CFIDS/CFS/ME Anybody else?

[emcguffie]

That says it all, I guess. Anybody here with CFIDS or CFS or ME, or even FM? which I believe is really part of the other one.

[lins the liberal]

1. by fm do you mean fibromyalgia?

I do have fibromyalgia. Finally, I think I am beginning to accept it.

[emcguffie]

2. Yes.

Nowadays, they seem to be saying that FM is separate from CFIDS. They used to say they were connected, or some said they were one and the same. Then they said most people who have FM have it as a result of having CFIDS. Now, I don't know.

I have them both, and I think FM is CFIDS. But of course I could be very wrong. But the widespread pain, the aching all over, I really believe is due to CFIDS. Not the localized aches and pains, and the tedonitis and the trouble with joints and ligaments and nerve pain. I think that's all FM.

Are you very tired? Do you have what they call post-exertional fatigue?

[lins the liberal]

18. That is interesting

I do have post exertional fatigue. I have days of aching all over. In fact I thought the all over muscle aches was a symptom of fibro. I also have degenerative disk disease and I've been told that the fibro makes the back pain worse. And too, some days I am just so tired I don't know how I am still alive. I can't remember the other symptoms of CFIDS, but seems like low grade fever is one? I haven't had that.

Also have arthritis in my knees. Went off of wheat last June to see if that would help my knees. Went back on wheat in about 4 weeks and discovered that my stomach cramps returned with a vengence. Ever since then, if I have much wheat...I mean like even 1/2 slice of bread I get stomach cramps.

[T Mexelbry]

3. sudden onset CFIDS 1998

and yes, I have the post-exertional fatigue thing, too.

[Boudica the Lyoness]

4. Yep.

I have a disease called sarcoidosis. One of the worse symptoms of my version of sarc is the severe chronic fatigue, joint, muscle pain and inflammation. My doctor called my muscle pain 'Fibromyalgia'.

I find that keeping as active as I can, avoiding wheat, processed foods and preservatives, helps. There is no cure and the treatments can do more harm than good.

I've been lucky, so far, because my docs give me good pain meds and adderall for the fatigue. I try my best to take as little meds as possible but it's great to be able to feel normal every now and again.

How are you coping?

[emcguffie]

5. I've been sick a long time, and not doing so well.

But now I'm mostly worried about my daughter, who is a senior in high school.

I'm on disability, and we don't have enough money to get by. I think I want to work, but whenever I get up and do anything, like go to the supermarket or go shopping, or cook a big meal, I end up in bed for about three days.

I'm transcribing a recent conference on CFS/ME/CFIDS, and there is some interesting info in it. I haven't been keeping up with the research lately. But there is a school of thought, which may turn out to be the right one, that this disease is caused by exposure to a toxin, called the ciguatera epitope (because it is very close to the ciguatera toxin found in some ocean critters) and low level, background radiation, the kind probably left behind after all the testing that was done. This kind of makes sense to me because it could explain why the US government is so devoted to covering this disease up.

They've really been terrible about it.

I'll post what I find out that's interesting.

[Boudica the Lyoness]

6. Thanks for the info about the ciguatera epitope.

I'm going to be doing some reading about it. I want to know the reason I have become so ill. What amazes me how little is known about my disease and that there is no cure. I'm looking forward to hearing from you.

[T Mexelbry]

7. thanks, emcguffie.

I'll want to read this, and especially among those who know that a trip to the grocery store can really take three days.

[emcguffie]

8. No kidding!

I should have developed a support system years ago, but I didn't.

Geez, it is terrible, and how could anybody possibly understand that going to the grocery store puts you in bed for 3 days? That's crazy! But that's what it does.

There is so much back story to this thing, it is quite disgusting. I did lots of research on it years ago, just enough to figure out the government is doing everything it can to stop us from figuring it out.

The US has gone to a lot of trouble to convince the UK and Australia and NZ to change the name of ME to CFS, and to treat CFS as a psychological illness. Like, hey, we're all crazy.

But there's just too much research that says that's not the case.

However, I was under the impression that they did indeed implement the name change in UK. And they shut down some really promising research. They shut down real research, and then fund research into its being caused by us being depressed or something.

Dr. Natelson in NY is collecting lots of evidence that it sure as hell isn't depression. That's a bit of good news.

More to come.

(I've been away and with computer problems. Need to sleep now,, I think.)

[emcguffie]

9. I actually tried an alternative cure for sarcoidosis.

Turns out it was very bad for me. But it could be not bad for you, as you actually have sarcoidosis. I don't know. This was a very extreme effort to reduce your vitamin D load. Have you heard of that?

[mopinko]

10. fibro kicked off by west nile virus

although somewhat present all my life, the fatigue really got me after that.
taking lyrica, which has helped the pain. taking cymbalta now, and still trying to decide about it. great for my mood, but bouts of drowsiness that i do.not.need. seems to be helping painwise, also, tho. going to try to back out the lyrica before i make up my mind.

and yes, the exercise intolerance is so frustrating. try to build yourself up, but it just does not seem worth the effort. and hour in the gym, and that's my day. sucks.

[emcguffie]

14. YOu have to be really careful about the exercise.

I think it is really bad for you.

THere's been na lot of back and forth about it, but the other side is bullshit, as far as I'm concerned. Same government types that shut down serious research.

