I’m 43 and have been dealing with this for 11 years.
It’s been getting worse over the past two years
It’s always there but the FLARES are just intense
I haven’t seen a dr for it since I was diagnosed I took gabapentin but it stopped working. My rheumatologist (I only seen once) basically laughed. Said it was a trash can disease ,repeatedly pushed on my inner elbow (way after it was confirmed ). He seen how much it hurt. I also felt extremely disregarded so I never went back
It is starting to be too much muscle wasting feeling with so little strength in my arms and legs I can barely walk or hold a dinner plate in my flares that seem to be coming after I do ANYTHING I think that’s because they found 4 nodules in my right lung 1 regular and 3 ground glass. I have shortness of breath irregular heart rate I went in 2 days after we thought I was having a heart issue. D Dimer test was positive but ct found no clots but the lung problems. So I have to wait 3 months to have another ct to see if there’s any changes. But I have a lot of the symptoms
But I believe that might be why I am in the height of my flares more consistently
I am ready for pain meds but I was thinking similar to you.
I only want it for the bad days. The rest is survivable. O don’t want anything more longtwrm. I also have hypothyroidism and it’s intense a lot of my health problems have similiar symptoms
I feel like I will be in a wheelchair one day with my legs and the difficulty holding them up
Sorry so long. I’m just in a place where I feel like I’ve had enough
Not depressed or anything. I have a therapist for talk therapy but I’m not emotionally down. I’m just ready for some kind of relief I guess. I used to build houses,lay sod, CNA furniture refurbished all so many things. Doing so little is more painful then the symptoms sometimes