ME/CFS, POTS, and pain during flare ups?

[xRobin]

Hey everyone!!  I hope Thanksgiving is going well for all!

I am primarily an ME/CFS patient who went on to acquire comorbid POTS.  It's difficult for me to understand where one ends and the other begins because the symptoms often overlap.  However, since developing POTS I have the blood pooling and other standing up stuff that I didn't have much of before.  I try to be upright and active as much as possible, though I'm always running into the ME/CFS symptom of "post exertional malaise" so I've never been successful with exercise.  Even a minute of recumbent bike or bed exercise knocks me back for days and pushing through it has only led to significant worsening of symptoms.  I keep trying because it's good for POTS so but far haven't figured out how to do much more than my bed yoga.  

Lately I've been having a flare up.  My POTS symptoms are worse, and I tire out after only a minute or two of standing.  I had to sit down brushing my teeth the other day.  My worst symptom is intense muscle pain.  I feel like I've been beaten up, or in a car accident.  I can't stand it, and getting up and moving around makes it much worse.  Is this a POTS thing?  

I've had some very extensive medical work ups but am limited to what I can do locally.  I just had a skin test for small fiber neuropathy, and I've consulted with Dr. Blitsheyn who found some deficiences that we've corrected.  All of my autoimmune stuff is normal (SED, ANA, CRP) except a borderline elevated Sjogren's marker.  I haven't had a chance to follow up because of family stuff going on but am hopign to see a rheumatologist after this flare settles down.  

Just wondering if there is anyone else here that sounds like me, that could offer some advice. 

[Pistol]

Hello @xRobin - I am sorry to hear that you are in a flare. I have similar symptoms as you when I am really bad and the fact that you are unable to exercise makes it that much harder to get back on your feet. It's very frustrating. One thing I wanted to point out is that I too get very bad pain when I am in a flare but mine is joint pain. The muscle pain you describe sounds like fibromyalgia, which is also a dysautonomia. Your doc can check you for this by trying trigger points. Also - when I was at my worst with fatigue and exercise intolerance my doc checked my Vit D, B12 and ferritin levels which were all extremely low. They all contribute to the symptoms you have and are relatively easy to fix. Especially the Vit D causes the muscle pain and fatigue. My friend suffers from severe fibromyalgia and when she gets bad her Vit D levels are aways low. After a boost ( 50,000 units weekly for 6 weeks then 2000 units daily ) she feels much. much better and it is the same with me. Please make an appointment and have your doc check these levels - I would not be surprised if that is the culprit!!!! Best wishes - and please let us know how you are doing!!!!!