my doctor yesterday added polyarthritis to the diagnosis. as many of you know, i have been complaining about swollen and stiff joints, especially in my fingers, but also hips. so now i have polyarthritis??? on top of pots?? we are doing more blood tests to check other things out (another lyme titer - already tested negative, but my doctor feels sure if i had late lyme it would absolutely be positive. i'm pretty sure i have heard otherwise), and an ANA (also tested negative before).

it seems incredibly unusual i would have arthritis on top of pots. i am 24! it doesn't run in my family, and i had a rheumatoid factor test done before which indicated i don't have a susceptibility to it.

i think that if the pots isn't causing the arthritis (which seems unlikely, i haven't heard much about that), then something must be causing the pots.

For those who have any hypermobile joints, arthritis at an early age isn't odd.

I have it in my back, neck, right SI joint, and maybe the starting of in a few other joints that haven't been x-rayed. There's also some connective tissue damage in my ankles - though that hasn't be diagnosed, it would take an idiot to miss it. I'm 25 and have had the back pain since I was 14 years old and, no surprise, some hypermobile joints. My ankles and knees have hurt for as long as I can remember.
I have had a "polyarthalgia" diagnosis - basically pain/aching in several joints. Blood work showed nothing.

What has helped me more then anything is that I don't fall several times a week anymore! Though I was mostly falling correctly to prevent bad injuries, it was still taking a toll on my body and really jarring my back. Making sure to stretch and when something pops, make sure it's back in place has helped a lot, too.

As I've said elsewhere, just being fatigued makes us hurt more. If there's any sort of light exercise you can handle, such as swimming, it would probably help you a lot as well as build up a little stamina. How you feel mentally, of course also plays a big part.

I ran across something today that you might want to look at. It is called Reactive Arthritis. It ran a bell because of some of the things you mentioned eating in Africa.

rosie, that is incredibly interesting. i have never heard of it before. it seems to be a great possibility for myself, except for the eye inflammation, which i have not had and which sounds like is critical in making a diagnosis. also, it says, the HLA-B27 gene is commonly seen in patients with reactive arthritis. i tested negative for this, but am being re-tested. and, given my history in africa, it sure would be entirely reasonable for me to have gotten some crazy bacteria. however, i also developed the arthritis about six months after returning from africa and after starting to notice things being off, and the article indicates that reactive arthritis often occurs about three weeks after exposure to bacteria.
yet, this has certainly been the best explanation. i am planning to see a rheumatologist as soon as possible to follow up on this symptom.

quote:

however, i also developed the arthritis about six months after returning from africa and after starting to notice things being off, and the article indicates that reactive arthritis often occurs about three weeks after exposure to bacteria.

That was only one article I scanned. Another said the first symptoms may be so mild that they are not noticed or there may be an absence of symptoms in the beginning.

welcome to the club. I have had arthritis since I was 9 yrs old. Enbrel has been a miracle. I have had sjogrens, raynauds, iritis, and all kinds of the associated stuff, oh and a positive skin biopsy for tiny bit of psoriasis, but B27 negative.

AND, u should know that there is a large subgroup of POTS patients with arthritis. BTW, mine flared up after a rubella vaccine we had in school. Three weeks later, I couldn't walk and spent 6 weeks in the hosp (that is what they used to do...pretty strange childhood experience). I later was a subject in "rubella associated arthritis," and my hx and nbrs were consistent with the other cases and I can never have another rubella vaccine again nor am I immune to it. There was a class action suit, because, like me, many other children had similar reactions (no one I knew personally). There was a class action suit, and as an adult and totslly frustrated because back then there were few treatment options, I investigated this in the medical library. I missed the class action suit by a few months. Too bad, it is all documented in the state health dept. YUP, true story and I imagine I would have gotten RA later in life, as it runs in my family, but in my tachy heart. I do believe the vaccine caused such an early onset. Yes, I believe the POTS and autoimmune disease are related, but I doubt we will know the whole story in our lifetimes...

^I've wondered if I should have my nails checked for psoriasis. I have cycles of pitting on my finger nails and a few toenails, but no lasting damage or discoloration that would suggest fungus - plus I've had it for nearly 13 years now. So far I haven't found really any information on how the cycle acts or what mild nail psoriasis would be like - just pictures and descriptions of when it's bad. No family history of it, no skin symptoms, and HLA-B27 negative.

