Muscle Pain ? Legs And Arms ? Pots?

[Achilles2323]

just been diagnosed with pots a little over a week ago

i have had leg and arm pain since being diagnosed feels like my muscles like a flu but i don't have fever stuffy nose or a cough

my arms and legs are just killing me

any clue what to do?

and is this direct cause from pots?

[Mytwogirlsrox]

Could be low potassium.

When I get dehydrated, I get muscle spasms.

[Achilles2323]

very well could be ...

wil check on my potassium

[Achilles2323]

any other possibilities?

[Guest Alex]

Vitamin D deficiency could cause muscle aches.

I had some muscular discomfort when my vit D levels were low, but nothing extremely bothersome.

Have your drs told you what type of POTS you have, or what might be the cause for your POTS? These are usually very important pieces of the puzzle and most likely will be the main factors that the drs should consider when establishing a course of treatment for you.

Maybe whatever is responsible for the abrupt onset of your POTS is also causing these other symptoms?!

Muscle aches and joint pains are reported as possible symptoms for POTS patients, but that's where my "medical expertise" stops.

If I were you I'd try to address this issue with the drs that helped diagnose you, or your POTS specialist.

Best of luck,

Alex

[cala J]

Hi Achilles2323

I get really bad leg pain, particularly if i have had to stand too long or if im having alot of blood pooling in my legs and on occasion my arms feel like ive done an extremely intense workout, when i havnt done a tap. just letting you know your not the only one. ive talked to my POTS specialist and she said unfortunately its part of it :-( she did prescribe me vitamin D although i havnt noticed a difference so far, but maybe it takes time and i will soon feel better for it :-)

[looneymom]

My son has muscle pain in legs and arms. We have started working with an OT that deals with myofascial pain syndrome. She has only worked with him one time but we will be going back to see her. She has also suggested that he go see an internal medicine/functional doctor. My son has the flu right now, so his POTS symptoms are much worse including the pain. I goggled web MD on Myofascial Pain Syndrome and I have a better understanding of it. My son has been in pain for over a year but no doctor seems to want to deal with it because he is only 12. However the OT, is going to write a letter to our doctor to see if she can get some other things rolling. She has worked with this sydrome for over 15 years and has had the proper training. My son had low vitamin D and iron levels but these levels are in the above normal range but he still continues to have the pain. I wonder about potassium levels because he has low renin and adlerstrom levels. Hang in there and hope you find help soon.

[arizona girl]

Looney, Have they checked your son yet for small fiber neuropathy? Skin biopsy and/or qsart can find it. This type of neuropathy can cause autonomic as well as sensory neuropathy. It is often found in patient's who are diabetic or have autoimmune diseases as well.

I have it and I had a lot of body pain.

[Achilles2323]

a lot of helpful things here

[Achilles2323]

they have not told me what has caused my pots or these other symptoms

getting very frustrating

i think they are just saying its a sudden on set without anything causing it?

is this possible ?

[arizona girl]

Ach, have you taken the opportunity to read the resources available on Dinet's web site. The link is at the top of the page before the forum links.

Much of what your asking can be found there. We are in the process of updating Dinet and will be updating some of those pages, but what has already been provided is still acurrate and true.

I found my cause by reading under the mechanism and causes section. I turned out to have Small Fiber Neuropathy and immune issues, which caused my pots.

I agree with you figuring out and ruling out potential causes is important. If you haven't already you should get a full copy of your medical records from your hospital stay including all doctors who treated you and all labs. See what they tested you for? That way you will know what they ruled out.

It is quite common that doctor's that don't understand the full impact of pots will not look any further and will just attempt to treat symptoms. This is especially true of cardiologists once they have ruled out any cardiovascular causes.

With your pain I would consider seeing if you can find a neurologist that specializes in autoimmune neuromuscular disease. I see one in arizona at Phoenix Neurological, perhaps you could contact them ask if Dr. Levine knows any one in your area.

Right now you are at the start line and there is so much for you to still learn. You will get it figured out, just be prepared that it may take time to find the right providers that can diagnose and treat you. You will get there though as long as you stick to it.