Quote:
Originally Posted by unjour
Hi Lester,
Your situation is very specific and I'm not suggesting that this is the cause- only that the incidence of "coat hanger pain" is very high with people with OH and POTS. Maybe it exacerbates the original injury or makes it difficult for it to heal?
There is a lot of stuff on the web. This is from Nature:
"Neck pain was reported by 53.6% of subjects. Orthostatic hypotension was present in 57.1% of subjects. Neck pain was reported by 75% of subjects with OH and 25% of subjects without OH (P<0.03, Chi-square). Features of such pain included positive correlation to upright posture and exercise, and relief when lying flat."
Btw, I also see Dr. Jaradeh at Stanford. And whatever the problem is, I think finding a gifted PT can really help. When I was doing IVIG, my PT designed a program that was supine and then mixed supine and upright to slowly get me back on my feet. For what it's worth, I had fairly severe pain/numbness/odd sensory issues in my left arm/chest/neck/and sometimes face and it was not interesting to my doctors because it was so non-standard.
Good luck.
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Hi unjour!
Thank you for the response. It's interesting to think about how the OH could be related to the neck problem. I've heard of people having POTS also experiencing the "coat hanger" pain problem, which is interesting because it's in the same area that I experience my pain. However, I will say that my dysautonomia symptoms didn't start until after a year or two of the neck pain (the order of progression was: muscle problem in my pec/neck alone in 2016, but getting worse in the neck in the start of 2017, IBS starting later in 2017, calf muscles start to feel tender and knotted up starting in 2018, then mild dysautonomia in 2019, worsening just a bit in 2020 and being diagnosed with POTS/OH).
My personal theory is that the nerves and muscles in the neck are unhappy from all the compression, and from what I've read it's not uncommon for people with TOS to have dysautonomia. Thankfully I don't have any of the other syomptoms associated with autonomic neuropathy, like dysfunctional sweat responses (I had the table tilt test at Stanford and they also measured my sweating, which is normal).
Dr. Jaradeh did prescribe florinef for the POTS, although I haven't had the need to take it because I don't feel really bad enough or been at risk of fainting. However, things have been getting slightly worse since then. My reasoning before was that there seems to be a clear issue going on with my neck that I'd need to try and address much better than I had before before doing
just medication.
Btw, a lot of bloodwork was done to rule out inflammatory causes of autonomic neuropahy, which all came back normal, although my CoQ10 was low (or rather, the percent of oxidized vs. un-oxidized CoQ10 was higher than it should be), so I am supplementing with ubiquinol (didn't affect any symptoms, but in labwork it raised the un-oxidized CoQ10 to be well past what it should be in the blood).
Anyway, I'm rambling a bit, but I definitely agree that finding a good PT is going to be important here. I was thinking about looking at UCSF in the future, since at the moment my insurance doesn't cover Stanford (but that should change and I'm going back to Dr. Jaradeh this Fall). My biggest concern right now is trying to find a medical group or clinic that has people doing both PT and something like Botox for the neck, if that is indeed going to help with any potential TOS. I bought the Peter Edgelow kit myself and have the top rib mobilization stick, but am somewhat at a loss even with the DVD instruction kit on how to make progress here (the three PTs I've had so far at different times aren't really aware of TOS or the Edgelow protocol). I do have a copy of Clair Davies' Trigger Point Therapy Workbook, so maybe I need to just work at this gradually myself while I look for a PT that can help me with some manual release as well.