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I'm currently being treated with lidocaine patches and increased mito cocktail but they seem to be progressing.
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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I came at this backwards, I had diagnoses of POTS, SIBO, Histamine/MCAS issues before seeing Rheumatology and the awareness/treatment of these helped me a great deal. All that was left for Rheumatology to do was suggest some hydrotheraphy/physiotherapy, which helps a little.have the doctors been helpful since you have gotten this diagnosis?
Yes, I was told this is quite common in the hypermobile, as well as 'flares' where the crepitus (cracking joints) can become much worse temporarily.Also my spine hurts and makes snapping, rubber band kind of noises. Many of my joints do actually, loud cracking and snapping noises. Do you experience similar?
I'm glad that a chiropractor was able to help. How long did it take to get them back in place?A chiropractor was able to get my ribs back to where they belonged using an Activator.
See https://en.wikipedia.org/wiki/Activator_technique
It wasn't all easy going, but it worked. Alternating heat and cold after treatments helped, along with some Flexeril. My chiropractor also noticed that my spine was more flexible and easier to adjust with traditional adjustments after I started taking spironolactone for fibromyalgia. It could take two weeks or more to feel the benefits of spironolactone.
Twice weekly visits for about 3 months, then once a week for 3 more months. This was about 25 years ago, so my estimate could be off. I think this is also a good estimate of what a chiropractor might tell you to expect.I'm glad that a chiropractor was able to help. How long did it take to get them back in place?
That's one reason why many EDS'ers can fall between the cracks, some people can have very stiff joints instead of being hypermobile and just get fobbed off. There would usually be some evidence of EDS popping up somewhere along the line within your family line though.I haven't been evaluated for it yet but my Dr suspects that this isn't EDS. Do you know if you can have a subtle case through life that dramatically worsens as you age?
Again, a very common combination with EDS.Do any of you know if Mast cell activation syndrome can play into the joint laxity?