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halmad85

Joint Pain From Pots

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Is the joint pain that everyone (including me) experiences from POTS itself, or is it listed as a symptoms due to a related condition like Fibro? I'm just trying to figure out why POTS causes joint pain, and if I do have Fibro or not.

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Guest sonotech

Have you been checked for Ehlers Danlos Syndrome? Or is there a family history of it? Sometimes POTS and EDS can go "hand in hand".

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I looked EDS up and it doesn't seem that is what I have. I don't know of any family member with it. Plus, my skin isn't fragile. The only skin ploblems I have are burning sensation when laying down (on the area that touches the bed), and chronic folliculitis. I've just been having pain throughout my body for about 7 months. Lupus has been ruled out. So, I'm not sure why I have this.

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Guest sonotech

Do you have any joint swelling or redness?

There are so many autoimmune disorders that can cause your symptoms and sometimes it takes MANY years to find out what it is. If you haven't already seen a rheumatologist then you might want to. They can do more thorough testing.

Hope you get some relief soon.

Laura

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Thanks for the info. I don't have any swelling or redness...only pain. Usually sharp stabbing or sharp burning pains. Sometimes I'll have generalized burning pain, like in my hip. My right arm has hurt to lift for so long now. Other times it's like generalized aching all thoughout my body. I usually feel like I just worked out for the first time in years...but never actually did.

I did see a rheumatologist, but all he was interested in is whether or not I have Lupus. After he ruled that out, he just told me to return prn. But, he never tested me to find out why I have the pain, if it's not Lupus. Not even a single x-ray.

So, POTS itself doesn't cause us pain? It's more of related conditions. I'm wondering because on the website, it does list joint pain as a symptom.

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Hi, It sounds like you might have an unrelated neurological type pain. Burning is often caused by problems with a nerve. Neurontin is often very helpful for this type of pain. I was diagnosed with probably lupus and definite Rhuematoid Arthritis. I have had pain for about 7 years and POTs symptoms for 10+. My dr. only recently decided to treat more than just the symptoms as needed. Now I take several meds that have been very helpful for many of my symptoms. See a neurologist about the pain first then find a new rheumatologist, one that knows about fibromyalgia and about the many many other types of autoimmune diseases. You can look some up under the AARDA website. That was helpful for me. There are many types of connective tissue problems that can cause pain and aches. Aches can also happen to people who do not get restorative sleep. Many of us fall in that category and then have pain. Good luck. At least find someone who can get minimize the pain, that is a necessary.

Leah

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Could be fibromyalgia. You might want to ask about B-12 shots. Vitamin B-12 is apparently a scavenger of a nasty chemical that your body might produce too much of under stress and that has been implicated in fibromyalgia. B-12 shots are cheap and might be worth a try.

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Is the joint pain that everyone (including me) experiences from POTS itself, or is it listed as a symptoms due to a related condition like Fibro? I'm just trying to figure out why POTS causes joint pain, and if I do have Fibro or not.

I get joint pain every so often, mostly in the fingers, sometimes in my hips or elbows. Sometimes it hurts pretty bad, other times it is just annoying.

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Hi there,

the pain you're describing doesn't quite sound like fibro or EDS to me- I have both, and definitely don't get the burning sensation... of course, that's just me, but the idea of a neurological or autoimmune problem might be worth looking into.. my mom has had 4 surgeries on a broken arm in the past 16 months, and much of her pain comes from a burning sensation like this that they assume to be from nerve issues caused by the surgeries.

Best of luck and sorry you're feeling like this :blink:

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hi!

just my 2 cents:

i have had fibromylagia for years......

...but didn't start with joint paint [boths knees..shoulder...lower back=UGH!!! ] until i started on beta blocker--inderal...bout 3 months ago.

you didn't list your meds..so don't know if you on a beta blocker.

this doesn't seem coincidental to me at all, but as always, it could be...??

my overall pain is worse since on the beta blocker.

best regards,

maggee

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Hi! I attributed alot to "fibromyalgia" that was never really diagnosed but I just assumed I had it. Now I found out that I had bone spurs in both my shoulders where the nerve was hung up and caused me great pain with my rotator cuffs and had surgery on both of them and some of that pain and tingling is history. I am having an MRI of my knee next week because flatplate X-ray said torn meniscus. So don't assume fibro. Martha

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Hi!