You can add me to the list of multiple joint pain sufferers as well. I'm still not dx with anything since it's taken me so long to get in with the rheumy but both my orthopod, my infectious disease doc, and my neurologist think I have some kind of inflammatory arthritis. I'm seronegative for RF, ANA, Sjogren's, my sed rates are normal and my only positive findings are bilateral hip bursitis (bilat shoulder MRIs pending), slightly elevated CR-P, and high urine creatine. I'm just praying my rheumy is as much of a genius as he's reported to be and can pull it all together.

But my question to all who do have some kind of inflammatory arthritis, do you use the DMARDs? If so, how are they working for you?

One more thing GracieTiger, I assume your doc has tested you for coccidioidomycosis (Valley Fever)? My infectious disease doc here in AZ zoomed in on it immediately and it is also endemic in CA so you may want to look into it if you haven't already. I'm still waiting for my test results.

hi mccaimless -
no, i haven't been tested. my symptoms began prior to moving to cali, but it is always worth a shot! i read the wikipedia entry for it, and it doesn't sound totally unfeasible. i think, more importantly, i need an infectious disease specialist.
my pcp does not believe that my lymph node swelling and arthritis are separate from my dysautonomia. he believes that i had a virus of some kind, or still have, and my immune system is still behaving as if i am ill. i was sick with a fever once in africa, i had a fever for a couple days, no swollen lymph nodes, and then i was better. it wasn't until two to three months later that i started feeling off. it seems unlikely, to me, uneducated in medicine, that all these symptoms came back months after the virus. is that possible? i'm more inclined to believe that if the dysautonomia is caused by a virus, then i still have that virus.

sorry, that wasn't all directed to you, mccaimless, just ranting!

but i am wondering, when you said you haven't been diagnosed yet, were you referring to all your symptoms or just the arthritis? do your docs believe your arthritis is a result of the dysautonomia? do you know what kind of dys you have and what it was caused by? you saw an infectious disease specialist - are you still seeking causes?

thanks for your response!

Hi Gracie, so sorry to hear about the arthritis and so young! Hugs to you too, Neshema!

You are right that being chronic you are less likely to test positive for Lyme, because then it is in your soft tissue, not so much the blood. Plus, it has shut down your immune system so not many or no antibodies.

hugs

Gracie, I was dx with POTS last year but am still seeking causes. I do not personally believe that my health problems, whether they be ANS dysfunction or now my poly arthralgias are simply "POTS". Hence my upcoming appt with the Rheumy to explore the autoimmune angle.

I think that in your (and my) cases it is also entirely possible that we picked up a bug or a virus or a fungus that is causing our problems, hence why a good infectious disease doc is not a bad idea. Given your foreign travel (and I have travelled quite a bit too) it is especially important that you see one knowledgeable in all the strange things that can inhabit our bodies without our permission.

As Jan has noted here, Lyme is a good possibility for those of us who have spent time in endemic areas and while finding a doc who is willing to go beyond the usual testing is difficult, it may be worth the extra work if nothing else is evident. But again, given your hx of an illness in Africa (my husband actually did his PA preceptor work focusing on infectious diseases in Nigeria) I would actively seek an African disease specialist if I were you.

I tend to go back to an autoimmune-type of origin for my problems (pending the results of the incredible amount of bloodwork I had drawn last week anyway—15 tubes!!)-- Physiologically it makes more sense to me that the reason why we are experiencing so many problems with so many body systems would somehow be immune-system-gone-haywire related (I also have a family member with an autoimmune disease). But again, I’m keeping an open mind and will continue to dig into this as long as I can to try to find the answers.

so well said, mccaimless. i had not idea african infectious disease specialists existed! will have to seek one out.
have you been tested for lyme? are you pursuing that too?
do you have swollen lymph nodes? mine seem very immune-related to me. hard to accept an autonomic dysfunction that doesn't include some kind of immune response.
so crazy how our bodies can just go haywire.

jan- how did you test positive for your lyme? i am assuming the titer i just had drawn will be negative, as my last one was, so what should i request next?
how long does it take for the lyme to transfer largely from the blood to the tissue? when would a person become "chronic?"

thanks so much for your inputs. so helpful!

Hi Gracie,

I can't remember how long, but emailed a friend to see if she remembers. It's not long.

I didn't test pos, but the test I did doesn't do titers, it does bands (Western Blot). I had forgotten to take my test results, so I was diag clinically. Which is how the CDC says it is to be diagnosed. The next appt. I took the test. My PCP isn't Lyme Literate, but agreed that I had Lyme. I really think that one needs to see a genuine LLMD to get a proper diagnosis and they test thru IGeneX.

I'll let you know if my friend remembers how long...

hugs