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Frustrated

Apr 19, 2016 9:54 AM

This is my first post. I wanted to day hello. I have been diagnosed with ankylosing spondylitis and have been dealing with it for about 14 years. I'm getting very tired of going to doctor after doctor with no pain relief and no closer to a solution to the problem.

Apr 19, 2016 10:28 AM

Dleigh,

If the find a cure on what causes the spurs and stones in the muscles, we both and many others will shout for joy. All the docs can say to me is it is inflammation and they do not know the root of it.

Feel you hang in there, try to move some everyday. I know it hurts but better than being frozen in that position for life.

Apr 19, 2016 4:29 PM

Are you taking anything like Humera?where do you feel the pain the most?

Apr 19, 2016 4:42 PM

The doctor is trying to get my insurance to cover humira right now. They have denied it 3 times now. I have severe pain in my lower back/hips/buttocks area. A normal day for me is at a level 4/5 - that isn't even close to a bad day. I've been this way for over 10 years. There's nothing that bothers me more than when the doctors don't listen to how I tell them my body feels! It is so hard to keep moving forward sometimes, but giving up isn't an option in my world!

Apr 19, 2016 5:28 PM

Hmm,well there are other biologics out there.. In the meantime have you had a dose of prednisone lately? How did "they" arrive at this diagnosis? It is a difficult one to finally arrive at... Mainly because it mimics other disease processes. My mother has this in her thoracic/lumbar area rib cage.

Apr 19, 2016 5:36 PM

I've been to several doctors, the pain clinic, and now the Rheumatologist. A doctor's at the pain clinic thought it was/is AS, then the first (yes, 1st as where I live in MI they don't stay after their residency) Rheumatologist "officially" diagnosed me with AS. The new Rheumatologist now says it is sacroiliac (something, sorry I didn't understand the second part) a form of AS that doesn't appear in the blood tests. I'm very scared of the humira (if by some miracle they do finally approve it) as the sulfazine caused my throat and tongue to extremely swell, among other things. I've had the nerve blocking shots a few times, is that the prednisone?

Apr 19, 2016 5:41 PM

I'm honestly not sure if I believe the doctors really know what's wrong. I've had so many tests and most come back normal. I do have regular arthritis in my hips. The doctor I had that I loved I lost due to an insurance chance said my sacrum rotated backwards and caused my pain. No answers + extreme chronic pain really puts even the strongest person to the test! Oh and thx for the replies!

Apr 19, 2016 6:14 PM

Sometimes when I am inflammed, I will call it a flare...but not like my Fibromyalgia friends.. A short couple of days of low dose prednisone will kick it for me. Lower the inflammation and reducing pain and associated muscle spasms. So with this allergy to sulfa , you are telling the doctors that you have anaphylaxis type of side effects, right? Make sure you carry a current med list and allergies list with you in your wallet , put one in your glove compartment of your card as well. Just to be safe. So , when I am having my flares, I use ice packs and Voltaren Gel....and lots and lots of whining! Hope any of this info helps. Love and blessings, Terri

Apr 19, 2016 6:35 PM

Thank you so much! Best wishes to you as well!

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