Doc Says Pain Is Not Associated With Dysautonomia?

[cindeebee]

This is my 4th Cardiologist, and I drive 50 miles ea way to see him because he told me he has treated quite a few patients with Dysautonomia. He's starting me all over in the diagnosing process...holter, echo, and another Tilt Table Test, which I don't mind since my other dr's didn't know anything about Dysauto, but when I mentioned back pain, all-over pain, and joint pain, he says Dysauto doesn't cause this and has never heard of this as being a symptom. He also said this regarding nausea (I get nauseous after eating - and yes, I've had my gall bladder checked...and isn't our stomach/digestion part of the autonomic system??? ) . I want to believe he can help me, but if he doesn't believe all my symptoms are related to Dysauto, should I run for the hills...again??? He agrees that I have Neurocardiogenic Syncope (as I passed out in 7min on TTT) but he doesn't think this would cause all my other symptoms. My energy and fatigue are horrible. I don't sleep well, waking every two hours and when I wake up, I can't wait til it's time to go to bed again (Lyrica works wonders for me, but only take it about once a week, when I really need a good sleep, because it causes constipation. Believe it or not I am able to ride my bike. It's really the only thing I can tolerate. I don't feel great afterwards or the next day, probably because it takes my heart rate to 200.... To make matters worse, for my work, I sit at a computer all day long, which I don't know how much longer I can take... low back and coat hanger pain are the worse!

So my question to all my Dysauto friends, do you have pain and/or nausea and KNOW they are related to Dysauto? Could it be a neuropathy issue? What about fibromyalgia (I asked my regular primary doc if she thought I had fibro and she said 'no')?

I'm soooo tired of going doctor to doctor to find someone who knows anything about Dysauto, let alone spending money I don't have

This new doc asked me to start wearing compression stockings, which have really helped with my dizzyness, but what am I gonna do in the summer???

Thanks for listening and best of luck to everyone on here. It's nice to have a place where we can all relate and share all our information. I wonder if our "doctors" ever check out this site??? Wouldn't that be great!

[bellgirl]

I am sorry about this for you ; He may only be able to help with the Cardio issues; if you read the posts here, everyone on this website has some sort of pain. I have nausea all the time, too. This is a condition of the autonomic nervous system, and it affects all the body systems. Why would a doctor say that nerve pain isn't a part of this? It's hard to believe that he said that. You need to be tested for Fibromyalgia, Sleep apnea and Chronic Fatigue. You need an Autonomic Nervous System specialist, even if you have to travel longer to get to one. My good doctors are 2 hours away for me. I would also get tested for Sleep apnea at a reputable Sleep Clinic, and possibly find a Rheumatologist for Fibromyalgia and Chronic Fatigue!! You need to find a doctors, who will give you the proper treatment. Let us know how it goes...

[goldicedance1]

Maybe you also have fibromyalgia. If lyrica causes constipation, then can't you take something for that.

I have POTS and fibromyalgia. There are many overlaps between the two and some of the meds used to treat the two are als osimilar. The combo that works best for me beisdes Labetalol and Mestinon tr are Pristiq and Topamax. I had been taking Zoloft and Lyrica for POTS but when I saw the Fibro specialist he said he got better results in patients using Pristiq and Topamax. Also, Lyrica caused excessive weight gain.

[Chaos]

Personally, the cardiologists I've seen have all been so focused on the heart issues and once those symptoms are controlled, they tend to neglect any other part that's problematic. It was the neurologists that specialized in dysautonomia that were able to look at all the systems. Both of them I saw did an "autonomic review of systems" where they would ask questions about all the autonomic functions such as digestion, breathing, sweating, dry eyes, headaches, pain etc etc. They didn't have any problem discussing all these areas and putting them together as part of a pattern of dysautonomia. It was the cardiologists who just focused on POTS/NMH and once those cardiac symptoms were controlled with meds wanted to announce that I was fine.

As I'm sure you've seen on here, there are a lot of us with pain issues. Some of us have joint hypermobility issues/EDS that cause our pain, some have fibromyalgia, etc. If he thinks pain isn't associated with this, then he might not be the "specialist" for you.

And yes, I have a lot of nausea and pain issues so you are not alone in that regard. And the neurology specialists I've seen all thought it was part of the dysautonomia pattern.

[kmichaelson]

Hi Cindee, I get a lot of joint pain as well like others have described... my doc hasn't really related that to dysautonomia and I haven't been tested for anything so I can't share much insight there. However, one thing that was interesting when I discovered I had POTS is that my leg aches that I've had my whole life were finally explained. I guess lower leg pain is pretty common with POTS (due to blood pooling I think), so it was nice to finally know what was going on there! Of course the "coat hanger" pain you described in your neck and shoulders is a common POTS phenomenon too (in this case, I think, because not enough blood is reaching that area). It's annoying when doctors don't put the whole picture together--I'm sorry yours is not taking all of your symptoms into account.

[comfortzone]

These crazy things all seem to go together -- many many of us have an heritable disorder of connective tissue or HDCT ... such as Ehlers-Danlos Syndrome ... this syndrome and the Hypermobility Syndrome have chronic pain as one of the hallmarks of it's troubles ~ and one of the more common features for patients with this - is dysautonomia of one kind or another ... So we hurt everywhere and we get dizzy, faint etc... Then we have all kinds of issues with our necks - which again can cause a number of neurological problems... Small Fiber Neuropathy will often cause 'neuro' pain like the tingly burning type - and also causes vasomotor instability ... but we get myofascial pain and arthritic pain ... and bone pain etc.. Lots of "itis's" like tendonitis. Also we have a lot of GERD and stomach issues heck your whole body has connective tissue - so we can be a mess frankly... I don't know if you have this or not - but it's worth looking into.

Also as many here have done - it may be worth going to a one stop shop place like Mayo Clinic or Cleveland Clinic or one of those kinds of places - so that your dysautonomia specialist can have you see any other specialist you might need while you are there. If you do have EDS - then a good doctor is Brad Tinkle in Cincinnati Ohio - he's a geneticist who's written good books - and knows about EDS'ers having POTS... Yet even so he refers out for the POTS like to see Dr. Blair Grubb or those guys like him that help us with both...

[cindeebee]

Thanks everyone for your comments. I guess my next step is to find another Neurologist as well (Is that the kind of doctor that deals with the Autonomic Nervous System?). You are right about my cardiologist only wanting to treat what is ailing my heart! I guess I was just wanting, no, hoping, I'm not damaging my heart while exercising with the high heart rate. I have seen so many other doctors and not one has helped me. This new cardiologist is just starting over, but I want to believe him when he tells me he knows about Dysauto. Maybe he'll dx me w fibromyalgia or CFS since Lyrica works so well for me (and I guess I'll have to 'up' my miralax! LOL). I have only been taking it at night to help me sleep and only once a week for when I REALLY need a good nights sleep, so it's not so hard on my digestion.

[ramakentesh]

i get pain from another autoimmune disease i have. its called ankylosing spondylitis and im often surprised by the amount of people with POTS or CFS who happen to have relatives with that illness.