I also get that nasty feeling like I have flu .not that it ever is ,just horrid
Is that any different from "The Ache", or what is the difference?
Stretching does help some, but too much stretching, sitting, walking, standing causes more pain in the end for me. I'm 57 and in the last 4 years I've been diagnosed first with PBC, then Sjogrens and Fybromyalgia. I'm taking Urso for the PBC (which has kept me from getting any liver damage to date), Hydroxychloriquin and Gabapentin for pain. I have read that Sjogrens can have symptoms of muscle/joint pain, I don't know that though for sure. I have chronic pain in my shoulders, upper arms, elbows, wrists, thumbs, hips, sometimes my lower back, sometimes my knees. I also experience stiffness with the pain and stiffness in my fingers. I use a pillow between my legs to keep my knees, hips and lower back from aching at night, but ultimately I have to change positions several times during the night. The times where the pain is amplified, I feel, is if I overdue things or I'm stressed out over something and oddly enough if I eat too much sugar or drink more than two or three cocktails. This is when I feel very tired as well. I'm thinking this may be what others refer to as "flares"? I would love to try some of the supplements that people say help them, but with PBC, I have to be very careful about what I take, same with OTC pain killers. I can take one Aleve tablet per day when I'm having a bad day, no Tylenol, Excedrine, Advil, anything with acetiminiphin (spell?).
So is this the way my life is going to be until the end? Will it get worse? Will it get better?
Hi MNGal, and welcome!
Yep, too much of any activity or action, it all needs to be paced.
Yep, many Sjögren's symptoms are similar, so a
certain, whoops: center for rare diseases suggested my FM may be Sjögren's, considering I also have pretty dry mouth; however nothing in the salivary glands.
The seeming joint pain in FM is however actually tendinitis/tendonitis, the tendon insertions above and below the joints. Joints'd be something else.
Changing positions several times a night is 'normal', I even have to get up and move, sometimes shower.
Amplified pain is a main feature of flares, = amplified symptoms, so is a relative term. E.g. I'm in a continual flare, but can have additional flares inside of that if I overdo it or under-/overdo
se supps. Of course sugar and alcohol are major triggers for flares, most will agree.
With PBC I'd think most supps'd agree much better than any pain killers, esp. mid to long term. How would you find out which supps are OK? I can't remember any of mine having a liver warning, at most very few.
Your life from now on will be a somewhat new one, but it can be a good one. It will get worse if you let it & other things, plus age. It can get better if you follow
@sunkacola's advice post pinned at the top of the forum, can afford to pace well and spend time & energy on learning how to manage it by symptom tracking, trigger hunting to prevent, finding food & supps that alleviate, don't trigger.... ;-) Good luck
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