Hi I'm new and struggling

Hi, I’m new on here. I’m female, 56 and in the UK. I haven’t been formally diagnosed yet, but my symptoms are obvious. Looking back I think I had signs of EM about 2 years ago, i.e. redness and swelling above my knees and my right hand sometimes looking pinker than the left, but I just thought this was due to injury and insect bites near my knees. In January this year though, I was out walking my dog and my toes got extremely cold and afterwards I developed what I thought was chilblains as my toe tips went pink/red and did not seem to heal properly. Then in February I took a shower whilst I was feeling very cold and afterwards my knees and thighs were flaring orange/red and painful and remained like that all night. Since then my knees have either been purple when I’m cold, pink or flare up red and sore. About four weeks ago I noticed the soles of my feet were very pink/red and this has got worse and they become slightly swollen and hot also now, especially in the evening/night and in the last week my toes have starting flaring and my feet go red if I don’t raise them and sometime my whole legs flare and it frightens me. Both my hands now turn red and then cold. I suffer with anxiety and my GP agreed to put me on Pregabalin, I’m not sure if it helps, but last night I didn’t take it and had an awful night with flaring feet and legs, and I had to keep my legs uncovered, but the rest of me felt cold. I’ve had a full blood count, rheumatoid factor, thyroid function, liver and renal function, autoantibodies etc and everything came back normal, except for a slightly low potassium, which I put down to decreased appetite. I am awaiting the results of further tests including genetics. I have had meltdowns because of all this and got quite distressed last night as my partner, who doesn’t live with me, lost his temper and told me to stop feeling sorry for myself and that I was selfish and negative, but I was just frightened and this is so new I’m trying to get my head round it, then I had a really bad night last night with flaring. I’m glad I’ve found this group as at least people on here understand, thank you if you have read this rather long introduction. Karen

I just wanted to add a bit more health history. I had a tick bite when I was 13 years old, I have had a knee flesh wound injury when I was 17 and a total abdominal hysterectomy for endometriosis/adenomyosis when I was 45. I had a neck injury when thrown from a horse and I have sacroiliac joint dysfunction which is sometimes painful, I also have tinnitus.

I’m sorry your significant other doesn’t understand. We on this website do. This is an absolutely horrific disorder and shouldn’t be taken lightly. I have gotten decent relief from high dosage of gabapentin; however, I to have symptoms flare if I miss a dose.
Good luck,

Thanks for your reply. It’s good to hear you’re getting some relief with gabapentin.

Hi Karen. How are you getting on ? Did you get any more test results back?
I much prefer pregabolin to gabapentum but pregabolin precludes me from fishing and I do a lot of salt water fishing.