Daylilly
New member
- Joined
- Feb 9, 2017
- Messages
- 7
- Reason
- DX FIBRO
- Diagnosis
- 00/0000
- Country
- CA
- State
- ON
Good day everyone. I am new. I am glad you are all here.....because I don't know how to do this:-|
I have a crazy body...I deal with allot of immune issues. Hypothyroid, Addison's, Sjogren's, Systemic Lupus, IgA deficiency and low blood platelets/ITP.
I have balanced life and meds for a long long time and did pretty darn good. Last year my immune system attacked my blood and my platelets dropped to zero. So I had to do a year of high dose prednisone, 80mg, it was hideous, only it didn't work so I ended up having to do chemo, Rituxan. A rough rough year. The ITP is in check now for a while I hope but I ended up with this horrible chronic pain and fatigue. I had been told I had fibro years ago but it never really got me down so I kind of shrugged it off. But since the Rituxan, there is no shrugging this pain. I again have been told by my rheumy that this!
I have tried lots of rest, hot baths, Tylenol, Tylenol3, Meloxicam an anti-inflammatory, then was given lyrica. The lyrica only works as long as I am taking it so not really making it go away plus it causes weights gain so bad. So I have decided to go back to the prednisone. I have to take 7.5 daily anyway so I added an extra 5mg which my rheumey said was okay. It works best to just make it disappear but I wonder how long I will have to take the higher dose to get things to stop.
My symptoms are widespread soft tissue pain, weakness, terrible fatigue, my fingers and wrists just ache as well as my shoulders and the bottoms of my feet. I also feel pretty daft, kind of spacey, but that might be the lyrica. So as I said I just don't know how to do this, to live, I can't get anything done and don't even want to try. I end up with terrible face pain and headaches.
So what can you folks tell me? Is this forever or is it like lupus which flares then will eventually settle? Thanks, it's been going on since the end of January, and I just agreed to take it easy until things settled only it hasn't, and I am starting to get terrible fed up, scared, sad, miserable.....etc thanks so much Daylilly
I have a crazy body...I deal with allot of immune issues. Hypothyroid, Addison's, Sjogren's, Systemic Lupus, IgA deficiency and low blood platelets/ITP.
I have balanced life and meds for a long long time and did pretty darn good. Last year my immune system attacked my blood and my platelets dropped to zero. So I had to do a year of high dose prednisone, 80mg, it was hideous, only it didn't work so I ended up having to do chemo, Rituxan. A rough rough year. The ITP is in check now for a while I hope but I ended up with this horrible chronic pain and fatigue. I had been told I had fibro years ago but it never really got me down so I kind of shrugged it off. But since the Rituxan, there is no shrugging this pain. I again have been told by my rheumy that this!
I have tried lots of rest, hot baths, Tylenol, Tylenol3, Meloxicam an anti-inflammatory, then was given lyrica. The lyrica only works as long as I am taking it so not really making it go away plus it causes weights gain so bad. So I have decided to go back to the prednisone. I have to take 7.5 daily anyway so I added an extra 5mg which my rheumey said was okay. It works best to just make it disappear but I wonder how long I will have to take the higher dose to get things to stop.
My symptoms are widespread soft tissue pain, weakness, terrible fatigue, my fingers and wrists just ache as well as my shoulders and the bottoms of my feet. I also feel pretty daft, kind of spacey, but that might be the lyrica. So as I said I just don't know how to do this, to live, I can't get anything done and don't even want to try. I end up with terrible face pain and headaches.
So what can you folks tell me? Is this forever or is it like lupus which flares then will eventually settle? Thanks, it's been going on since the end of January, and I just agreed to take it easy until things settled only it hasn't, and I am starting to get terrible fed up, scared, sad, miserable.....etc thanks so much Daylilly