And if you DO exercise, you're supposed to do it under careful supervision of someone who knows how to judge your limits. You're supposed to establish that by exercising until you're tired, and then never doing more than something one-tenth of that.

Find a way to do just enough to maintain your strength, but any more and you are seriously harming yourself.

The only people who ever seem to get over this disease are the ones who basically go to bed when they get sick and stay there for a few years. People like me, who keep going, exercising, tryhing -- we never get better. I've been mostly in bed now for years, and it's all still going downhill.

Although, there are some symptoms that have gone. Muscle weakness is much better. But I can't do anything. Honestly. Can't clean up my room. Forget about it.

[condoleeza]

11. Family health history is important to consider when dx/wFM

After a lifetime of odd illnesses that didn't seem to have a pattern, and being dx/w FM, RH - you name it, 2 years ago I was finally genetically tested and also had a stool test to see what my body was reacting to. Turned out for me that I am gluten sensitive. Since my test, my daughters and grandchildren have also been tested. We all share one same gene identified as gluten sensitive and all have a different second gluten sensitive gene.

In looking back at family history this should have been obvious to any doctor who took the time to read our history - they don't take the time to do it. From my experience we all have to be our own doctors. So far the only toxins I appear to react to are gluten and tapioca. After being gluten free for about 6 months almost all my health issues disappeared just prior to my turning 60. I still have joint damage caused by years of a hyperactive autoimmune response, but am free of almost all other symptoms that go back to early childhood. Eliminating gluten was the only "drug" I needed.

It is nothing short of miraculous, frankly. My littlest grandson was dx/w Crohns at 14 months - 8 months ago, I am so grateful that at least he knows now and won't have a lifetime of illness.

Nearly all research done on this has been done in Northern European countries which have national health coverage. When the drug companies fund research and there is $ to be made from chronic illness, there is little incentive to find a cure.

[emcguffie]

15. For me, it hasn't helped. It has helped, but not the CFIDS.

First I found out I had chronic obstructive sleep apnea. I use a mask now, and I would never go without it, but I still have CFIDS and FM.

Then I found out I was gluten intolerant/celiac. Gave that up. I was actually dying there for a while, when my digestion wasn't working. Got down to 90 pounds or less, I shook all the time, couldn't think straight, jumped at the slightest sound -- and that was due to vitamin deficiencies, which were due to celiac disease.

Now, I am also intolerant of corn and corn products, and boy, they are everywhere. Try giving up wheat and corn. Corn oil, corn starch, corn syrup. If there's no wheat in it, chances are there's some corn in it! Apparently there's a protein in corn that resembles gluten. So some people develop a cross-sensitivity. It does the same thing to me that gluten does.

So, here I am, still with CFIDS and FM. Maybe it just went on too long for me.

[Warpy]

12. FM associated with a whole alphabet soup

of autoimmune diseases here. I have no long I've had it, I can't really remember not living in pain.

[emcguffie]

17. There are pain docs who will give you pain meds.

Took me years to find one, but I did. It helps.

[We are Devo]

13. CFS and Fibro. here!

I'm 47 and I can't remember not being tired either! I take Cymbalta, I think it helps. My doc wants me to exercise but I get exhausted so easily. I feel better when I'm off gluten. With the holidays it's been hard, I plan to get off of it again early next year. I'm also a highly sensitive person (see Elaine Aron's work), and I hate noise, crowds, bright lights, having too many things going on at once in my life, etc. Lots of quiet rest and sleep are a must for me. Trying to live a low-stress life too, helps. Not easy though.

[emcguffie]

16. I might get in trouble for this.

Last edited Wed Dec 21, 2011, 03:06 PM - Edit history (1)

BUt if you have a doctor that really wants you to exercise, find another doctor. [I'm editing to point that of course I am not qualified to give medical advice. But let's just say I've lived with this for a very long time, and I've done a great deal of research. And so this is just my opinion...]

There's a cover-up of CFS in this country and in the world. There's legitimate research that they try to shut down. Part of this effort has centered on making us all look bad and look like we're "too stressed out" or psychologically susceptible or some other nonsense. There's a physical cause, and somehow the government is responsible, and they don't want it figured out.

There is a school of thought that it's partly caused by left over radiation from all the atomic testing. I think they might be right. there's a veritable epidemic of CFS in the South Pacific.

Exercise is bad for people with CFS because your mitochondria, where energy is produced, do not work correctly. When you use up the energy you have stored in ATP, which you do not have enough of, your body starts breaking down the ADP. Then, you have to spend days recuperating while you make the ADP that your body broke down as emergency energy supplies.

If you do have to exercise, do not do anything aerobic. Do very mild strength training.

This is just my opinion, mind you. But it is based on a lot of experience with this disease.

And find a doctor that knows about it.

Years ago, I went to Dr. Benjamin Natelson in Newark. He diagnosed me. But, at that time, he believed it was caused by stress. I found another doctor. But Dr. Natelson has done lots of research, and he has now changed his mind. Too bad for me, he's in New York now. He's a neurologist, and he says it is clearly a neurological illness.

HE's recently done studies that pretty much rule out depression as a cause, as well. Thank you. Dr. Natelson. We're not depressed. We might feel depressed because we're so sick, but we're not sick because we're depressed, because we actually are not clinically depressed. So there.