about his study. So I tried the magnesium he mentioned and 625 mg of aspirin along with the Cypro and have much improvement. It’s hasn’t gone away and I still have flares but not nearly as intense nor as often. I know the aspirin makes a huge difference for me. I’ve gone off a few times and I get worse. There are so many variables and what works for some does not work for others. I hope you can have success in finding something that works for you. God bless
Thank you for taking the time to reply, I greatly appreciate it.
I’ll definitely have a read, I’ll also ask my doctor about the medication, he did say that after trying me on many tablets he was at a loss as to what to prescribe next.(I seemed to have had so many side effects with them all. I have said I’d go back onto pregabalin as it did help for a good few hours at night but I felt so lethargic on them the next day. I have a 5 year old and really don’t like the tiredness. Can I ask you if there are side effects to the one you’ve mentioned?
Thank u
Your history with ER is very similar to mine. I also have peripheral neuropathy, and it’s small-cell related. I can imagine the frustration you’re getting from your doctor’s non-response! My experience in getting a medication regiment was…being sent from neurologist to rheumatologist to vascular, and landing back with my neurologist who landed me with amantadine for the burning pain. My understanding is that either my primary care or my neuro guy could prescribe, and at first, my primary guy did…things changed as the pandemic limits us.
My advice is to ask both your primary and neuro for a prescription to try getting relief…it’s very much a trial and error and my own experience included 3 trials til we found what helped most. Fibromyalgia shouldn’t be a factor in your erythromyalgia symptoms, from my perspective. I’ve had a fibro diagnosis, previously…but it’s proven to be a symptom and not a disease. Hope that helps. Feel free to message me if you have questions.
Thank you AngieC
I’ve tried amitriptyline, nortriptyline, pregabalin, duloxetine and all have strange side effects for me, duloxetine was the worse one!
I’ve just bought some cold socks from amazon, going to give them a try before I go back on pregabalin. My Dr has warned me that the preg is now classed as a controlled drug and to just try it for 3 months then come off to see where my bodys at. Can I ask what you have found works for you?
I’m quite surprised at how advanced it’s progressed in 5 months, but thankfully I’m not suffering all day, if the outside temp is ok, I can cope, it’s mainly at night for me, whatever the temp, the pain is very uncomfortable. I also can’t sleep on either side for more than a few minutes, everything goes tingly and numb, now that is a, weird one and no-one knows why that is🤦♀️
Fybromyalgia for me is pain in different parts of my body and just adds to the tiredness. I am learning to differentiate between the two as time goes on. I was fit n well before an op last sept, now I have Em, Fm, dry eye syndrome, Ibs and now osteoarthritis.
The battle for me is understanding about what’s going on with my body, I can cope with things if I know more about them but because of the Covid-19 you don’t get to see anyone face to face to talk about the what’s and wherefores. I’m so glad I’ve found this page, I’m finding we’re all in the same boat on here, so thank u for your support 