Cfs/me

[HopeSprings]

I hope I did this right, I have never posted a poll. Lately I have been thinking a lot about my CFS diagnosis and wondering if the POTS symptoms are really just a part of this. Or are they two seperate entities? Or maybe it's the other way around-- dysautonomia causing CFS like symptoms. Just wondering what others thought.

[kayjay]

My doctor believes that something causes CFS so he doesn't give it as a diagnosis ( not that it doesn't exist) he just keeps looking for causes of fatigue.

Fatigue is my worst symptom but I am thankful that he kept looking for the reasons behind my fatigue or I would not know that I have dysautonomia, anemia and other problems. When you are as sick as we are the fatigue is crushing.

[poppetkazutaka]

I'm too hyperactive. I mean, I'm manic depressive so I'm sure that's where some of the energy comes from but if you knew me I have to constantly be doing something even when I'm not feeling well. I had a period there before I got my medicine right where I was too tired to do anything but once I got the Birth Control and Topamax settled, I was back to my old self of popping around. I'm like a toddler. Let's play, let's go shopping, let's go do this -I need to sit down a bit- Hey! Let's go do crafts, let's go play dolls, let's -I need to sit- go look at that over there, I want to write, I want to box things up in my room cause its messy now, and -I need to sit-...

So yeah. I'm definately not CFS-y anymore. I'm in pain, yes, and I have nerve damage. I do have days where I feel lethargic, but I will not allow myself to lay around, even if all I do is walk circles around the bed. XD

[toddm1960]

My worst symptom is also exhaustion, I have since been found to have a mitochondrial cause for my dysautonomia. I was dx'ed with CFS 3 years ago, at the time no one could find anything....so it's either CFS or all in your head. I think dysautonomia will be found to be the cause of CFS/fibro/MCS, if not mito problems also.

[mountain girl]

MY DOCTOR MENTIONED CFS AT MY LAST VISIT EVEN THOUGH HE DID NOT ACTUALLY SAY I THINK YOU HAVE IT HE ELUDED TO THE FACT THAT IT WAS A STRONG POSSIBILITY SORRY I CANNOT GET THE CAPS TO GO OFF ON MY COMPUTER ANYWAY I THINK POTS CFS AND EVEN FIBROMYALGIA ARE ALL RELATED AND ITS ALMOST LIKE WHICH COMES FIRST THE CHICKEN OR THE EGG

Fatique has been one of my main complaints. As for the CFS I would find if I did too much on days I did feel better, I paid for it later, like I would feel hungover tired as I called it the next day. So yes I think they are all related, but I am not sure it matters much with the treatment, isn't still basically treat the symptoms the best we can and find any underlying cause of symptoms if possible.

[MamaTrain]

This comment is directed at toddm1960....

How did you get tested for the mitochrondrial? I was recently told about a woman who made a huge improvement of hers by using some product called Ageless Xtra by some company called Uni-Vera. Have you ever heard of this? Just curious as to if it would help the dysauto symptoms! Thanks!

KC

[toddm1960]

I had a muscle biopsy done at Medical Neurogenetics with Dr Shoffner most frozen samples from U.S. mito clinics are sent though his company for testing. He advises the best testing though is done on fresh muscle tissue which means you have to travel to him. The problem with any supplements is the slow / poor absorption many of us have. I'm taking huge amounts of Co-Q-10 (obiquinol) creatine and carnitine all of which I tested low for, after 6 months I'm still low on them. I'll take a look at what's in the formula you talked about, but as with any supplement it's buyer beware.

[toddm1960]

Just looked googled the "ageless xtra".....half the sites listed called it scam......nuf said.

[HopeSprings]

When I say CFS, I don't just mean fatigue. In reading about CFS, all the symptoms including the orthostatic ones ((and especially neurologic ones) are included within the disease. When they diagnosed CFS (in the late 90's), I kinda blew it off, like ok, you have no clue what is wrong with me so you're giving me a diagnosis that has no test and cannot be confirmed and is just this catch all diagnosis. But lately after doing some reading, it really does encapsulate all my weird symptoms and now that it is gaining acceptance and is being researched in a real way, I am wondering if this was the answer all along. Maybe it is a real disease?

Todd -- What type of Dr. does one go to to find out about mitochondrial dysfunction? (if "dysfunction" is the right word?) Do you feel any better since being treated?

[ramakentesh]

The diagnostic criteria for CFS is now fatigue, post exercise malaise and autonomic dysfunction. Dr Marvin Medows and Dr Julian Stewart demonstrated that 80% of diagnosed CFS patients fulfilled the criteria for a diagnosis of POTS.

Dr Bell demonstrated that around 80% of his CFS patients had varying forms of orthostatic intolerance.

Dr Stewart's work suggests that chronic inflammation can have severe vascular consequences.

Dr somebody demonstrated that all 15 of the CFS patients he examined had reduced cerebral perfusion.

Principles symptoms of POTS/OI and CFS overlap - visual problems, oversensitivities to foods/noises and other migrainey type symptoms, etc.

