My recovery story

[Little Bluestem]

I am trying to be more aware of dental health. I have found that the time I am reading this forum is also a good time to floss my teeth.

 

[snowathlete]

Thats

Whit, perhaps our differences here aree more to do with nomenclature in the states and the uk. But Chronic Fatigue Syndrome is a syndrome. It even says so in its name.
http://en.wikipedia.org/wiki/Syndrome
I never, ever use the term CFS. (unless I'm explaining what a syndrome is)
I have ME. Using CFS over here will get you labelled as lazy/tired all the time/yuppie'flu-er.
And CFS is still not a diagnosis.

That's all well and good in theory, and i dislike the unhelpful syndrome label, but a lot of people have the diagnosis (yes, diagnosis) of ME/CFS, and regardless of the wishes of members of the ME community they are lumped together as one illness, which likely is more than one illness in reality. I'm in the UK and have a diagnosis like this, and I am treated the same whether I say ME or CFS - badly.

This isn't going to change until there is an easy test to differentiate members of this mixed group. Better to focus on other advocacy (such as getting people treated better no matter their label) rather than try and get a splitting of the labels, in my opinion, as it won't happen until there is an easy test to make that (which may be many) distinction.

 

[peggy-sue]

I've told my gp to call it WIG. (Whatever I've Got)
I don't really care what it's called as long as it is not CFS!
I object, strongly, to the CFS label. I do not want it on my medical records. I do not use it.
I do not have "fatigue". I have never had "fatigue". My body simply doesn't produce enough energy to operate itself.
I have trouble getting to sleep, I have trouble staying asleep. It's not "fatigue" or "tiredness.

Is the ME/CFS label not exclusively an English/Nice guidelines one? (I'm in Scotland)

 

[Wayne]

I object, strongly, to the CFS label. I do not want it on my medical records. I do not use it.

Hi Peggy-Sue,

I have a good friend who by all indications has "what we've got". When she could still work, she was a well-respected RN, with excellent health insurance benefits. When she became ill, she was able to tap into a wide variety of health tests, and had some of the most respected health care practitioners and researchers work with her and/or review her case.

Eventually an infectious disease specialist apparently diagnosed her as "likely" having an unidentified pathogenic disease. Another specialist diagnosed her as "likely" having an as yet unidentified autoimmune illness. With these medical reports from highly respected sources, in which ME and/or CFS were NEVER mentioned, she was able to very easily access disability benefits. ME and/or CFS are terms she's almost totally unfamiliar with, and I don't think she could ever imagine herself participating in a forum such as PR. She just couldn't or wouldn't relate.

 

[Little Bluestem]

Are these specialist making any attempt to treat her "likely" unidentified pathogenic disease or "likely" unidentified autoimmune illness?

 

[peggy-sue]

Interesting, Wayne!
So, if the terms "ME" or "CFS" are not used - then there is belief in an illness and access to help.
Unfortunately, ME is the correct medical term for the thing I've got, even if my gp doesn't know about it. (WHO ICD 10 G.93.3)
I don't like it either, I am of the opinion that WIG is a mitochondrial disorder (which my well have retroviral origins) and an accurate name still needs to be coined.
"CFS" is an invention of the psychos and needs binned.

 

[Hip]

How does the above CFS and ME nomenclature discussion relate to this thread, which is about chronic jaw bone infections, and the ME/CFS-type symptoms that can be produced by a jaw bone infection?

 

[anna8]

How does the above CFS and ME nomenclature discussion relate to this thread, which is about chronic jaw bone infections, and the ME/CFS-type symptoms that can be produced by a jaw bone infection?

I am so glad I came to this site and found helpful stories like ian's chronic bone infection, which I thought straight away that sounds like what I am going through. And since then he has given me some good advice, which has made me feel not so aloneI will share my story one day to maybe help someone but a the moment I am so ill to concerntrate that much...l have read some of the discussion on me and CFS and the symptoms sound the same as me but I do have facial pain as well, I think that every one should just try and concentrate on ways to get better and if that is the dentist route then please try it!

