Still's Disease

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Still's Disease
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Back Pain to the Max

Hi. I have a slew of health issues for 30+ years now, including Crohn’s, epilepsy, endometriosis, fibromyalgia, migraines, history of TIA strokes, history of reversible cerebral vasoconstriction syndrome, POTS, along with a new, undiagnosed auto immune disease that they cannot figure out yet.

Recently, I have had a series of bulging discs occur in my spine (currently at 6 with 4 compressed nerves) that they have marked as degenerative disc disease. Upon my neurosurgeon inspecting the MRIs of my spine, he said that it is autoimmune related, degenerative in nature, but that he has no idea what it is, cannot fix or help it, cannot operate on it, and cannot stop the pain.

At this point, the pain is so intense that even with an opioid patch, Norco, and a muscle relaxer, I am still shaking in pain. Does anyone else have anything of this nature? Does anyone have any idea what this might be? I know that my doctor is currently toying with the idea of Stills Disease One of my unknown diseases could be as well as the possibility of mast cell activation syndrome, being present.

Any help is much appreciated! Thank you so much.

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Chronic fatigue syndrome

My doctor said I had chronic fatigue syndrome and there is no prognosis how long it will last. But I actually think it's part of my Still's disease the fatigue I'm dealing with any thoughts


Anyone on here with #StillsDisease ?

Hey everyone, #Fibromyalgia and #Scoliosis sufferer here. At my last doctors appointment my doctor said she had concerns I might have #StillsDisease and ordered some blood tests. This morning I got them back and they seem to confirm everything the was worried about. Can anyone with the diagnosis share some of your experiences with me, symptoms, treatments and whether you’ve found them successful or not? I understand it’s an uncommon condition and I just want to get as much information as I can, especially from people who actually have it. Thank you 💜


How can I help? . . .

What would be a huge benifit for you that someone could provide online? I know it’s a vague question, but hoping for a broad range of ideas.

Here’s mine: I’d love it if someone from the community hosted a daily livestream of guided stretches at the same time every morning. I’d benifit from the personal motivation to be more active, the practice of consistency, and feeling compassion and connected with others in it.

#CheckInWithMe #52SmallThings #DistractMe #Motivation #ChronicIllness #Fibromyalgia #Loneliness #Depression #Arthritis #StillsDisease


Constantly being doubted

I feel like even though I am going on 3 years after diagnosis, people closest to me still don’t believe I have a chronic’s really starting to get to me. #StillsDisease


What experience, if any, have you all had with the various biologics/injections/treatments? #StillsDisease

I have more of the chronic, systemic form of still's and I've been in active refractory disease for over a year now. I've tried two different IL-1 blockers and neither of them even touched my symptoms. Just curious to see what kind of treatments have or haven't worked others. thanks!

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Is my condition part of what makes me… me? #CheckInWithMe

I don't think my condition changes me at the core of me If anything it has added to who I am My disease has made me stronger has taught me to never give up how to deal with a whole new set of daily challenges and not to feel sorry for myself Yes I have bad days and challenging days but in the end tomorrow is a new day with a new set of challenges and I go on I refuse to let my disease take over my life I have had to modify my life but I refuse to let it consume my whole being and my whole life It helps that I have a wonderful family and a true best friend who gets what is going on a great team of doctors and sites like #TheMighty #CreakyJoints #StillsDisease Continue to move forward and don't look back.

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