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I Think There's More Going On....


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Hi everyone!

I wanted to see if anyone had thoghts they could share with me...My POTS syptoms have been fairly conrolled for the past few months, so I have increasingly noticed all this other health stuff that is going on. I have been doing some research, and I feel like there is something else beside POTS causing my discomfort. I have a lot of overlapping syptoms, with POTS, EDS , Fibro, CFIDS, etc... and I was wondeirng how you all got your diagnosis for those types of disorders.

I am in pain 24/7 with my neck and especially at the base of my skull (tender to the touch) along with my shoulders, and I have horrible joint pain all over. I also bruise really really easily, and have really bad chest/rib pain that I've been told is costochondritis. I am always exhausted, and need to nap on most days even if I sleep 9 hours at night. I just feel like my body is in agony all the time, it flairs up and is really bad on some days, but I have been ignoring it for so long I'm not sure what to do. My ANAs always come back fine, and I tested negative for Lupus and Sjogrens, and the last rheumatologist I saw said I just needed more sleep.

I am very grateful to be doing so much better with my heart rate and dizziness issues, but I am sick of being in pain. I know there are lots of people worse off, so I almost feel like I shoudl just keep ignoring it, but some days I just want to feel normal again.

Anyways... any input would be appreciated. Thanks!!

Claire

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Hi everyone!

I have a lot of overlapping syptoms, with POTS, EDS , Fibro, CFIDS, etc... and I was wondeirng how you all got your diagnosis for those types of disorders.

Hi Claire -

Yes, these are all overlapping - if you hang out in support groups for these syndromes, you'll see a lot of connections. Each of these syndromes have some precise criteria to be diagnosed with such.

You may wish to pursue a specific diagnosis, but you may be like many who don't meet the strict criteria, just a lot of similar symptoms. Getting a diagnosis takes time and seeing enough Dr.s. Not sure if being formally diagnosed with a syndrome makes much difference in treatment, but it may give you some peace of mind.

Medicine just doesn't know what's going on in this area - but you are very right, something more is going on. I suspect that the muscle inflamation may be causing the POTS by way of increased vascular perfusion secondary to the inflamation. Find what causes the inflamation and that will fix the POTS (in those with muscle symptoms, not pure neuropathic POTS).

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Guest malosp

Hi there,

I always suggest to everyone that presents with the typical symptoms of tachy, joint pains, dizziness, extreme muscle aches, chest/rib pain (I had that big time), brain fog etc to at least investigate lyme.

I am not a doctor and I just give my suggestions. Read my post to one of the recent newbies Holly. .

In addition, go on med help neurology, which is not a forum but just educational site - many people post there with many of your symptoms. Not only lyme but for other causes of their symptoms. So it might give you some ideas.

Good luck.

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as someone who has a dx of HEDS (aka EDS III), i can tell you that the type of back and neck pain you describe is familiar to me. My spine is hypermobile, and easily gets out of whack. You might want to look into getting a doc to do films of your spine (MRI) and base of your skull... and/or ask about the lyme testing, as that's an easy blood test.

nina

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hi Claire!

i also got severe neck, thoracic pain...along w/ other joint pain..and fibromylagia.

just wanted to let you know==that am doing b-12 shots 1x/month....and has helped with pain alot.

doesn't take it allllllll away....but quite a bit of relief :blink: ...as any relief is GOOD, needlesstosay!!!!!!!!

good luck,hun...get better!!!!

(((hugs)))

Maggee

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Thanks for all the imput - it really helped me alot!! I am going to my PCP this week, luckily he is great and will refer me out to whoever I want, so I want to talk to him about all this stuff. I am sooo grateful for this site and all of you all - I would never have heard of any of this stuff without you.

Anyways....I have read about Lyme and actually fit the bill, I asked my doctor about it before I got my POTS diagnosis, and he asked if I'd ever had a rash after a tick bite and I told him no - the only tick bite i know of was about 15 years ago. BUT- I have been a avid outdoors person and studied biology in college and grad school and was definitely in the woods alot. And I rode horses more than a few times. I am going to ask to get tested, it can't hurt. I have fevers all the time for no reason, and my lymph nodes are often swollen, along with the neurologic stuff it would make sense.

Nina- I also have thought EDS or cervical stenosis issues/chiari malformations are something I should get checked for, but my joints are not hypermobile at all (in regards to EDS), except for maybe my neck, which is really bad. What type of doctor treats/diagnoses EDS?

Thanks!! Have a good night :blink:

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As someone who has recently had a positive blood test for lyme, I've learned a lot that had I known 15 years ago, I may not have been where I am today.

Among those things I've learned is that 50% of lyme patients don't remember the bite or the rash. I have a positive western blot specific for lyme -active infection- and do not remember either.

Additionally, the original screening test that is used, the ELISA, is said by lyme doctors to be worthless, as having a 50% false negative especially for chronic lyme pateints.

Chronic lyme and acute lyme are not the same animal anymore! Some doctors would know to suspect acute lyme, but few would be able to identify chronic lyme. Some even deny the existance of chronic lyme.

I've passed my arthritis stage long ago, cardiac/POTS symptoms began 12 years ago, and I am now a neurological mess. I use a cane or wheelchair , have severe breathing issues, cannot focus or read for too long, muscle issues all over the body to the point I was being evaluated for ALS (lyme can mimic that and many many other diseases)

My point is not to tell you that you have lyme, just that IMO an evaluation is in order, and needs to be done properly. I had a negative ELISA 7 years ago when my symptoms were like yours, and was told not to worry about lyme. I didn't. And today I am not functional and have positive serology. If you would like a referral for a lyme specialist in your area, let me know, I can find the listing for you.

Hoping you get some helpful answers soon!

Ariella

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