As you probably know, I’ve been struggling with some serious back pain and problems since October. Using this pain scale, I have been at an eight since October. Sometimes I get lucky and might drop to a six, but that is extremely rare. It all started so suddenly, that my physical therapist – I’m in constant physical therapy to help keep my body functional despite my health problems – got quite concerned. She thought it would be a good idea if I went to an orthopedist.
Over the last several weeks, I have been dealing with the first massive complication from my joint hypermobility syndrome (JHS) that I’ve ever had… At least, that’s what we think it is as of right now. If you’ve been following me on Instagram, then you know what’s been going on. If not, let me fill you in now:
I’ve had several vertebrae in my back dislocating. Yes, several. My pelvis has also been trying to dislocate in several places, and my SI joints have been severely dysfunctional (dislocating and getting jammed). I also subluxed – partially dislocate, but it pops back into place by itself – my left hip the other day. Obviously, I’ve been in pretty severe pain for a few weeks.
New brace and a little hope for some relief 😊 Good news is that my x-rays were clean! #jointhypermobilitysyndrome #jointpain #cmcbrace #carpalmetacarpalbrace #bracelife #eds #zebra #jhs #chronicillness #chronicpain #chronicpainwarrior #PAM16 #PainAwarenessMonth #IAmAPainWarrior #invisibleillness #USPain
For those of you not following my Instagram (which, why not?), I did get in to see the hand specialist on the 16th! It was much sooner than I expected to be able to see them.
After a physical exam and some x-rays, it was determined that my thumb is actually … okay. Well, it’s probably recurring tendonitis or something like that. He said I could do an MRI if I wanted, but since my thumb was starting to feel better already I figured it probably wouldn’t show anything (though the next time it flares up badly I’m going to request one). My other options were to do nothing, request specific occupational therapy or physical therapy, or steroid injections. I didn’t like any of those options so I was trying to be more specific about how I can’t even write because it hurts too much.
I have decided to do genetic testing for Ehler-Danlos Syndrome, even though I know that EDS Type 3 (Hypermobility Type) doesn’t have a genetic marker. However, when I look at the list of typical symptoms for classic EDS, I have a lot of those too, so I want to be sure I don’t have that one. I do fit EDS Hypermobility Type far better, but I want to know for sure.
So I called my rheumatologist, who had mentioned giving me a referral to a geneticist if I wanted to pursue testing. He sent a referral over to the geneticist and when I got the phone call, I find out they are the ONLY adult geneticist in the entire state of Colorado! Because of that, the wait to get in is obscene. I am on the calendar and now I’m on the wait list, just in case an opening appears.