 

[peggy-sue]

Hip, it was simply because the infection produced CFS symptoms.
Not ME symptoms, but the sufferer got labelled with "ME/CFS".
Which could have been a disaster if the true cause of their "CFS" hadn't been found.
Much as it was for my friend who lost 10 years of his life to the "CFS" label. He simply needed a pacemaker.
He had heart failure. But when you get labelled with CFS, you can wave goodbye to any proper tests or medical help.

 

[Ian]

But when you get labelled with CFS, you can wave goodbye to any proper tests or medical help.

Yeah this exactly describes what happened to me. But even when I got an MRI of my jaw done, and the problem was clearly visible, I still couldn't get help because maxillofacial surgeons and dentists don't do cavitation surgery. In fact most have never even heard of the problem, let alone have any idea how to treat it.

Treatment is easy though, they simply need to open up the area and remove everything that is bad.

The problem is, dentists don't want to look at the idea of bone infections in the jaw. Because if they did they would have to wave goodbye to implants and root canals (which are extremely profitable), or at the very least make patients sign disclaimers saying if you keep these dead teeth you could become sick and die.

 

[triffid113]

Hi, Ian.

I'm glad to hear that you got to the "root" of the problem! I've heard from a couple of others who had this same issue in their jaws for a long time, and getting it cleared out helped them considerably with their CFS symptoms. I am willing to accept your CFS diagnosis, though I understand that if I were a purist using the current case definition for CFS, I would agree that if you have a known medical condition that is causing the symptoms, then it shouldn't be considered CFS. In my view, though, as we learn more, we are going to whittle away at the cases by revealing more medical conditions or adding to the list of known medical conditions, until no "CFS" cases will be left.

I would like to add my perscpective...I have genetic high blood pressure, severe genetic methylation issues, and genetic diabetes. 90% of Americans get high blood pressure and only 10% are genetic. Their high blood pressure is no less real for the fact that it had a simple cause. Nor is the diabetes of those who get it due to overweight and diet any less real. And if a jew infection causes CFS, it is still CFS and why would it be any less CFS than CFS caused by some other infection, like Epstein-Barr, or of genetic cause? Unfortunately there are often a number of causes of a single disease state, and because the common man who abuses himself can get it, most people then presume that that disease state is ALWAYS caused by not taking care of oneself. (arghghgh!)

 

[Whit]

So patients with MS have CFS because they have similar symptoms?

 

[peggy-sue]

CFS symptoms can be caused by ME.
CFS symptoms can also be caused by chemotherapy.
I have ME, but I do not have "fatigue", I do not really have all the "normal" CFS symptons at all.
I'm hyposommniac, not hyper. My body simply does not DO anything aerobic, that's NOT fatigue.

A syndrome is a collection of symptoms. No more.

Vomiting and diarrhoea are two symptoms which often occur together.
They could be considered to be a syndrome.
But the cause could be anything from food poisining to norovirus to a bad hangover.

 

[Whit]

I said MS, not ME.

 

[Ian]

http://www.melisa.org/ms-multiple-sclerosis.php

 

[peggy-sue]

Quote Whit
"I said MS, not ME. "

Doh!

But yes.

 

[Wayne]

Ian

Ian, I tried linking to your website [on the link you provided in your first post on this thread], but wasn't able to. I was wondering if it's still available. --- Thanks again for all the valuable information you've shared on this thread.

 

[Ian]

It was hosted on free ISP webspace. But the ISP cancelled the service, so it needs a new home I just have been so busy not got around to it. I will try and find it a new home

 

[bootsydan]

@Ian

Do you know if it is possible to get this condition without previously having had any dental work done?

I have had no dental work done ever, but have pain/throbbing/tingling/numbness in the jaw/ear/cheek/neck region, and am keen to look into anything that may be causing the problem.

I have also previously had a bone scan which showed nothing, but that was for my back, and am not sure if my jaw was included in that or not.

Thanks for sharing your story!

 

[Helen]

@bootsydan
Did you compare your symptoms with Lyme? It can affect facial nerves as you maybe already know.
I would try to find a good neurologist that can make a good examination.