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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
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I understand about that also, like so many, the changes this all brings. I haven't been diagnosed with fibromyalgia yet, but have multiple other painful conditions, including spinal arthritis that has fused some of my lumbar vertebrae together. Working hard was my everything. And the last 5 years, conditions progressively worsening, my pain and overall well being. I attend therapy once a month. And I am still trying to find the "right" doctor for all of this. You wouldn't believe the amounts and different medications that I've tried, and been afraid to try just this past 2 years. That is what brought me here to do some research, be my own cheerleader. I'm on a waiting list for hydrotherapy, so far waiting 7 months...
Like you wrote, being able to do so little physically adds to the pain even more. I think I picked up my sweet grandbaby 2 days ago, most likely for the last time. I lifted her up above my head, and her beautiful smile just made my day. But I've paid for that moment, most painfully. My spine just feels painfully inflamed. Pretzels. That's my code word for, all the bad words I want to say. I feel like all of this is progressing faster than it should be. I cried last night thinking about not being able to drive, and help my family out as I have been doing. It's a hard moment to accept. But know many others struggle more than I, I am grateful for where I am and what I have today. For the life I've gotten to experience so far.
You are not alone. We are not alone. I am not alone in all of this. Hope for a better quality of life is still there. It just has to be "built under different specifications", with love and self-care. Patience and understanding. Seeing the future as a new path to experience. I never thought I'd be reaching out seeking answers away from where I live, nearly 15 minutes from a top medical research university, but here I am. Hoping Mayo Clinic, and this support info group can be a light in the cloudiness of these times. No one understands our conditions/pains better than ourselves. We most definitely are not alone. I cannot live my life anymore, in the shadows of this misery, without connection and understanding from fellow others. Peace and pain free days be with you, everyone who reads this.