Pots, Dehydration And Joint Pain

[volo]

Hi, I'm a new member, just had a TTT last week and was diagnosed with POTS, with alpha receptor dysfunction. I've been prescribed midodrine and beta blockers. I am so impressed with all the knowledge here. I'm still learning some of the basics of POTS. I'm in my 50's, have previously been healthy and active, and it seems I developed POTS a few months ago after a concussion.

Despite drinking about 4 litres a day, my skin looks terribly dehydrated (mostly on hands, arms, neck and legs - not around abdominal area) and I've developed obvious hollows around my joints, wrists, ankles, knees, neck, i.e. no padding around the bones. My weight has stayed fairly constant, mainly because I've become bloated around the abdominal area.

The doctor said I looked dehydrated and advised me to up my sodium intake from 3g to 4 or 5 g per day, which I've just been doing for a couple days. I also have joint pain, which I forgot to mention to the doctor because my symptoms were bad enough that I have not been up and around that much. Also, I was foggy after my HR went over 150 sitting in the waiting room.

I've just been on midodrine one day (I'll add the beta blocker in another day or so) and already am seeing now that I can be up and around more, that my joint pain (particularly in my knees) is limiting me. I've not had joint pain before my POTS symptoms developed. And while I've been limited in my activities, I have been consistently doing mostly supine yoga and weight exercises, but not too much in an upright position.

Can this be a side effect of dehydration? Is joint pain (and hollows or just skin and bones around joints) a common symptom with POTS, or are there other possibilities I should look into?

[looneymom]

Welcome to the forum. My son suffers from pain in the joints and muscles. He never had this before he was diagnoised with POTS. He drinks 2-3 liters of water a day plus gatoraide. So as far as I know its not from dehydaration. Our doctors do not know where his pain is coming from but my son is being referred to a hemotologist to be checked for MCAS. Another underlying cause could be EDS, I understand that this can cause joint pain. Lots of information on the form to look at and take to your doctor. Keep looking for other causes, this could be what's causing your POTS.

[Chaos]

Welcome! Sorry you have a reason to be here.

I think joint pain is fairly common for a lot of us. Certainly I started having a lot more joint pain when my POTS started than I had before. I doubt that it's caused by dehydration, but I don't know that anyone knows for sure exactly what causes it either. There's a lot of research on cytokine activity related to joint pain that seems to relate to us, but right now I'm too brain foggy to try to type it all out. Hopefully others will chime in here with their knowledge as well.

As far as your abdominal bloating- do you think you are pooling in your abdominal area? Have you tried using abdominal compression? A lot of people are getting some relief using garments like spanx or an abdominal binder to help with that issue.

[corina]

Hi Volo, welcome to the forum!

[volo]

Thanks for the responses and welcomes!

I recently got an abdominal binder and it does seem to help. My symptoms come and go, so I probably need to wear it longer to know for sure. In another thread, someone described how, after wearing it for a while, you feel all kinds of sensations/discomfort/sounds in that area when you remove it, and that's what I experience.

On the joints, I wonder if anyone else has noticed these "hollows" around their joints, like one has lost weight/padding just around the wrists, ankles, knees, neck but not elsewhere.

[E Soskis]

Joint pain can be associated with autoimmune disorders. I've had joint pain since my late teenage years - I do have an autoimmune dysautonomia and the pain has progressed over the years - my hands are thin and boney and my finger joints are beginning to swell and twist - my wrists hurt so bad at times that I cannot move my hands properly - I play the piano and that actually helps to "exercise" my fingers and wrists - I used to have an anatomy and physiology teacher who said "if you don't use it, you lose it!" - I think she was very wise.

[Guest wishing&hoping]

I, too, have hollows in my feet, hands and abdomen which my Neuro ascribed to weight loss (!). My dysautonomia specialist tho thinks it's EDS. I' m going to Cleveland Clinic in 2 weeks to see a neurmuscular specialist and Dr. Shields. I also have neck and back instability; so it's confusing. I've lost about 17 pounds from nausea and gastro problems; can't gain it back; but I've never had hollows like this with weight loss before. Am also chronically dehydrated; urine osmality test was extremely low. This is such a complex illness!

[Katybug]

Since your POTS was clearly associated with a head trauma, and you have been unable to do much upright activity, I would consider that it may just be muscle wasting from inactivity. Supine exercise (while often the only thing we can do) will not work your muscles, tendons, ligaments, and joint capsules the same way weight-baring exercise does. You may want to talk to your doctor about a PT referral to see if that can get your joints feeling more normal before starting to look for more complicated answers.

[volo]

I believe in use it (if you possibly can) or lose it too.

Wishing, it certainly is complex. I hope you get answers from Cleveland.

Katybug, yes, I'm hoping my knees will improve with more activity as I am able to be upright more. So far, my heart rate has been too high even for using a recumbent bike more than a minute at a time, as just sitting on it was already about 110 and it increased very quickly with any activity. Just started bisoprolol and that brought HR down, but I'm feeling rather ill, maybe need to get used to it.

I don't think muscle wasting is the whole answer though. I have been doing supine exercises with hand weights and leg weights for the past 2 months, and it has helped with rebuilding some muscle. But it hasn't filled in hollows around my wrists even though I was able to do most of the arm muscle exercises, some pushups, etc.

[Katybug]

Although I don't remember them being triggered by traumatic situations, you may want to Google "myositis ". There are 3-4 types of myositis which all result in muscle wasting. But I think those are mostly autoimmune (but worth you taking a quick look to see if anything is familiar).