Dysautonomia

[Darlene]

i am in so much pain. lower back, upper back, hip on right side, left knee, my legs, my feet. i dont think dysautonomia causes this. i tried working, but made my symptoms worse. i dont know what to do. i was diagnosed in 05, i thought i would get better, but i m not. what causes all this pain? and i feel nauseated all the time. kind of feels like i have the flu 24/7. and if feels like i have this lump in my throat, like i have an allergy to something. i have wondered if mast cell was a possibility, but who can i go to for testing. i see dr. grubb, but he didnt seem to know.

[Sallysblooms]

Have you been tested for Vit D, b12 and seratonin levels?

[Darlene]

no. i was put on isoniazid 5 or 6 months ago. i think i read somewhere this med can deplete vitamin b12. i didnt know u could check seratonin levels? i wonder too if my muscles and tissues are getting blood supply.

[HopeSprings]

Darlene - pain has become a bigger symptom for me too over the past year. Ankles, legs, hips, back, feet. Along with very odd feelings in my arms and hands. I don't know what this is about, but I'm pretty sure it's part of this illness. I feel like the thing (this horrible, evil thing, whatever it is) is progressing ..and it's scary sometimes.

[GingerA]

I don't know what allergies you have but since I have been taken off of gluten I can tell a huge difference in the way I feel. The docs told me that I may not have an "allergy" but might have an "intolerance" to gluten. My nausea is very minimal and sometimes not at all. So far my pain level is very low. Low enough that over the counter meds can relieve it. That has NEVER happened before. Maybe you should try some diet modifications. It couldn't hurt anyway. I am currently off gluten and dairy. I am suppose to cut out sugar too but I am having trouble with that one!

[stacdliw]

Northern Dancer, have you been tested for GERD? A lump in the throat is a commom symptom of GERD. As for the nausea, you may want to make an appointment with a GI and be tested for gastroparesis, which is slowered digestion. I believe gastroparesis is a symptom of dysautonomia. I have severe GERD and moderate/severe gastroparesis. GERD can cause nausea as well. I take phengren for the nausea and it is a life-saver!

I,too, suffer in pain on a daily basis. Do you have fibromyalgia? I suffer from severe fibromyalgia and suffer from muscle aches in my legs, arm, hips-- heck, my whole body aches! My primary care physcian prescribed Tramadol which helped a lot. Now, I have an idopathic pain disorder in my abdomen that radiates to my back and I see a pain specialist and take oxycodone for my pain.

I was just officially diagnosed with POTS in 2010, but my neurologist thinks I've been suffering with dysautonomia for over 17 years since I first contracted Chronic Fatigue. Each year has gotten a little worse than the last. My only hope is that since my disorder appears to be idiopathic that one day, it may disappear as quickly as it appear. All I can do is hope.

But, please go to the doctor if you are suffering. There is no need to feel nauseous or be in pain. Some people hate to be on medication. Heck, if medication makes me feel better, I say take it!

[golden girl]

I also have the gastroparesis from dysautonomia so if you could I would have that checked. As far as the Vit B12 I use the sublingual 2500mg daily. Sublingual dissolves under tongue and gets in your blood stream faster.

[Darlene]

bev ray,

i had to laugh when u called me northern dancer. lol. yes, i was diagnosed with fibromyalgia. that wouldnt cause this much pain, would it? i have never been back to the dr. that diagnosed me. she said to theres nithing that can be done about it. she said go to www.arthritis.org and learn all i can. and when i tell my family dr about how much pain i am in, they just tell me to exercise. lol. i have tried to excercise. makes me sick. i didnt know there was a pain specialist. hows come i was never referred to one. i dont want to talk bad about my dr's cause they do help me sometimes, but sometimes i dont think they know to much. isnt there a such thing as a pain management clinic also?

[issie]

I was first diagnosed with fibromyalgia but later - years later - they figured out I also have Ehlers Danlos. This can cause the pain you're speaking of.

Issie