Hi Dugrab. I was in a great deal of pain up to diagnosis, nothing helped. As soon as I was diagnosed and started taking prednisone the pain went. I finished my steriod taper in December 2013, I have remained well and the pain has not returned. Do be careful with taking anti inflammatories like Ibrufen and otheres, the research shows they can do lots of damage to kidneys. Best to check with your family doctor who will have your full medical history and be able to advise which is the most effective painkiller for you without further damage to your organs. Autumm

Thanks for the input autumm. Are none of you in constant pain? Mine is alot of joint pain and general constant discomfort no matter how I sit, laydown and pad my seats and bed. I have read alot about how ibuf raises blood pressure and effects other drugs I take. The other option my Doc gave me was acetaminophen, which I think is worse than ibuf wrt side effects and damage. Im told that 200mg ibuf in morn and at night isnt that much... Sometimes my Doc gives me a high dose prednisone shot and it does help, but only for a while...

Noone else here is in pain?

Hi dugrab, Pain management is a big issue. Autumn covered the pain issue very well.

I would never take any medication, vitamin, supplement etc.. without a discussion with my doctor. Kidney and liver issues require watching dosage amounts and which medications to avoid. It is also important to avoid drug interactions with other meds.

We all get surprise aches and pains too. Discuss with the doctor the correct meds and how to deal with pain as things occur.

Best Wishes

I have been on Gabapentin 2700 mg, tramadol 100-200 mg per day and Cymbalta for the constant pain. I also take a calcium blocker which may help. I also have been diagnosed with Neuromyotonia and small nerve fiber neuropathy. I also have degenerative disc disease. just started going to a pain clinic 3 weeks ago. a pain patch was added. Believe it or not I have been on these meds over a year with no side effects. always felt tired and have short term memory problems but that was before meds. I am able to function. without them I would be a mess. Did not want to go on and have stayed away from oxycodone.dont want to be out of it. All of these conditions are Idiopathic. No know cause. I found out that there are approximately 9 people {that I know of} with Polymyosytis who responded to 9/11. It extremely hard to find information . I suspect Toxins are responsible for the problems I am having. Sorry about the long response and getting off the subject but I was on the run , for a while there. LOL I don't know whats causing what or if all these diagnoses are correct. sick of going to doctors and test.. sick of pain after taking all these meds. but im functional now. have to put up with some pain that's all.

Jlnypd thanks so much for the comment. I am on a calcium blocker aswell, nifedipine, which is for my hypertension as well. Not sure how effective it is cause my calcinosis continues to be a problem. Thanks for listing some drugs for me to look into. I was diaged 2005 and sometimes it feels my doc isnt giving or helping as much as he used to. I do resist alot cause all this is just to overwhelming and the prednisone effects on my head (mental/mood) can be hard to deal with. All the drugs just feel like I am poisoning myself. So I feel he gives up. But it might just be my messed up head. Seems feb/mar each year is a huge struggle for me.

Wrt 9/11 and toxins... I swear that I got bit while running in the woods a couple weeks before going to the ER for what turned out to be DM. Dunno what bit me in the leg but I also feel the toxin caused the DM. Never found evidence of lymes or anything.

You comments were very helpful to read.

Hi Dugrab. You are moving back near your parents. This move may be a good time to review your Meds and to maybe visit a new Rheumatologist who may be able to give you more help to move on a little. Best wishes. Autumm

Autumm

I agree and that was part of the plan. Thanks for the suggestion :). I was making some progess recently but a flare has put a stop to that :(.

Hi Dugrab. So sorry about the flare. Let us hope your new docs can do better. Autumm

I have pain every day just to different degrees. I was told not to take ibuprofen due to the meds I take but that Tylenol was okay. I take 2.5 mg hydrocodone when needed which is most days.