Welcome Hopeful! We're glad to have you here. You should come on in to the RA section - that's where everyone hangs out! If you post there, you'll be sure to get some howdy's!
Hi Hillhoney!
Thanks for the re-direct. I will start with th RA group, as advised!
Thanks again!
I like your attitude "Hopeful"; you'll be a great inspiration to the rest of us. Welcome!!
Come join us in the RA section. We've got a great group of friends here and no matter what "group" you may find yourself in I know you'll find load of friendship and support here.
Again....Welcome. We're glad you're here.
Welcome aboard. It sounds like mixed connective tissue disease which is an overlap of autoimmune diseases. That does make it hard to diagnosis and treat. But you should be getting treatment besides pain meds.
Are you seeing a rheumatologist? I wasn't clear on that.
Your story is much more familar than you think. I have FM, RA, Sjogrens, mixed connective tissue, vasculitis....could go on but don't want to.
Getting to the underlying disease is the best reduction in pain. I've had friends that have CFS and they have added naturalpathic doctors to their mix. But definitely a good Rheumy is essential.
A Warm Hello To ALL!
My name is "Hopeful." That is what I have been trying to do: remain hopeful! It's not always easy; but then, you know that, as you are here at the forum of "trials and tribulations!"
I have been ill and disabled for 22 years. I had started with CFS/CFIDS and fibromyalgia. Then...started these "autoimmune" conditions... the thyroid and then the "anti-phospholipid antibody syndrome," and on came severe osteoarthritis, and I have been taking Plaquenil for the last 4 years, trying to keep another Rheumatoid condition "at bay." Doc has said the one coming on is either: R.A., lupus, scleroderma, or something they have not yet considered. It's looking more and more like R.A. Pain! WOW! Tremendous pain! The bodily pain has been "ever increasing." I have been on prenisone , formerly high doses, now just 5mg., along with morphine at 90 mg. per day. I have also tried the many AED (Anti-epileptic drugs). I have most recently tried Lyrica. I cannot even tolerate that drug. So for pain, it's 90mg. MSContin daily (every 8 hours), along with dilaudid 2-4mg. as needed for "breakthrough" pain. I think I can stay awake that way. When something like Lyrica is added, I don't know if I can stay awake all day. Too tired! The pain is considerable. Feet, ankles, lower legs, knees, hips, ribs, shoulders, shoulders, elbows, wrists, fingers, etc. Neck and back, too! Neck and low back are both very bad! Have had fibromyalgia dx. for 20 years, along with myofascial pain syndrome, etc. Migraine headaces galore!
So... I have these acute attacks of even more pain, where I cannot walk on my feet, they are so painful, I can barely use my hands, etc., and I am in agony. I now also get "swelling" like never before! If I am out for a couple of hours with my husband, my ankles and knees have swollen and my feet are in so much pain! My leg muscles are in pain, too (ie: my thigh might be in so much pain, I am actually crouching down near the floor at a huge store, trying to massage the pain out..or something)! Must look odd!
I just do not know what to do anymore! Just keep increasing the morphine? Just keep increasing the dilaudid? Wow!
I cannot tolerate the drugs made for seizure that are also used fr pai, especially nerve pain! I have lots of small fiber neuropathy, too. (Just cano take those drugs: Lyrica, Neurontin, topamax, depakote, dilantin, tegretol, etc., etc, just cannot take them. Does anyone recall going through that "in between phase" when you did not fit a diagnosis completely, but docs knew that was what was developing? Yet, because they could not officially diagnose it, as the Plaquenil is "holding it back," they also cannot fully treat you for anything until they can officially diagnose it? A "catch-22!"
Has anyone had a similar story? Or are the stories pretty much "alike?" I do not know where i belong...with which group? Someone please tell me? Careful now! Lol!
I am ready to tell the doc: "Please strat treating me for R.A., at least. I can no longer stand the pain!
I don't like to do my intoros this way...pathetically. Yet, I KNOW you each will understand. If , for any reason you do ot understand, you are likely in denial about your own history of "quandries," which isn't a bad thing... you see, whatever it takes to remain...."hopeful!" Have a great day! Hope to hear from someone! ~~HOPEFUL~~ I We're a pretty easy going group; do't worry about it. Glad to see ya back. I didn't mean to not answer questions! I had moved along to the RA section as was suggested! I think I have answered any questions there? If not, feel free to ask! I hope I did not offend anyone by moving to the RA section without ansering here? If so, please forgive me.
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