Wellness

[lavendar]

Mindy: inability to stand, dizziness and even fainting has a definite diagnosis. It's called POTS or preload failure. It's diagnosed by a tilt table test. This is done in a hospital and if you have insurance it should cover it.

I just went through the testing. Google POTS. A good primary knows what it is. It is treatable with medication, compression garments (I just ordered compression leggings) and very slow graded exercise.)

[ValuSkr]

I'll still call it CFS.

[151949]

After I had my ankle surgery I was unable to even walk from one end of my house to another. It was horrible. They thought I had this but - after finally seeing the right doctor - a pain and rehab specialist - he diagnosed that all I needed , after 5 months in a wheelchair for the surgery - was extensive rehab. I had to work so hard in the beginning to drag myself through rehab but that was the key. I got my life back. At my first visit he told me for every min I was in that WC I was going to need 3 min of rehab. I was in the WC for 5 months so the rehab was extensive, but it was all worthwhile.

[adelle38]

On 2/12/2015 happy housewife said:

After I had my ankle surgery I was unable to even walk from one end of my house to another. It was horrible. They thought I had this but - after finally seeing the right doctor - a pain and rehab specialist - he diagnosed that all I needed , after 5 months in a wheelchair for the surgery - was extensive rehab. I had to work so hard in the beginning to drag myself through rehab but that was the key. I got my life back. At my first visit he told me for every min I was in that WC I was going to need 3 min of rehab. I was in the WC for 5 months so the rehab was extensive, but it was all worthwhile.

Can you tell me how this relates to the topic of Chronic Fatigue Syndrome?

[shoppingT]

On 2/11/2015 Ford1224 said:

It seems when they cannot figure out how to treat someone's illness, they simply rename it. and so "chronic fatigue syndrome" is now "systemic exertion intolerance disease." Hard to remember, easy to forget. So what now? What's next? A cure? Doubtful at best.

"Post-treatment Lyme disease syndrome" is the medical community's name for "chronic Lyme disease" which is believed not to exist. No treatments are being researched for this "syndrome," as it is more lucrative for the pharmaceutical companies to spend the research money on a "vaccine," not a cure. For those who have it, like my daughter, well . . . too bad I guess, any vaccine they come up with will not help her.

Yet they call the doctors who do try to help people with this extremely disabling disease "quacks" and "scam artists," and even take their medical licenses away. And one can get no disability for this, state or federal. Since she can no longer work, where does that leave her? Oh, that's right, she's nuts, a hypochondriac, and she should be taking major antidepressants or perhaps institutionalized. And hopefully she has a family who can support her. Fortunately, she does get modest alimony from her divorce.

Do I sound bitter? I only have to look at her, she has aged ten years in the last year. But she's faking all of this, she's just lazy. A woman who worked in a salon for 30+ years, standing on her feet cutting hair is now just a deadbeat.

There must be a better word than "bitter."

You are so right. Chronic Lyme exists. I suffered with it. I found a Dr. who finally diagnosed me properly. For many years I thought it was Fibromyalgia. It is reported in the Lyme community that CFS is part of Chronic Lyme.

I hope your daughter finds the treatment she needs.

[Suziepeach]

On 2/12/2015 adelle38 said:

On 2/12/2015 happy housewife said:

After I had my ankle surgery I was unable to even walk from one end of my house to another. It was horrible. They thought I had this but - after finally seeing the right doctor - a pain and rehab specialist - he diagnosed that all I needed , after 5 months in a wheelchair for the surgery - was extensive rehab. I had to work so hard in the beginning to drag myself through rehab but that was the key. I got my life back. At my first visit he told me for every min I was in that WC I was going to need 3 min of rehab. I was in the WC for 5 months so the rehab was extensive, but it was all worthwhile.

Can you tell me how this relates to the topic of Chronic Fatigue Syndrome?

Or fibromyalgia?

[chrystaltree]

So how exactly does giving it silly name change anything ???? I don't know where this is even coming from. It's been an accepted syndrome for many years now. When patients present with the a specific constellation of symptoms, it's always taken seriously. No doctor worth going to ever dismisses the patient's complaints. Many have it but no two people have the exact same presentation or symtoms and there is no diagnostic tool. No imaging, no blood tests. I don't think the problem is that clinicicans overlook symptoms, it's that patients suffer with it for so long that WE overlook symptoms so when we do go to a doctor, we forget to list all of our symptoms. But, at the end of the day, dumb name or not, it still effects a lot of people. We still have no way of denitively diagnosing it and there still is not a cure on the horizon.

[sophiamarie]

I have a neighbor who was trying to get Disability Benefits for CFS. She tried for years with different lawyers and was always denied. My son (a doctor) said she should have concentrated on her "symptoms" eg: fatigue, depression, neurologic problems, etc. and have the documentation to prove it. CFS is too broad an "illness" to qualify for Disability, she was told.

Finally, after seeing a commercial for a lawyer who specializes in Disability Benefits, she was "approved" the first time, by a Judge who has an extremely high "Denial" rate in this city. Something like 85%. Either she was lucky or maybe her lawyer was that good. She was being treated for depression and neurological problem (oh, and also memory loss) and had medical reports specifically for those problems. CFS was never mentioned. The lawyer said the Judge would have thrown that out.

This was quite a few years ago. Maybe things have changed since then but it makes sense to me. I thought I read somewhere here that someone was trying to get Disability for CFS.

[LilacTree]

On 2/11/2015 newziesuzie said:

Ford I'm sorry. I've read some of your posts and know your DD's had a very very hard time. My take on the news is they want to give CFS better diagnosis and more attention and more respect for the people who suffer with it so I think it's good news.

We went over to the new apartment we are going to share to sign the lease and I noticed her teeth are turning black. I hope I am not watching my little daughter die.

[LilacTree]

On 2/12/2015 SuzzieQ said:

On 2/12/2015 adelle38 said:

On 2/12/2015 happy housewife said:

After I had my ankle surgery I was unable to even walk from one end of my house to another. It was horrible. They thought I had this but - after finally seeing the right doctor - a pain and rehab specialist - he diagnosed that all I needed , after 5 months in a wheelchair for the surgery - was extensive rehab. I had to work so hard in the beginning to drag myself through rehab but that was the key. I got my life back. At my first visit he told me for every min I was in that WC I was going to need 3 min of rehab. I was in the WC for 5 months so the rehab was extensive, but it was all worthwhile.

Can you tell me how this relates to the topic of Chronic Fatigue Syndrome?

Or fibromyalgia?

Or Lyme Disease?