The end conclusion of all this is that POTS and CFS are the same entity.

[Guest tearose]

Is anyone studying CFS/me and using theraputic doses of CoQ10? (1200mg +)

toddm...follow up question for you...

I am curious how much CoQ10 you were taking. I am trying to deal with the POTS cognitive issues with "therapeutic levels" of CoQ10. In the neurology literature is suggests 1200mg per day. I am up to 800mg per day now and in another week want to take it higher.

Also, for those interested, PD patients are experiencing some reduced fatigue and improved cognitive function but the doses were really high. If I recall, they also gave it in an IV instead of by mouth where we loose the potency of it through digestion.

[jump]

I'm so glad this poll was brought up, because I'm struggling with this myself.

Everything I've read recently suggests that new research shows that POTS and CFS are probably the same disorder. But my own doctors don't seem to know this, and/or don't agree with this. My EP, who I trust the most, says my debilitating fatigue, headaches and low-grade fevers aren't symptoms of POTS. My PCP, who is really the person who takes care of me since I have to drive two hours and pay a lot of money to see my EP, says the fatigue, headaches and fevers are "just POTS," and there's no need to look for any other causes.

I'm worried there might be something out there that could help me manage the fatigue, and I'm not getting it because my PCP says "just POTS." I'm also worried if I pursued a CFS diagnosis on top of POTS that I would just be complicating things, and that people I interact with (at work, at school) would take me LESS seriously. I feel like CFS has a stigma that POTS doesn't have, because most people have heard of CFS and have heard the out-dated debate about whether or not it is "real," whereas no one has ever heard of POTS so they don't think to question its validity as much. Plus, since I believe that whatever I'm suffering from - be it POTS or CFS or some as-yet-unknown disorder - it's all the same thing, so another diagnosis seems pointless.

But the fact is I can't lead a normal life because of my fatigue, and no one seems to be able to offer me any help with this.

[ramakentesh]

Yeah CFS has a stigma that at times is best to avoid. that being said I often prefer to talk to CFS patients because they are usually looking at their health problems from different angles to me and it gives me new ideas to discuss with my doctor. There have been some amino acids and stuff that they have suggested that did help with my fatigue.

I think there around maybe 20 POTS doctors in the world who have a solid knowledge of the condition and the current research. So take a lot of what you are told with a pinch of salt.

All the symptoms you describe are symptoms of PTOS and are symptoms of CFS - flip a coin

[sugartwin]

I'll be frank. CFS is a joke. A really unfunny joke. The way the diagnostic criteria are set up in the US... It's like you're tired...hmm...some bad headaches...hmm...Oh, and by the way if you have any other illness that is causing these symptoms it isn't CFS! So technically, getting diagnosed with EDS and small fiber neuropathy means I can't have CFS.

What's more to the point though, as far is the United States go, some people with CFS have POTS...and some don't! Some have flu-like symptoms, some don't! The way CFS is defined in this country offends my scientific mind. How anyone is able to conclude anything about CFS with such lax criteria is beyond me. I don't think it's as easy as POTS being equal CFS either. Would that it were that simple.

I would advise anyone to actively avoid a diagnosis of CFS. Unless the doctor is able to tell you exactly what he plans to treat you with and why he thinks the treatment will work, the diagnosis of CFS will do nothing but cause other doctors to view you as at best a hopeless case and at worst, a fraud. I speak from unfortunate experience.

[summer]

This is the Canadian Concensus Document on ME/CFS. I think it is very good and includes autonomic dysfunction in the diagnostic criteria. Check out page "8 of 28" in the PDF (page 2 of the document) for diagnostic criteria. It then goes on to describe these criteria in detail as well as treatment guidelines. I know it describes my illness perfectly. It's no joke according to this.

http://www.cfids-cab.org/MESA/me_overview.pdf

[HopeSprings]

Yes, Summer, this is exactly what I read that matched so well with my symptoms -- down the really weird neurologic ones. I like the Canadian criteria. These are very disabling symptoms -- I don't understand why in the U.S. it is taking so long for this to be taken seriously.

[toddm1960]

I started taking 400mg twice a day, and now have moved up to 800mg twice a day. Tishcon's Q-Gel-200 lasts 20 days at that level and is around $200, I haven't been able to get insurance to cover any of it. To be honest I don't know if I feel a whole lot better, but it's only been two months on the higher level so I'll stick with it.

I to have a CFS dx.....which I no longer talk about and even pulled from my profile. I do also think POTS, CFS and Fibro will all one day be found to have the same root cause.

When I felt mitochondrial diease was worth looking into I started with a geneticist (I called to confirm they saw others with mito) After a 6 month wait to see her she felt there was enough cause to get a muscle biopsy. She had sent others to Dr. Shoffner before and felt this was the best place to go if I wanted to make the trip. the trip was killer but I'm so glad I went, I would highly recommend Dr. Shoffner to anyone thinking of having a biopsy.