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Three unrelated questions


briarrose
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I have three unrelated questions.

1) Does anyone else experience severe muscle cramping, spasms or after your muscle have been in a spasm for so long it starts to burn?

2) Has anyone experienced Mitochondrial disease and what are the symptoms?

3) What do you say to someone to make him or her believe that CFIDS really exists? Especially if it?s a doctor that your trying to persuade.

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I can only answer the first question. I've had the muscle spasms all over my body, and afterwards they ache and hurt terribly. I had severe shaking in the ER for more than an hour one day, and I was a mess. I could barely walk. Most of the pain is gone in two days. Sometimes afterwards, some of my muscles burn, but not usually.

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I can speak to #3 ... for me I've stopped trying. If its a doctor who doesn't get it, then I know this quack is not for me. If its a co-worker, I learn to avoid that topic and know that karma does exist and they will eventually 'get it' if not in this lifetime then the next... and if it is a friend who doesn't understand I try my best to educate her, then in the end know that some friendships change and new ones are possible.

For what its worth ... I believe you 100%.

Keep the faith,

EM

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I, too, can only speak to #3. Like EM, I don't bother trying to persuade anyone--doctor or other. Takes too much of my energy--mental and emotional--and usually results in me just being frustrated.

Your doctor is working for YOU, and your money is being given to that doctor in return. If the doctor can't do the job you need, find another one! I can also tell you that I don't usually discuss my CFS diagnosis with any of my docs, other than the one I saw just for that. I did tell one of my docs because he asked. I said "yes, I've been told I have chronic fatigue, for whatever that's worth."

Personally, I've not found that having that diagnosis has lead me to any fruitful intervention (--and isn't that the point of making a diagnosis anyway??). For me, the diagnois may not apply as that was given before my autonomic dysfunction diagnosis. Rather than focus on the CFS dx, I find it easier to discuss specific symptoms with my doctors rather than discuss the global picture of CFS. That label just as too much baggage with it and for some doctors, it immediately has them stop listening to me and treating me as an intelligent person. Unfortunate, but it's been my reality.

Nina

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3) What do you say to someone to make him or her believe that CFIDS really exists? Especially if it?s a doctor that your trying to persuade.

You say nothing; because you're highly unlikely to be successfu in convincing a doctor who doesn't belive in it. Most GPs are NOT qualified to treat illnesses like this; they're likely to think "depression" and write you an SSRI script and send you on your way.

Doctors have, on average, 8-10 years of education beyond college for their profession; and this tends to make many a tad arrogant. It's hard for them to change their ways of thinking. My advice is to get a different doctor; don't waste time trying to convince one that you're really sick.

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Deb ? Was just wondering if you?ve had any testing for the muscle issue and what medications did you take? Do you know if your potassium was low?

I?m struggling with brain fog, so I can?t remember what Dr. Grubb said about why this occurred. It will probably come to me later.

EM, Mighty Mouse & Sak ? I guess I should have given a little more information. I work with several doctors and for the last year I?ve been trying to educate them about POTS (the ones that will listen.) However I know how the ED docs feel about things like CFIDS and Fibromyalgia, most of them don?t really believe that they are a true diagnosis. Last week I was in a discussion with one of the older docs and we started talking about chronic fatigue. He started right off with a laugh and prove it to me attitude. I don?t have proof, just like many of the things that we go through with POTS; we don?t have lab/diagnostic tests to prove what were saying (symptom wise.) I told him that he was wrong. He said, ?Convince me.? I said that I was conceding for the moment and would leave some documents in his box.

I?ve since talked to one of the people that run the CFIDS group in my city and she provided me with some great articles. And encouraged me with some publications that will be coming out in the next six months, that will be extremely beneficial to CFIDS patients.

Anyway, thanks for everyone?s time and response.

steph

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Hi Steph,

I was probably low in potassium when I had the episodes, but I don't know for sure. It's hard for me to keep it at a normal level. I eat all the right foods AND take supplements, but I also suffer from GI problems. The supplements frequently just zoom through my system completely undigested. They are yellow and very visible (I don't want to sound too gross!).

Anyway, I haven't had any muscle testing. I was tested for epilepsy, which was negative. All of my doctors think that it was a combination of a reaction to Paxil that was exacerbated by too much Midodrine. The Paxil caused my anxiety to be MUCH worse so basically what I had was a panic attack that was made worse by high blood pressure. I have POTS and one of my symtoms is low blood pressure. The Midodrine helps that by raising my blood pressure so that I don't faint. The Docs cut the dosage in half. A couple of weeks after I was weaned off of the Paxil, I stopped having the seizures. I am on Zoloft now, and I feel much better. However, I still shake and tremble a few hours almost everyday.

The other medicine I take is Florinef. It's for the high heart rate. I was bed-ridden with the tacycardia before I started taking the Florinef. It took a couple of weeks to work, but when it did, I was like a new person. I was still far from what I had been, but a lot of my strength and stamina came back after about three months.

I wish I could help you with the brain fog. I seem to have it less when I eat smaller amounts and more frequently. It was an accident that I discovered this. I started it to help my GI problems, and then it dawned on me that I didn't have the brain fog as often. I only had it once today, and only for a couple of minutes. It actually was one of the scarier times. I was reading an article on my monitor and making notes when it hit me, and I could not focus at all for several seconds, and then when I could see, I didn't understand the words. I've also had it happen when I was in my car going somewhere, and then I couldn't remember how to get there.

The brain fog that I've been having is different then it has been. It used to be kind of like being in a fog, hence the word I suppose, but now it's more like a state of confusion. It feels the same way when it starts, like my head is sort of floating and yet it also feels heavy. And time feels like it is slowing down, and noises seem far away. But now I get confused. I haven't talked to my Doctor about this, so I don't know if this is normal or not. My sweet brother said it's old age! :)

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Steph, you could always check MEDLine and NIH for their CFIDS info. Also if you find something that you need in full text but can't access, let me know--because of my Ph.D. program I have full access to most academic journals, including medical, via Academic Search Premier.

Nina

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