Pots Or More?

[icesktr189]

I have muscle aches pretty often and joint pain, but never severe enough to even need tylenol. Just irritating. My physician brought up fibro, but I dont think I have it. I do feel "sore" all over and weak and achy, but not really painful. Does this just sound like normal POTS?

[wyominglacey]

I also have this. Sometimes I do take tylenol or mortin. It sometimes helps and sometimes it doesn't. But I have had my thyroid removed and I have heard that thyroid can make you feel like that too. I'm not sure about that either. But I have noticed that when my thyroid is too low that I start to feel like that.

[sandymbme]

There are quite a few people who experience widespread pain just as part of their POTS. Personally, my pain is in my joints, and after repeated injuries finally found out I had EDS type III, but what you are describing sounds like the more common widespread pain POTSies can feel.

[MomtoGiuliana]

I get episodic muscle pain and headache. It lasts for a few days and then goes away completely. It was a lot worse in my mid-20's to early 30's. Personally, in my case, I feel this is something entirely separate from POTS. It is fairly mild fortunately so I have never aggressively pursued diagnosis.

[arizona girl]

Hi Dani,

I forgot what all your symptoms are. Do you have EDS? If you don't have you been checked yet for autoimmune or small fiber neuropathy yet? With your low blood pressure, it wouldn't hurt. My neuro's office can check for all kinds of rare stuff and does the skin biopsy for sfn, they treat ms, polyneuropathies, etc. They have a variety of ways to treat depending on whats wrong and they don't just treat symptoms, but try to treat cause. They're located in phoenix. Let me know if you want more info or pm me.

[lgtaylor100]

Arizona girl - I am going to a neuro muscular doctor tomorrow. In addition to small fiber neuropathy what other tests should ask for?

[arizona girl]

Igail, Well he should automatically test your large fiber nerves. If they do them a skin biopsy for small fiber. If you have large fiber they may do muscle biopsy. I don't remember your symptoms so hard to say what else. However, I did do a post after he tested me and I listed everything he did in it. Dr. Todd levine or Phoenix Neurological associates, SFN or small fiber neuropathy should bring it up if you do a search. It's over a year ago. Does your neuromuscular guy treat autoimmune causes?

Mind you I had already had a TTT done showing the orthostatic hypertension/tachy and pass out.

BTW, I met with him yesterday and we talked about the suspected lupus showing up and how that would effect my treatment plan. He basically said that if it is autoimmune it's autoimmune whether it's lupus, or small fiber neuropathy or many others. My IVIG treatments will remain the same, and perhaps another medication specific to a particular autoimmune symptom may be added. It is looking like more and more of the autoimmune conditions are going to have some form of immunogloublin treatment treating and challenging the defects that cause autoimmunity. FDA just approved one for lupus targeting defective immune b cells.