A (very late, I'm sorry!) promised update.

Hello everyone

I have sadly been missing for a while after my rheumatologist visit. And I did say I'd come back ASAP, and it sadly hasn't quite been possible. Work has been horrible on my health and with added personal difficulties (family members dying... stuff like that), my health has taken such a plunge, that I honestly want to just check into a hospital and hopefully they can do SOMETHING to get me back on my feet. I've managed to sleep over 12 hours on weekends and such. And I still feel so exhausted.

Anyways... on to the rheumatologist visit. That actually brought out some interesting information that I think may be useful to many of us who wonder how we can have NCS and things like that and feel so exhausted all the time. Typing long blocks of text is not easy, so I'll put up a link. Here: http://www.martinez-lavin.com/Fibromyalgia.htm

So yes, I got diagnosed with fibromyalgia... which is odd to me since I'm not afflicted by constant pain (even though my whole body seems to be a tender spot... I can barely stand being touched, and getting poked hurts a LOT). But it seems that fibromyalgia may be another thing covered by dysautonomia... it's odd. I'm still having a hard tiem with the meds... Cymbalta didn't work at all, and now I'm on Lyrica, but it's not seeming to be especially helpful and I'm dizzy all the time. Dunno what goes after that.

[MeaganM8124]

Fibromyalgia and Chronic Fatigue Syndrome can definitely come with dysautonomia or vise versa.  I have been diagnosed with CFS and it's not fun.  My problem is that I refuse to except this as a diagnosis or cause because both Fibro and CFS are once again syndromes and not diseases according to the medical community.  So my question is WHAT is causing the CFS, vitamin deficiencies, and POTS?  I will not stop until I get answers.  I need my life back.

I bought a great book on Fibromyalgia/Chronic Fatigue Syndrome and I've been working with my doctor on finding a cure.  It's not well known, but there are some speculations on causes of these syndromes.  Some of them are viruses, bacterial, yeast, and parasitic infections.  I've already taken a round of anti-viral medications and am getting ready to take an anti-parasitic med.  The viral didn't work but I am hope the other will.  Type in parasites and Fibro in google and you will be totally surprised at what you find.  The book also recommends vitamins and natural remedies to help with the fatigue which have helped me some.

I hope you can find some relief with the right medication.  I haven't had any luck so far but I keep trying.  Beware of Lyrica because it can cause a lot of weight gain.  That is one of the biggest complaints so watch your diet and try (yeah right) to exercise while on it.  There is a new med called Savella that is not supposed to have as many side effects.  Good luck and I'm sorry to hear about you difficulties.

[Sharingme2]

Hi Meagan,

I am in the exact same boat as you are with the CFS and POTS, I agree with all you said above.  I saw a great CFS specialist yesterday for the first time.  I have seen a lot of cfs docs and this one is by far the best one I have had.  I am doing a full blood work-up tomorrow to look for the viruses, bacterias, immune functioning, cellular functioning, etc etc etc...I know that one day they will figure out what is causing these symptoms that so many people suffer from. It is getting more and more attention, and slowly it is acquiring more respect than it has in past years.  I started on Midodrine for the POTS, a very low dose, a couple of weeks ago and I feel that it is starting to help me.

Keep me posted on your progress!
Shari

[laurab2818]

Hi,

That's good that the Midodrine seems to be helping.  

I too have CFS/FMS and POTS.  I saw a great CFS dr. for many years who retired a couple of years ago.  I'm in upstate NY and  I am curious about who your new CFS dr. is.  It's so hard to find good ones!

Thanks,
Laura

[MeaganM8124]

Okay so I took the parasite RX Albenza last night.  After reading so many articles on causes of CFS, parasites was the last thing I would have ever expected.  But, new studies are verifying that 50% of CFS/Fibro patients have parasites and they do not always show up in blood, stool or urine samples so many doctors do not even consider this as a cause.  Parasites can become systemic which means that they can get into the lungs, kidneys, liver, muscles, joint fluid, etc...  90% of the world's population have parasites but it usually doesn't affect people unless they have a compromised immune system.  More and more studies are showing that people with chronic illnesses are infested.

An hour after taking the Albenza, I had many, many, different worms and parasites come out in my urine (I know disgusting right?).  Which means that they are in my kidneys and bladder.  This is really gross and honestly, I didn't believe I had them but wanted to rule it out.  When I woke up this morning, more parasites and I felt horrible, like I had a bad flu (apparently they call this die-off where the parasites are giving off toxins as they die).  It is now hours later and I feel the best I have ever felt since I became ill 5 yrs ago.  My muscle pain is diminished, my tachycardia is not there, and I have lots of energy.  I just wanted to share this with you all because I now believe that I have a parasite infestation that has been causing or contributing to my illness.

[Sharingme2]

Hi Laura,

The doctor I saw is on Long Island, NY.  I live in Nyack (Rockland County).  How far upstate are you?  Can you see Dr. Bell?  Did you find any treatment that helped your CFS?  I went to the lab today for a blood draw...16 vials of blood!!!  WOW, that was a bit ouchy.  For my POTS and low blood volume, before I left the house I had 1/2 tsp of salt and 1/2 liter of smart water.  Then immediately after the blood draw I drank another 1/2 liter of smart water, a small can of V8 juice, and ate 1/2 piece of bread...then I went and got a steak for breakfast to try to help build my blood back up.  I was PREPARED!  I didn't know it would be 16 vials though...he is testing for bacteria, viruses, immune function, cellular function, inflammation, etc etc etc...

Hope you're having a good day!
xoxo
Shari

[Sharingme2]

OMG Meagan, that is incredible!!!!  I hope that the parasite treatment is the answer for you!  Could you really see worms in your urine??  I think I'd be SO freaked out by that.  But how wonderful that you feel so good today.  I hope it continues.  Please keep us posted.

xoxo
Shari