Chronic Pain Support Group
Physicians and professionalsdefine pain as chronic if it lasts longer than three to six months and is persistent. It's distinct from acute pain that is a direct result of injury or trauma. This support group is dedicated to those suffering from chronic pain. Discuss treatments that have worked for you, find advice for your specific experience, and find support. You're not...
.......I keep hearin' about how vague I am about my condition/s.....
Like many of you...I could write a dang book...if I could write a damn page :-) :-) :-)
Already known....DDD...blown cervical discs...post-fusions pain...stenosis......all the usual spine stuff...
Recurrent shingles with Post neuralgia in multiple areas...
Sometimes without rash...so, potentially RSD......and how do they differentiate?........ they don't
Recurrent, severe, and almost unstoppable muscle spasms as a result of negative reaction to SCS implant test....
Pain ......just about everywhere at different times...muscular, skeletal, neuralgic.........well...many of you know yourselves......
My " flares include inability to keep food ( and sometimes even meds) down........fevers that can only be brought down to around 101 with tylenol, anti-virals and antibiotics.........and intensified pain....
Complications from malnutrition....
OK....that covers a lot of it........as y'all can see........just like many here.
Yesterday....FINALLY.....Immunologist Dxed auttoimmune disease........
And, yes/no....that's still non-specific....there are 80 to 100 something auttoimmune diseases.............
But....it's a Dx...and, I'll take it.....
Continuing prednisone for a month...then adding plaquinil.....as long as heart stress test doesn't contradict that treatment....
My Immuno doc said yesterday it had been kinda risky for him to start the prednisone without a difinitive dx......but...the reaction to the prednisone confirms dx........man, am I lucky to have a doc willing to go outside the box.....
He said he just wasn't willing to keep watching me die any more.
See....this is one loooong, boring story that we hear always here.....
Hope I was clearer about my issues.........
I GOT A DX!!!!!!!!!!!!!!!!!!!!!
Hugs...jc
Like many of you...I could write a dang book...if I could write a damn page :-) :-) :-)
Already known....DDD...blown cervical discs...post-fusions pain...stenosis......all the usual spine stuff...
Recurrent shingles with Post neuralgia in multiple areas...
Sometimes without rash...so, potentially RSD......and how do they differentiate?........ they don't
Recurrent, severe, and almost unstoppable muscle spasms as a result of negative reaction to SCS implant test....
Pain ......just about everywhere at different times...muscular, skeletal, neuralgic.........well...many of you know yourselves......
My " flares include inability to keep food ( and sometimes even meds) down........fevers that can only be brought down to around 101 with tylenol, anti-virals and antibiotics.........and intensified pain....
Complications from malnutrition....
OK....that covers a lot of it........as y'all can see........just like many here.
Yesterday....FINALLY.....Immunologist Dxed auttoimmune disease........
And, yes/no....that's still non-specific....there are 80 to 100 something auttoimmune diseases.............
But....it's a Dx...and, I'll take it.....
Continuing prednisone for a month...then adding plaquinil.....as long as heart stress test doesn't contradict that treatment....
My Immuno doc said yesterday it had been kinda risky for him to start the prednisone without a difinitive dx......but...the reaction to the prednisone confirms dx........man, am I lucky to have a doc willing to go outside the box.....
He said he just wasn't willing to keep watching me die any more.
See....this is one loooong, boring story that we hear always here.....
Hope I was clearer about my issues.........
I GOT A DX!!!!!!!!!!!!!!!!!!!!!
Hugs...jc
Hug...jc
Anyway, you are one step closer to getting the answers we all desperately want and the treatment and pain relief we all desperately need.
You are in my thoughts and prayers.
Cindy
I was diagnosed with an autoimmune disorder too but now have to go through the many tests to find out what I have.
I go to my first apt with a Rhumy soon and hopefully start to get some answers but my PCP did very many tests and the ANA blood test was VERY high and she is thinking lupus also but don't really know much more then that.
We will have to keep in touch while our docs figure out what we have. Cindi
Yeh...my PM doc is insisting on a rheumatologist, too...so, guess I'll have to go that route as well, since she I the BOSS....
But I'd be just as happy to stick only with my Immunologist...he pretty much saved me when I was starving with his outside-the box thinking.....a whole other story...
First Cindy..thanks for prayers...
Second Cindy..yep..we'll have to compare notes as our journeys continue...and good luck with yours, too.
Huhs...jc
Massive hugs and we're here anytime for you xxxx
Good luck on prednisone -I've been on it for 16 years. And I was on Plaquenil for 13 years. Both are good drugs but be careful with the doses of prednisone- the higher the dose the worse the side effects are. And I've had many- osteoporosis, catarracts, weight gain, pulmonary emboli. Just a few.
I did well with Plaquenil- had some nausea in the beginning but that cleared up. No other side effects.
Do get your eyes checked every 6 months or whenever the doctor wants you to - some docs say yearly- Important to keep watch for changes from Plaquenil.
Good luck!
Sandy
I take an anti viral drug for the EM every day. I will have to be on it forever. The virus will lay dormant in your body. I sure hope u get a dx soon!
Xoxo
Proud of n love ya my friend...... xoxox
Sandy, thanks for sharing your experience with the meds...it's always helpful t hear what others have felt about a treatment you're starting...
MLC.....I'm very interested in this virus you mentioned, and plan to research it....I have been on an anti-viral as often as not for three yrs. As well.....do they assume it was caused by the autoimmune disorder?... As is the case with recurrent shingles? I'm really interested to find out the differences between your virus and recurrent shingles...if any........thank you...
Seek....don't walk with your toes crossed, my friend...
Thank you all for sharing your experiences and for your wonderful support...
Hugs...jc
out of my rheumy's mouth.
As Sandy said, get your eyes checked every 6 months without fail while on plaquenil...
You know how I feel about you...dear friend....I am glad the jury came back but hate like hell what they came back with...
xoxo
Mel