What causes the pain? | Arthritis Information

 

Here's a question for everyone - what actually causes the pain we feel with PMR?

I've been dealing with all the classic shoulder, hip, and hand soreness and stiffness for over two years now, and I've seen lots of doctors.  They all agree  that the PMR is an auto-immune disease, and that the pain and stiffness are the major symptoms.   Most say that the only thing the prednisone does is help relieve the symptoms - it doesn't "fix" anything or prevent any actual damage.

But none of my doctors seems to be able to explain exactly what it is that my immune system is attacking, or why that attack causes this pain in these places, or why it seems to be worse at particular times or when I am just sitting or lying still in one place.

Has anyone ever gotten an explanation of just what's really happening physiologically?
inflammation.....the high sed rate and crp indicate inflammation. That is why i take the fish oils, ginger, tumeric, etc....I have looked at doctor's pages on google with all the cellular stuff i cant really understand. But the thing that gets me is what is the trigger that starts this off. I have wondered about fungus. Some say a virus. yes, i have wondered that also..........in some of my googles, it just says stiffness, ha, baloney, i have pain, major pain, until it wears it self down with the day. auto immune, well, i think it is the onset of some real big stress, that you can't control, or fix. i am 75 and have never had a pain in my life until this, and it came on with a nasty divorce and all that entails, so i blame it on that, but after the stress, you would think it would go away, wouldn't you.

I have spent HOURS reading about PMR and in hundreds of articles only two On this site in previous postings  - scroll down - Look at Marijke Foundation Netherlands,

 International Survey and National Medical Research Foundation both located in the USA.

All working to try and find Cause and Cure  - currently there is none and unless we patients get cracking and do something about it - there never will be  - as in some medical places its called an 'orphan disease'.     Vascular and Inflammatory, like the body attacking itself who knows?

And the UK - busy setting up a National Organisation called PMR-GCA UK.   Aims, Support, Self-Help, Research and to heighten awareness.   Current estimates are that as the 'baby boomers' hit the 60's onwards - could be up to 500,000 new patients in the USA alone.

mrs UK
Meant to say also, that if prednisolone is a no no - there is a new (well about 5 years old) one called Methotextrate  (chemo based) might be worth exploring.

mrs UK
My doctor believes that I got this as a result of a bad pnumonia I had last year. ...  I think I have had some of the symptoms off and on for the past several years and it is now WIDE OPEN....  She is sending me to a nuerologist to rule out some nerve condition because the pred is doing enough.... I don't know what causes it,  but I would gladly give it back. As a fr'instance:  I got PMR 3 years ago at age 55.  Before diagnosis, it was extremely debilitating: felt like I had broken glass in my hip joints, couldn't bend to put on socks or wash my feet in the shower, had to use my hands to help lift my legs in and out of the car, took several seconds to straighten up after getting out of a chair, ordeal to turn over in bed, etc.  I was worried I would have to give up my farm.  Fortunately, I was diagnosed and put on prednisone within weeks and it was like a miracle - back to my old self, even more energy! My story is a mirror to Ruth's but throw in some bad depression and a lot of tears trying to take a shower or to generally just move.  It took 2 years before I changed Drs. and was finally dxd and another year on pred.  She felt I had it for a few years more than 3.  I was at 7.5 mgs when I woke up at 4 am one morning having the shakes and freezing cold (in June) and within 3 days I knew that poly was gone.  I had 3 glorious pain free weeks before fibromyalgia set in. TeedOff2009-02-20 22:11:42What kind of med do you all take for the pain. I can't take the Pred so I am in ALOT of pain. I tried one 500mg of hydrocodone today and it worked pretty good, but it doesn't have any anti-inflam in it. I also have tried tramadol. One tram doesn't do anything, two takes away the pain, but gives me unbearable cotton mouth!! What pain med do you all use, if any?? The only thing I took was the pred.  It took care of the pain and I would adjust accordingly.  Have you tried to get another Dr. yet?  You really should get one as soon as possible.  As I stated before...some Drs. are trying plaquinil.  I do not know how well it works.  This has got to be very distressing for you. Thank you, it is distressing. The disease itself is a monster, and then to have to try to convince your Doctors to open their eyes is exhausting. I'm calling a friend next week in another city. He is a Doctor and very nice. I will ask about plaquinil and also low dose naltrexone. the LDN has been used favorably in several auto-immune diseases. I very quickly checked the other poly board and by the looks of it the plaquenil is not working for the people that are on it and the side effects are just as bad as the pred.  Your best bet is to wait until you see the new Dr. and take the study you have and show him.  If he doesn't have time to read it just leave it for him to read later. Pat, I'm so glad to hear someone else had joint dislocations. I was wondering if that was a separate problem and I don't need any other problems!!
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