Anyone with fibromyalgia?

I have a question I hope someone can help me with. I've had fibromyalgia for years, and in that time I've done alot of research on it, partly looking for new helps out there, and partly to see if my symptoms are what's considered normal. I've read enough to know that fatigue is a big one, but here's the thing. The fatigue, when it hits, is very sudden. Like, I'll be just fine, and then this weird feeling just kind of washes over me, and suddenly I am completely exhausted. When this happens, I have to lay down. Sitting down won't do; I have to LAY down, which is usually followed by me falling asleep. When I wake up, I am very foggy, like being drugged. It takes at least a half hour to really feel awake. Is anyone else like this? It's very annoying. I've lost whole Saturdays because of this, and I really value my weekends.

Thanks in advance!
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I don't have fibro, but several family members do. What you describe is pretty common to one, especially as she has entered retirement age.
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Have you looked into other things that often go hand in hand with fibro?

Have you ever checked your blood sugar and/or blood pressure when you're feeling this way? (glucose meters can be obtained free by anyone, strips can be purchased on ebay, and doing the readings are super easy).

Have you looked at your diet in terms of what you ate (high carb?) before this fatigue hits (immediately/hour or two before?)

Just some things to consider... if they are the culprit then it can be fairly easy to fix!

Hope something gets resolved, that kind of fatigue is debilitating not to mention depressing....
RebeccaK, I never thought of the sugar thing. I have to get regular checkups with bloodwork, so if that's the case, it came along very recently. But it's worth checking into. I do eat alot of carbs.

Ewenique, really, you have family members who do this? That's too bad. I hate to hear of anyone else dealing with this. I just wondered, cos I thought fatigue was something that comes on gradually, or I'd wake up feeling that way for a day. But to be fine one minute, then completely exhausted so suddenly, that's just weird. But I guess that's just how it is.

Thanks to you both!
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Have you ever had a glucose tolerance test? Is it possible you're experiencing fairly quick drops in blood sugar? Do you feel better if you eat something?

I hope you're able to resolve this... sometimes you have to 'be your own doctor' and do the research and investigation on your own before bringing it to the doctors. =)
I had one years ago, but not recently. No I don't have to eat for this to happen, or go without eating. It just seems to happen whenever. Strange. But I'm due for my annual checkup, so we'll see what the doc says. I just like asking people who actually HAVE the problem. I learn so much that way. I've gotten more info on thyroid issues here on this site than in my doctor's office!
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Good luck to you! I have resolved many of my own medical problems much in the same way - checking into forums where people talk about their own issues. Hang in there!
I was diagnosed with Chronic Fatigue Syndrome in 1993 and just recently spent the most of June in bed with fatigue, myalgia, fever, swollen glands, and headaches. My myalgia starts very suddenly and moves throughout my body. For example, one day my right arm hurts, then later the same day the pain moves to the left leg --then later to somewhere else. The first doctor I went to (in 1993) just thought I was a hypochondriac --until my liver levels showed elevated. It took 6 months to get over that episode.

For a while after the initial episode, I could not drink alcohol without the myalgia returning. I don't think my liver could handle it. Has your doctor checked your liver levels?

ETA: The fatigue hits very suddenly just as you described. Even though I'm feeling better now, I still have to lay down and rest every afternoon.

Last edited by veganyogini; 07-27-2010 at 10:23 AM.
Yes, I get my liver levels checked every eight weeks, because I have rheumatoid arthritis, and I'm on methotrexate for it, which tends to be hard on the liver, so my rheumatologist keeps a sharp eye on my liver levels.

Wow, you really understand! Thank goodness, although I hate to think how miserable you'd have to be to understand this. I take it you're better than you used to be?

I don't get to lay down, but I do have a desk job, so there are times I can at least lay my head down. Not for long though!
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You might want to go to www.dailystrength.org.
The site has a support group for people with this condition.
Thanks! I'll definitely check it out.
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What you described in your first post happens to me all the time. I hate it, but there isn't much you can do about it. It's just one of the many symptoms we have to deal with, so I try not to get anxiety over it.
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I understand your frustration with the fatigue also. I was diagnosed March '99. It's just part of the illness. I feel foggy also after a nap, which I do every afternoon. But after 20 or 30 minutes I feel better and can go on with the rest of my evening. You have to do whatever you need, to make your pain and fatigue subside. No matter what! There isn't anyone that knows what this illness can do to one's body and mind more than us. I wish you all the luck. Ruth
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Do a search at drmikin.com and you'll find some really interesting articles about both fibromyalgia and chronic fatigue syndrome.

It is possible that some people with these symptoms actually are suffering from a Mycoplasma infection. This tiny bacteria in not able to survive long enough outside the body to be cultured so no standard tests find it. Mirkin cures 25% of his patients with long term antibiotics.

And this is also curing rheumatoid arthritis!
Do a search at drmikin.com and you'll find some really interesting articles about both fibromyalgia and chronic fatigue syndrome.

It is possible that some people with these symptoms actually are suffering from a Mycoplasma infection. This tiny bacteria in not able to survive long enough outside the body to be cultured so no standard tests find it. Mirkin cures 25% of his patients with long term antibiotics.

And this is also curing rheumatoid arthritis!
Originally Posted by SusieSuze
Autoimmune Disorders:

An autoimmune disorder is a condition that occurs when the immune system mistakenly attacks and destroys healthy body tissue. There are more than 80 different types of autoimmune disorders.

