I've Been Reading and Now Writing
Im pushing 60 yrs and after many ongoing surgeries starting back in 2007, I have lived with joint pain for years.
At first, it was diagnosed as Fibro. then DISH. I went to Mayo Clinic... after an unsuccessful neck surgery leaving my vocal cords damaged and having incredible back pain.
They thought they saw a brain tumor on my brain stem and no...nothing there. I told them of unrelenting pain and I was dismissed as "you dont make a good surgical candidate, no brain tumor, and come to our facility in MN for rehab living with pain. Oh yeah, Mayo said I didn't have DISH.
Closing my business for pain
New to me, my first pain management doctor ( I met at Mayo) I went on Cymbalta, Voltaren, and Docolfinac, I had been injected for blocks and burning nerve endings. Then on to opioid. I had a thriving business and had to close because of pain.
I decided to move to NY in hopes of better treatment options then the Tampa Bay Area. Once there, the surgeries snowballed from blown-out nerves in my feet, incredible pain in my hips, my back, and my neck.
I became disabled. I had 6 major surgeries in 3 years. One doctor actually sent me to the psych ward. I went there with a boot on my foot and my arm in a sling... and I was crazy?
A family friend told me about Andrews Sports Clinic in Pensacola. I didn't think much especially because "Sports Clinics" are everywhere. So I moved and began my first appointments with a variety of ortho doctors.
I didn't get very far before my sciatica pain was debilitating. This is how I met Dr. G. We went through many injections and ablations.
My hips felt like I had scuffed my insides... the same feeling a kid gets when they scrape their knee on the pavement. Such burning! Dr. M at Andrews began hip injections and 6 months later hip surgery removed the burser.
Imaging test for AS
Easter of 2019 my heels were inflamed. Having plantar fasciitis didn't fit. My head was killing me, neck, heels, spine, and I had developed what was diagnosed and thoracic outlet syndrome. Now that symptom comes and goes and no I do not have TOS.
I could not believe what was going on. I had lived a very active life but nothing outlandish.
The same day I went to Dr G about the heel pain, he was looking at a lung Xray when he noted that my spine was bambooing. I then went through xrays, MRIs, and blood work. The blood work showed nothing.
Dr. G referred me over to a rheumatologist. Together we went through a series of meds like Humira Simponi, Cimizia, and now onto Cosentyx. I take 1200 of Gabapentin, Tizanidine, and Amitriptyline.
Temporary relief for my flare ups
The only thing that stops the flare-ups is when I have been given steroid packs but the steroid gives me insomnia. For about 6 months I've been taking 10mgs of prednisone daily and that seemed to help until the side effects of weight gain and hair loss I could not tolerate.
Currently, I have backed down to 5mg and feel like crap. So much pain.
My rheumatologist left the area, my new rheumatologist does not believe I have As put instead its mechanical or DISH? Here we go again.
Since 9/2019 to date, I have had a total of over 25 procedures of blocks and ablations. I get such temporary relief....
Suggestions from the communitiy?
A few things I've read on this site are females with a history of diarrhea, I can check that box ...since I was a child and I have had this problem constantly. Endometriosis...I suffered from that for many years until the initivable.
I now can think back to my college years when the back pain started. Nothing is working for me. Im in terrible pain. Does anyone have suggestions or a med they found that worked?
Here's to pain free days
How long was your longest flare?