I have chronic joint pain too but know one has found out why...so I jsut put it down to POTS...2 things flagged in my mind when I read your post..Have you been tested for vasculitis? The chronic follucilitis is the thing that flagged it in my mind..plus you can get chronic joint pain... here is good web site for research http://vasculitis.med.jhu.edu/whatis/whatis.html

"burning sensation when laying down (on the area that touches the bed)"..that is something maybe a neurologist could look into..that does seem something that a nerve misfiring might cause..POTS can cause joint pain but I would look into other causes too adn especially the vasculitis.

Hope this helps and sorry you are having this!

Stacey :-)

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You guys have given me so many things to consider. Thanks alot. I am on a beta blocker at this time. But, my pain has been there for much longer than when I started the beta blocker. Although I can say that my pain is at an all time high now. I pretty much can't get through a single minute without some sort of pain. I guess the only thing for me to do is just call my primary and tell him main pain is becoming worse, and I want to know why I have this. He'll probably refer me to a different rheum. Which would be a good start. Thanks everyone for all the ideas.

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just wanted to pop in and sa that I really hope that you find the root cause for your joint pain...

I know that i have suffered from some mysterious bone/joint pain for about 12-14 yrs now.. been tested for RA and lupus and a million other things. they are clue-less what it is...

DO you get swelling around your joints? and have you found your joint pain to be debilitating? meaning that its so bad that you can barely move? I ask b/c my knee keeps flaring up.. and whn it gets real bad.. I cant even bend or put pressure/weight down on it to walk...

Someone suggested to me trying bengay.. I havent tried it yet.. but wanted to suggests it .. in the chance that maybe it will help you or take the edge off from the pain..

good luck dear

hugs

dizz

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I've been tested for many things and it's all been negative. They said I don't have fibromyalgia. Dr. Grubb started me on Neurontin, it was the first drug that gave me relief from horrible joint pain that I had suffered with for over 10 years.

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WOW..........Thedizzies , just read your post .

I to have these days of 'flu ' like symptoms, you feel like its flu or you have done a rather huge work out , pain in joints and you ache all over like crazy, I just have to go to bed and stay there until it goes or I end up falling down somewhere through sheer exhaustion.

I also get this really horrible sensation when just my clothes or the bedlinen touching my skin drives me mad, almost like the skin in this area has now become horrendously over sensitive, its really rather horrid.

I get one lot of pain like this that runs down my right side of my face into my ear, eye, noes, teeth, jaw and neck ...........just touching it is like being hit by something hard on the side of the face.

I have pain at night 100 times worse than daytime especially down my legs, my hips are so painful I cant sleep. I do have some RA ( hands, wrists, knees, hips) but not all the pain can be attributed to this.

Yep....dizzygirl I'm the same after years of all sorts of consultants 'pocking and prodding me ' they still cannot find out what it is ..............I've been tested for everything from M.E. to them contemplating sending me to a vet for hard pad ! ( just joking) mind you my vet recons that they could do no worse job at times then my consultant, at least I can get to see them when I need to . I dont take beta-blockers so it cannot be attributed to these.

Willows.

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Well everyone....I went to my rheumotologist to discuss my pain and had an absolutely horrible experience. He was a terrible man with a cold heart.

Told me he doesn't know what's wrong and "what do you want me to do about it" . He made it clear that he wouldn't be giving me ANY medication because I take too many meds for someone my age. (Talking about meds for POTS and IC). He said I don't need to be on any medication and was certainly too young for pain meds. (I didn't ask him for medication by the way). I asked him to help me find out what's wrong and to treat me. When I asked him what I should do about my pain if he is unwilling to help me, and he told me to "LIVE WITH IT".

He was horrible. The worst doctor I've ever seen. I can't wait to tell my PCP how he treated me. I will see a different rheumo but I now have to wait until Aug for his first available.

I have no idea how this man can call himself a doctor! :)

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:) OOOOOOOOOOOOH I am sooo sorry that you ran into one of THOSE doctors...Unfotunately we have all run into one of two of those throughout this stupid disease...Just remember not to let him make you doubt yourself..keep searching..find a new docotor and I will keep you in my thoughts that you find some answers soon. Sending you hugs and say I understand and I amm sorry...soemtimes doctors are jsut the unbelievable!!!!

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what a gosh darn jerk!!!!!!!!!!!!!!!!!!!! I'm so very sorry that you had to deal with such ignorance dear..hang in there dizzygirl

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