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sideofsalt

Need Help With A Sequence Of Symptoms

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I have had a few days of minimal symptoms which has been terrific but that changed today. Typically, an hour or two after I eat lunch, my POTS symptoms decline and I can get around to run an errand or two. But today, I was shopping for 30 minutes and could feel an all-over muscle fatigue and drained feeling which I typically attribute to hypotension. Then, my left leg became cold and a little numb which I have experienced before on and off since my POTS dx a couple of years ago which I attributed to a vague dysautonomia symptom. Then my right leg became a little cold. I took some midodrine to see if I could offset some of this and it worked a little. A few hours later, I was preparing dinner and I could feel joint aching, muscle aching and cramping throughout my lower body and a little in my upper ribcage. The aching and cramping intensified through dinner and sitting down didn’t help at all. My legs felt like they just completed a 10-mile steep incline and decline mountain hike (which I’ve done before). About an hour later, the pain gradually subsided and my feet, knees, and a little bit of my cheeks were warm, red and flushed. I did not detect swelling in those areas. Right now, a couple of hours later, my lower legs and feet are throbbing and are slightly pink at the joints but not swollen.

Randomly, I’ve had throbbing shins at night that disappear in the morning but not across such a wide body area as today.

I see so many of my symptoms post-POTS dx through the lens of POTS but I understand that not all of the new symptoms I experience can be blamed on POTS. What goes through my mind is arthritis or mast cell, and I wanted to ask if anyone has experienced something similar and what road did it lead you down? Thanks in advance.

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Hi sos,

I've had the symptoms you've described. The throbbing vibrating leg pain is a classic symptom of peripheral neuropathy. This happens when the small fiber nerves are damaged and can cause many dysautonomia symptoms. The small fiber nerves also control your autonomiic and sensory functions. The sfn are what allow your blood vessels to constrict on standing and push your blood up to your brain. When those nerves are damaged the blood pools in the lower half of the body causing many of the symptoms you just described. The longer you are upright without laying down the worse the symptoms become, including leading to fainting. Sitting will not completely reset this, lying flat is better.

A skin biopsy can determine small fiber nerve damage. Then one must look into the many potential causes if that comes back positive. Diabetic neuropathy or diabetes is the most studied cause. However autoimmune diseases, chemical exposure, injury are also possibilities.

Try doing some research on this to better see if this fits your symptoms. There is a lot posted on this topic if you search the forum.

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Ive suffered from chronic leg/feet muscle pain aches for 4 years. Its horrible. Its autoimmune in nature from a rare antibody (calcium channel antibody)

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Have you been seen by a rheumatologist? The joint pain could be from inflammation/possible autoimmune so if you haven't before it might be worth getting checked out. I am currently being worked up for mast cell by a hematologist and I get a lot of the leg pain you are describing which I think it was interesting that he asked if I had that symptom too so I am thinking it might be related. I also used to get a lot of numbness in my feet/legs which I think is related to pots but I never found out. I see an neuroendocrinologist who does a sudoscan which can scan for small fiber neuropathy which I think I have in my feet. He explained it to me before that I needed a bone density scan at our next appt but I was having a little trouble following him about the neuropathy in my feet but it can cause pain/numbness.

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Thank you for sharing your experiences. I do get to see a rheumatologist later this month and will run this all by him. I did get my autonomic results and it did not show neuropathy.

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