Causes
Normally the immune system's white blood cells help protect the body from harmful substances, called antigens. Examples of antigens include bacteria, viruses, toxins, cancer cells, and blood or tissues from another person or species. The immune system produces antibodies that destroy these harmful substances.

In patients with an autoimmune disorder, the immune system can't tell the difference between healthy body tissue and antigens. The result is an immune response that destroys normal body tissues. This response is a hypersensitivity reaction similar to the response in allergic conditions.

In allergies, the immune system reacts to an outside substance that it normally would ignore. With autoimmune disorders, the immune system reacts to normal body tissues that it would normally ignore.

RA is an autoimmune disease like MS, Lupus, Type 1 diabetes, among several others. Some autoimmune disorders can go into remission, but not cured.

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Yes, I get my liver levels checked every eight weeks, because I have rheumatoid arthritis, and I'm on methotrexate for it, which tends to be hard on the liver, so my rheumatologist keeps a sharp eye on my liver levels.

Wow, you really understand! Thank goodness, although I hate to think how miserable you'd have to be to understand this. I take it you're better than you used to be?

I don't get to lay down, but I do have a desk job, so there are times I can at least lay my head down. Not for long though!
Originally Posted by curlyinohio
I have RA also, the methotrexate can also cause that type of fatigue and so can anemia which most people with RA have. Have your vitamin d levels checked as well. Good luck I know how it feels.
That's right, these are called autoimmune diseases.

If you remove the bacteria that the body is fighting (mycoplasma), your immune system can stop fighting. The antibiotic therapy works best if initiated early in the infection.

Most doctors will stick with old theories until new ones are proven beyond a shadow of a doubt. This can take 20 years like it did with stomach ulcers. Remember, they used to be caused by stress? Mirkin reported the finding of helicobacter pylori back in the early 80's and was curing people with antibiotics back then. The medical community did not accept antibiotic treatment for stomach ulcers until the late 90's. That's nearly 20 years of suffering for hundreds of thousands of people because of assumptions that bacteria couldn't possibly live in the stomach.

The point is that we don't know everything and just because you can't find an infection with a standard lab culture, doesn't mean you don't have one. Mycoplasma is found in the joints of people with RA. It is only found with a live test-- the sample must be analyzed immediately after being biopsied.

Mirkin's hobby is to read all the major medical journals that are published every month. These journals contain all the results of all the research from all over the world. He's been doing this for 30 plus years. His advice cured my husband's ulcer and cured an embarrassing problem I had I won't go into detail about. I lost 40 pounds in 6 weeks on his diet way back after my first son was born. I trust his knowledge because he's helped me so much and he makes so much sense!!

Wondering why the hell I'm waiting to go back on his diet, lol.

Last edited by SusieSuze; 08-23-2011 at 10:40 PM.
Antibiotics have helped some people with RA, you can look up the roadback foundation as well, they advocate long term therapy with minocycline. But they don't work for everyone. Do your research beyond one site, antibiotic therapy has been studied in major medical journals as well. For some people it helps symptoms but has not delayed joint damage. I know people doing that and also on traditional routes. Alot depends on the reason you may have developed ra. Also, many bacterial and viral infections (like Lyme disease) can have arthritis symptoms, so I am a strong advocate of journaling symptoms and testing for everything. One thing however, if you have to keep taking something, it is not a cure, has he published the results of what happens when people go off? Thanks for the info.
A new treatment for some of the chronic 'autoimmune' type disorders like Crohn's disease is ingestion of parasitic worms!

Apparently, we are built to live a dirty life, and our immune system depends on the attack of worms to keep it in check. Because the body fights the worms, it no longer fights the lining of the intestine and the horrible bleeding and cramping stops for the sufferers of this horrible disease. Pretty amazing, eh?
I have a question I hope someone can help me with. I've had fibromyalgia for years, and in that time I've done alot of research on it, partly looking for new helps out there, and partly to see if my symptoms are what's considered normal. I've read enough to know that fatigue is a big one, but here's the thing. The fatigue, when it hits, is very sudden. Like, I'll be just fine, and then this weird feeling just kind of washes over me, and suddenly I am completely exhausted. When this happens, I have to lay down. Sitting down won't do; I have to LAY down, which is usually followed by me falling asleep. When I wake up, I am very foggy, like being drugged. It takes at least a half hour to really feel awake. Is anyone else like this? It's very annoying. I've lost whole Saturdays because of this, and I really value my weekends.

Thanks in advance!
Originally Posted by curlyinohio
I have fibro and lupus. Your reaction is very common! I refer to it as I've hit a wall or someone turned my switch off.
The brain fog after a nap is likely due to weird cycling during sleep.
It's thought that fibro is caused by a sleep disorder. Our bodies need proper sleep and when our bodies don't get it, things break down. Sleep affects every part of our bodies- everything!

There's some great info at endfatigue.com
The doctor himself has/had a CFS/FMS type disease and has done a ton of research. Great info. He also recommends supplements and certain protocols. I've used several of his suggestions and they are very helpful. Definitely worth checking out.
For me, the fatigue is part of the worst because it makes functioning difficult, my brain doesn't work right and I feel worthless because I'm not working or in school. Difficult to work or go to school when you can't remember what you just read or heard.
Hang in there!

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