How many of you have Fibro. And lupus? How is it treated and how do you cope with it? They are thinking I have that now and it’s a big part of my pain and fatigue. The rheumy. Also said well now I’m not sure you have lupus but in the same breath said fibro. Goes with lupus??? What?? So if I don’t have lupus what causes mouth sores, interstial nephritis, ulcers, high high inflammation markers, positive Ana and and and… I’m so confused!!!
I am no doctor but what you describe is a is lupus with fibromyalgia. It is a very common combo. You seem to have the blood markers for lupus and all the symptoms, I don't understand why he is confused? That just makes you more confused.
I have both diseases and my blood is negative lately, but I feel terrible right now and my doctor doesn't question it.
I'm sorry that you are having such a hard time, I see no reason for it. I am just coming from experience.
Hugs, Geneva
Hi Louters, it sounds like maybe a second opinion is in order? What is your rheumy’s plan now? Are they doing more labs or tests? Did they discuss possible treatment options with you? If you are interested Ben’s Friends has a support site for Fibro. Feel free to join and check out the information there. You can find the list of all the support sites on the home page. Please keep us updated on how you are doing, if it’s understandable to feel confused as it sounds like your doctor is a bit uncertain. Hugs.
I do! amomgst many other conditions I have been diagnosed with. The treatment I was initially put on was Lyrica and Tegrotol. I took the meds for about two weeks in 2012 and quickly stopped it because I didnt like feeling so "slow" mentally.
Ive found that through the past 2-3 years this has progressed to me having a very poor memory. Ive been told that most lupus patients complain about loss of their mental agility (wit). I really miss that about me! I could be speaking about smething and have my mind go completely blank mid sentence or forget a regular every day fact completely.
Thanks everyone! No treatment plan except to wait till June to go to a 3 day fibro. Clinic thing. Nothing for lupus I am currently on pred. And they want me off of that so once I do that nothing is controlling my lupus. Last time I got to 3mg. I got super sick and my inflammation markers started to rise. So I’m torn confused and not looking forward to getting sick again. I’ll be going back to my primary and seeing his intake on all this. The other thing I am confused on is I’m on two medications they use for fibro . Gabapentin and flexeril for over a yr. Now and no change. …?
Sounds like you really need to get a 2nd opinon, especially since you're already on the meds for fibro, maybe your primary will have some idea's I hope for your sake you don't get too sick again.
I am on Gabapentin for the Fibromyalgia and it works for me. I am taking 2 injections a week of Acthar Gel and it helps. I start hurting before the next dose. My doc does not believe in Fibromyalgia but told me to stay on the Gabapentin if it helped. My Internist had put me on it.