Joint Problems related to POTS?

[janineerrn]

Hi All,

My shoulder, hip, and knee on my right side always ache. I know a lot of people have joint pain with POTS. IU had xrays done on Thurs and they show bone spurs in both my hips. They didnt xray my knee or shoulder (Im sure they will, how they love to waste time). I was wondering if anyone else has this problem. My sed rates are always normal so its not due to arthritis osteo or rheumatoid.

Is this realated to POTS? Im kind of at a loss because this will bring a whole new set of problems. I was told Ishouldnt have surgery because of my bp issues, Im either way low or way high and the stress of surgery could be dangerous. I also need my tonsils out...... UGH.

Thanks

Janine

[joanie]

Janine, When my daughter (16) developed joint pain with her POTS, we were told it was most likely not from the POTS, but from the accompanying EDS . (Ehlers Danlos Syndrome- there is a web site on this, EDNF.org.) Lots of people with POTS have EDS- usually is mild, can mess with joints. We were'nt given any ideas on how to handle this- knee brace maybe if the knees slip out of place, like Lindz's do. (Be careful- not too tight- if it's really bad, might want to get it fitted- insur might pay.) Bone spurs, I don't know...maybe that makes it a whoe diff thing.

When my college son had his tonsils out, the procedure wasn't bad, but he swigged a lot of liquid vicodin afterwards.(He does not have POTS>) He got dehydrated from not being able to swallow much, and wound up in the ER for fluids. Felt a whole lot better after that. So, I would say, maybe you can stay there a while and keep getting fluids, or, make arrangements to return for the fluids.

Good luck- he did stop getting so sick from colds all the time after he had the tonsils out. That should uncomplicate a few things for you..Joanie

[briarrose]

Joint pain is such a bad symptom for me. It's one that plagues me nearly every day of my life. It gets so bad that I can barely walk at times and it hurts to hold a pen and write. I have the kids peel all the veggies now because it's tough to even do that.

My Sed rates & other rheumatology tests have all come back fairly normal too. I remember when my joint pain was the worst, my sed rate was at the very highest end of normal (The doctor told me that he would expect that for my age) Well just recently I had another Sed rate and it was nearly zero. I wish he would've listened to me when I said that just because I was in a normal reference range, didn't mean I wasn't suffering Who comes up with reference ranges anyway & does that take in to account all people?

Anyway, the first time that I went to see my Autonomic specialist he was leaning towards EDS, the second time I saw him he was thinking joint hypermobility. He put me on Neurontin, what a great drug that helps tremendously with the pain. It's better than a pain killer! My autonomic doc also said that kind of pain can be caused by overstimiulation of the neurotransmitters.

Good luck & I hope you find some answers.

Steph

[morgan617]

I have bone spurs in both shoulders, my, neck, a huge amount in my thoracic region in my back, and lumbar spine. I have a great deal of trouble with tendonitis and have had shots in shoulders, elbows, wrists.

My hips, especially the left, hurt all the time.

I attribute all this stuff to fibro, rather than POTS stuff, but who knows. So yea, I have spurs that jingle jangle jingle, as I go walking unmerrily along. I suppose I am the only person in the universe that knows that song, so everyone will be going, huh?.....

[ramakentesh]

Ive found a few people that seem to have co-morbid ankylosing spondylitis and POTS (like me).

[lissy]

What type of Doc DX's EDS and things?

Lissy

[gomindy21]

A geneticist can diagnose EDS.

[TypewriterGirl]

I have joint pain in all the same places. I used to play sports competitively so thought it was attributed to that, but my doctor just noticed it the other day. Worst in my hips, knees and shoulders, and all of my joints pop out of place. Good for party tricks, bad for everything else. Do you take anything for your joint pain?

[lissy]

A geneticist can diagnose EDS.

Thanks gomindy

[Elfie]

This is actually how I got diagnosed with POTS. I went to the Mayo clinic in a last ditch effort to get a diagnosis for my joint pain. They weren't coming up with anything so the docs started fishing for any other symptoms. I told them about the dizziness and fainting I had experienced. However, I didn't think much of it, assuming that it was caused by the pain I was experiencing because episodes were always connected to severe joint pain. They latched on and I got my POTS diagnosis. However, they still do not know what is wrong with my joints. One suggestion is atypical fibromyalgia -- because I only have pain in my joints and not at any trigger points. The docs assumed that I couldn't have EDS or a hypermobility syndrome. I was pretty stiff at the time. However, when I was a kid I had nurses elbow (where my elbows would dislocate). I built muscle and that went away, although I was still very flexible, but not necessarily in the wrists and fingers and places they often test flexibility at. When I started having pain I lost a ton of muscle mass and have since twice dislocated my knee and a have dislocated my shoulders before --- however, unlike most adults I pop them back in myself and go along my way. So, I have no idea what is wrong with me.