Joint pain is listed as a symptom of mast cell disease and both mastocytosis and MCAS patients complain of generalized joint pain.
I definitely have a lot of joint pain myself and feel like an arthritic 80 year old when it’s really bad. My fingers, toes, elbows, knees and everywhere else ache and makes me feel blah at best. But I also have a much worse hip problem that is very debilitating and is most definitely connected to my MCAS flares. In fact, starting about 4 years ago the pain in my hip which radiates up into my ribs and back and down to my knee was so bad that I was having to use a cane off and on and was almost completely bedridden by the time I saw my immunologist. At just over 40 years old!
It was really, really bad and it came on shockingly fast when I look back.
Luckily it hasn’t been bad like that in a long while now and to be honest I almost forget what it felt like living in such agony just to walk! It will come back though if I’m not careful so I’m a little anxious now that I’ve lowered my maintenance doses in anticipation of switching to compounded next month.
It’s not just me with this MCAS/hip issue, either. My older brother (who is permanently disabled and bedridden at 53) was extremely fit and healthy (well, you know, appeared to be) before his rather sudden downfall at about my age and it began with him limping and using a cane. He had a bad hip. I’ve chatted with a few others now with MCAD who also live with chronic, debilitating hip pain which flares badly whenever they degranulate and with all of us it seems it is typically concentrated in one hip (mine is my left). It will flare up my right hip, too, when it’s really, really bad and when it does I can not walk without help.
For awhile I thought it might be directly related to the left-side diverticular problems I have but now I believe it is just triggered by the mast cell degranulation in general which also happens to trigger my gut (and everywhere else) to sometimes inflame at the same time. So it’s a correlation without causation thing, it seems.
Why do our joints, including our hips, have to hurt so badly? Is it just inflammation? Mediators wreaking havoc? Bone loss? What the heck is going on in our hips? I found this from the World Allergy Organization:
A recent cross sectional comprehensive survey of over 400 patients with Mastocytosis done under The Mastocytosis Society based in the USA indicated that the symptoms most commonly associated with the disease included anxiety, flushing, itching, fatigue, brain fog, stomach pain, diarrhea, headaches, joint pain, lightheadedness and syncope. These symptoms were not correlated with mast cell mediator levels and cannot be attributed to a single mediator but were critical in decreasing the quality of life of these patients.
I had a bone density scan and a full skeletal scan done and my bones are fine. I have always had a little bit of a twist inward to my left leg (maybe my brother did, too?) though and was told I probably have bursitis in my hip (duh).
That’s inflammation for us laymen.
That’s the thing, though, as a kid I had tons of them and now as an adult I have a lot of things ending with “-itis” and “-osis”, and I seem to acquire more each year that my mast cell disease progresses. Hmmm!
Now that I know that my mast cell dysfunction is probably the root of the problem and probably directly responsible for putting my organs, tissues and systems into “-itis”and “-osis” states I feel like I at least finally (!) have something to go after with tenacity, like a lioness hunting her prey (aww).
Anyway, I would really love more than just a day or three of “non-itis” and “non-osis” living and I can’t wait for my NeuroProtek to get here now.