UGH! Sorry for all those diagnosis'. I am frustrated and confused and a little bit angry.
I won my Social Security Disability last year after many years of trying and won it based upon my DDD, severe arthritis in knees and elsewhere, bulging discs ect, ect I won't go into right now.
Once on Medicare, I've had a heck of a time finding a doctor. I was goihg to a clinin before and couldn't wait to get some REAL medical care and pain relief. Once I found one, I really liked her until she added another diagnosis... polymyalgia rheumatica.
I have severe pain in my left shoulder, left arm neck and upper back which formerly was diagnosed as from the bulging discs in my cervical spine, severe pain in my low back, hips, which has for YEARS been said to be a direct result of arthritis in my lumbar spine and 4 bulging discs there.
First she puts me on high dose Vitamin D...saying I was low in that. That did not get rid of my pain. Next... 10 mg Prednisone per day I guess thinking that would eliminate my pain from what she says is polymyalgia rheumatica. It not only didn't totally eliminate my pain, but kept me awake at night, jittery during the day.
I quit taking it because I have spent many years being obese, had just lost over 40 pounds at the time she put me on Prednisone and do NOT plan on gaining back the 55 pound total I have lost so far. I have tons more energy, can move around better, look good, feel good.
My main problem is my pain still. When I was going to the clinic, I was given Flexeril for the muscle spasms in my back and legs, hydrocodone for the pain and Lodine for the inflammation.
With this doctor, she acts as though the Prednisone is a magic pill that will make all my problems go away. I swear to God I will not take it. So I live in pain and taking 3-4 ibuprofins at the time for the last year. Its all I can do.
I feel very limited as to doctor choices. Most say they are not taking any more Medicare patients. This is nuts. I win my SSDI based on years of disability only to go on Medicare and not be able to have choices of doctors.
She did run a lot of blood tests.
Rheumatoid factor was normal, but CRP was very high, sed rate elevated. She didn't tell me the values. She said she was confused by the results. Asked me some questions.
On telling her that my pain goes away somewhat each time I have taken a course of prednisone, she said that was a sign of polymyalgia rheumatica!
ok... every single time I have had a severe incident with my back I was given one of those gradually reducing packs of Prednisone. And I've been given it when I've been in pain from shoulder, back and sciatica. Once the pack is used up within days, the pain is back, though not as severe immediately. Over time it comes back full force.
I feel like I am getting jerked around. As if they all want the Prednisone to be my magic cure. Well, I won't go for it. I know the dangers of it and the side effects are far, far worse than any other pills they can prescribe for my pain.
So what am I to do? Live with the pain, the inability to move about at times?
I am so angry about all of it. Yes, losing the weight has helped, but not as much as I thought it would have. I see now that losing the weight will make my life way, way better, but its not going to eliminate my pain.
Suggestions please! I feel I need a doctor who will treat my symtoms, help me live a more active full life and not just try to sweep my health issues under the rug of Prednisone.
On Medicare, can I just call a rheumatologist on my own and go see them? Will they put me on Prednisone???
I am sorry, I can relate. I am currently looking for rheumatologist for my joint/muscle pain. I suspect I have RA, which my sister has and my grandmother had. I'm not looking forward to the meds, esp. since I have heart/blood pressure issues also.
I took prednisone once for hives that were horrible, and I hated it. I am about 30 lbs. overweight, and I put on another 5 in a week, my face looked like a balloon. There has to be something else!
Hi! Sorry for your suffering. I can relate, but not to the extent you have had. Just wondering....since there are so many other Anti-inflammatoies out there, why aren't they trying another kind? Ibuprofen didn't work for me. Naprosyn worked years ago for neck pain I had before I had the Cervicle fusion, but later when I started having more severe knee problems, it didn't work at all. I've been on Indocin for a few years now. It did make a noticible difference in the beginning. I can't tell now as my joint degeneration has progressed a great deal and I'm affraid to stop taking it to find out how I'd be without it. Especially since it takes several days to build up the blood level again.
Okay....don't laugh, but I do have another thing to suggest for a some relief that is temporary, but it has been my saving grace in my worst periods.
Have you tried getting in some water? I don't mean high test water aerobics but just floating around in a pool? There are only so many hot baths a person can take in a day, and getting in and out of the tub is an ordeal I am not up to anymore, but getting into a large pool that allows you to just float around a bit and move the joints has helped me a great deal. Since it is winter, I would try to find an indoor pool that may have programs for Arthritis sufferers. If you get a PT referral you may be able to get some financial help through insurance to pay for any cost involved.
Hope this was helpful!
I agree with the warm water workout. I have coped for yrs with degenerative discs, surgeries, RA, prednisone now polymyalgia RA. Am fortunate to have a senior pool available to me and just walking in the more shallow end is very helpful. Does it eliminate pain, No! But it does help keep the muscles stronger which helps lessen the discomfort etc. My motto is 'its no longer easy being me', but I'll do whatever it takes to stay off meds as long as possible. Recognizing the difference between PAIN and discomfort helps. Keep busy and moving helps with discomfort. hugs to all