Well, maybe I don't have Lupus afterall. I had 21 more vials of blood drawn yesterday. I also had upper and lower arterial doppler, so now I wait for the results.
My vascular disease specialist did diagnosis me with EM and Raynaud's at my very 1st visit, so this was good news to me.
My symptoms are progressing rather rapidly since I experienced the first symptoms & found this support group. I am in pain almost every day. The dilated vessels that cause the heat are extremely problem-some. I went to get a few groceries this morning & had to leave early because my feet were on fire & hurting...now I'm at home and have my feet propped up. I recently had to leave my job because I couldn't perform my daily duties like I use to. I would file 3 or 5 patient charts and have to stop because of the flare/episodes in my feet and hands.
Trying to be positive is key...I know this; however, some days just BITE! ;)
My vascular specialist prescribed neurontin, which I've heard not great things about --- anyone taken this and have good/bad things to share? Also, she mentioned something about a sympathetic nerve block (or something like that)?!?
Thank you in advance!
I am currently on gabapentin generic neurontin. I just began transitioning from Lyrica because of the wonderful things I have heard about gabapentin. You will need higher doses of gabapentin increased slowly over time. Please be sure to give gabapentin a chance because I personally know of several people it has helped tremendously.
I have also had sympathetic nerve blocks done by my pain clinic. In order for them to work best you need to have them done in a series. Mine were done in a series of one a week for 4 weeks in each foot with cortisone administered by x-ray. I then had another set done six months later. I personally had some relief from from these blocks especially in my left foot. To this day my right foot flares more and worse than my left foot.
I am currently trying some new medicines in combination with my gabapentin. I plan to post more after I have built up and given the meds a chance to work.
I hope I have helped some. Good luck. If you are interested in communicating more private message me... I communicate more on facebook.
Hi , My name is Marsha and i am new to the group . I am like you with a double diagnosis of EM and Raynaulds . My Dr. put me on Gabapentin 300mg x 3 times a day. I have to be honest , i couldn't take the side effects of feeling drunk , sleepy all the time and just feeling like i was in a whole other world !!! It was horrible and i had to stop except at night. I am homebound because of the shoe issue and also i can't let the sunlight touch my skin .... I feel like a Vampire ! This is so depressing for me , i hope you are not feeling that yet . I also am having trouble telling people what i have ... they don't understand and i don't know how to explain it very well. Dr. Appt. in September so i hope he can figure out something else for me to try.