Thanks everyone. Sorry haven't been on been flat on my back for about two weeks or more now. It gets so bad I can't use the bathroom,things are really bad on the lower back. Flared up after I quit the pred again. I can't even use a wheelchair, hurts to sit or stand or even lay with too much incline. I am making it to physical therapy, which is a joke, but they won't do anything unless I go. For years the groin pain seemed like an inguinal abscess, which it still could be, and they are often overlooked but easily treated with antibiotics, last time back flared they gae me antibiotic and told me I had PID and UTI all at once. The antibiotics helped for a few weeks then it came back. Isoniazid made it go away, but sometimes TB comes back active when people are on isoniazid because part of it killing the infection is that it gets rid of the waxy and calcium coating built up around the mycobacterium, then it is free to spread and no longer "encapsulated", but it is also vulnerable to the antibiotics. I hurt so bad, thnk will hae to have more surgery, I can't go on like this. They are going to have to get me a nurse. I hate this about this disease, you are relatively fine for months, live life, even dare to make a few commitments, then something like this happens and people deem you "unreliable" and family gets fed up. I hate it. I just hurt so bad and pain meds no working. No hope of pain management until after holidays.
They keep saying theydon't want me bedridden, but I can't barely even stand to lay in bed sometimes. I'm scared I have cancer in my back, it hurts so bad. Not like my neck, not even like when I didnt get pain meds after surgery, this is horrible. They claim there isnothing on my MRI or xray, butr don't have a recent one. I just know that this has progressed and gotten worse, so bad. And pred seems to help, but my rheumie thinks 'm nuts for freaking out and asking for it. I don't want to take it because all the docs keep telling me I don't need it, but it helps so muchand if I make it go away, they won't ever figure out what it is. Supposedly I have stenosis and herniated disks, but I have that all through my spine, this is worse, MY spine is so stiff and inflexible, no curve to my lower back and I can't bend it.
I'm sorry to complain, but this is why I haven't been on and I"m going nuts. My parents are going to freak out when they see me and take me to the ER for more better meds, probably. Oh well, maybe another ER will find out something. The polyglanduar dysfunction I have puts me at risk for multiple myeloma and my gallium scan showed increased uptake in my lower spine but nothing was ever done. A gallium scan does help when someone competent reads it and a competent doctor treats you.
Take care and hpppy holidays and thanks so much fo the kind replies. I miss you all.
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids