Extreme exhaustion?

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by seireiofhope, Apr 5, 2011.

  1. seireiofhope

    seireiofhope New Member

    I've been diagnosed for almost two years now, but have had symptoms for 4, and I have never been this tired in my life. I sleep for about 11 hours a night (waking up often, but still in bed and asleep for most of the time) and take a 2-3 hour nap during the afternoon, but I am still so tired I am having trouble functioning. Up till three weeks ago, my main concern was slight fatigue but mostly just pain. Then three weeks ago I just got hit with this exhaustion and I can't make it go away. Does this sound like my fibro is just progressing, or something else? I have been getting a lot of headaches lately too, and have been kind of dizzy. Help?
  2. Janalynn

    Janalynn New Member

    Hi - I haven't been on here in a while, but used to be quite often. My main symptom of Fibro was always severe DAILY pain, but I can now say that my Fatigue (EXAUSTION) ranks right up there with what ails me. It is way beyond being tired of lacking energy.

    It is not clinically Chronic Fatigue Syndrome I don't believe, but it is Chronic Fatigue, something my Dr.'s have always written on my medical records after each visit. My fatigue has gotten progessively worse over the past 18 months or so.

    What is frustrating is that even some people with Fibro don't even understand the severity of the Fatigue. I have the post-exertion malaise. So even very low amounts of activity can absolutely wipe me out, sometimes for days. For instance, I took a shower, cooked dinner, had my son over to eat, had conversation and by the time he left, two hours later, the pain set in, but it took me THREE days to recover physically from that day's activities. That is simply ridiculous and very frustrating.

    While exercise of at least some kind is recommended for Fibro, for those of us suffering from Chronic Fatigue (not CFSyndrome necessarily), even 6 minutes of activity can make us 'pay for it' for days sometimes. I have to now think about every single thing I do, allowing days to recover. I rarely do anything anyway - haven't been out to a store since Christmas and that was only for a couple of hours. I don't grocery shop, don't visit friends........... Forget showering the same day I have to do anything, it's way too much for me. Some days I have to laugh or I'd cry. It just seems ridiculous as I said previously.

    I have terrible headaches as well. Also I get dizzy or dont have great balance when I stand sometimes.

    I am very careful and picky about which websites I visit because there is so much misinformation out there, but surprisingly I found some decent info on about.com regarding Fibro and fatigue. I put in Fibromyalgia symptoms, it has a lot of different articles attached. Good reading, which is sometimes far and few between.

    Basically progressing? I don't know, but changing? possibly. You're certainly not alone.

    Janalynn
  3. Janalynn

    Janalynn New Member

    Hi - I haven't been on here in a while, but used to be quite often. My main symptom of Fibro was always severe DAILY pain, but I can now say that my Fatigue (EXAUSTION) ranks right up there with what ails me. It is way beyond being tired of lacking energy.

    It is not clinically Chronic Fatigue Syndrome I don't believe, but it is Chronic Fatigue, something my Dr.'s have always written on my medical records after each visit. My fatigue has gotten progessively worse over the past 18 months or so.

    What is frustrating is that even some people with Fibro don't even understand the severity of the Fatigue. I have the post-exertion malaise. So even very low amounts of activity can absolutely wipe me out, sometimes for days. For instance, I took a shower, cooked dinner, had my son over to eat, had conversation and by the time he left, two hours later, the pain set in, but it took me THREE days to recover physically from that day's activities. That is simply ridiculous and very frustrating.

    While exercise of at least some kind is recommended for Fibro, for those of us suffering from Chronic Fatigue (not CFSyndrome necessarily), even 6 minutes of activity can make us 'pay for it' for days sometimes. I have to now think about every single thing I do, allowing days to recover. I rarely do anything anyway - haven't been out to a store since Christmas and that was only for a couple of hours. I don't grocery shop, don't visit friends........... Forget showering the same day I have to do anything, it's way too much for me. Some days I have to laugh or I'd cry. It just seems ridiculous as I said previously.

    I have terrible headaches as well. Also I get dizzy or dont have great balance when I stand sometimes.

    I am very careful and picky about which websites I visit because there is so much misinformation out there, but surprisingly I found some decent info on about.com regarding Fibro and fatigue. I put in Fibromyalgia symptoms, it has a lot of different articles attached. Good reading, which is sometimes far and few between.

    Basically progressing? I don't know, but changing? possibly. You're certainly not alone.

    Janalynn
  4. IanH

    IanH Active Member

    If you have FM (diagnosed) and you suffer from PEM then you have ME/CFS. People with FM but no PEM will suffer from too much exertion with more pain and some fatigue spread over days (usually 2-3 days). In addition the following symptoms may also worsen:
    diarrhea, headaches, vertigo, vision, memory, appetite and sensory sensitivity.

    Basically, if you exert yourself then crash with exhaustion, weakness and a feeling of "sickness" (like flu) then this is PEM.

    At the same time, distinguishing between FM and ME/CFS is academic for many because the FM is a symptom of ME/CFS. Also as stated, there could be underlying pathology causing your fatigue or pain ie they are not ME/CFS or "FM" and a diagnosis of FM could be inappropriate. Even today with better criteria ME/CFS is misdiagnosed.

    I notice that many people stating their problems are not stating what they take in the form of medication or supplementation. It is always helpful to know what is being taken.

    For example everyone with ME/CFS+FM should be taking the following:
    magnesium
    vitamin B12.

    I cannot see any situation where a person with ME/CFS+FM would not be taking these two supplements. There are others of course but these two are obligatory.

    [This Message was Edited on 04/24/2013]
    bct likes this.
  5. IanH

    IanH Active Member

    If you have FM (diagnosed) and you suffer from PEM then you have ME/CFS. People with FM but no PEM will suffer from too much exertion with more pain and some fatigue spread over days (usually 2-3 days). In addition the following symptoms may also worsen:
    diarrhea, headaches, vertigo, vision, memory, appetite and sensory sensitivity.

    Basically, if you exert yourself then crash with exhaustion, weakness and a feeling of "sickness" (like flu) then this is PEM.

    At the same time, distinguishing between FM and ME/CFS is academic for many because the FM is a symptom of ME/CFS. Also as stated, there could be underlying pathology causing your fatigue or pain ie they are not ME/CFS or "FM" and a diagnosis of FM could be inappropriate. Even today with better criteria ME/CFS is misdiagnosed.

    I notice that many people stating their problems are not stating what they take in the form of medication or supplementation. It is always helpful to know what is being taken.

    For example everyone with ME/CFS+FM should be taking the following:
    magnesium
    vitamin B12.

    I cannot see any situation where a person with ME/CFS+FM would not be taking these two supplements. There are others of course but these two are obligatory.

    [This Message was Edited on 04/24/2013]
  6. kbak

    kbak Member

    Hi,
    It's very possible you have CFS (chronic fatigue). CFS is known for it's extreme exhaustion, where fibro is know for it's pain. Of course you can have both, I do.

    There isn't much you can do for the exhaustion except to rest and hope you get a break from it. I find mine goes in cycles. There are times I'm not as fatigued as others.

    If I try to push when I'm really exhausted it just makes me 10 times worse. It's really hard to find anything that really helps the terrible fatigue. If anyone else has suggestions I'd be interested also.

    Take care,
    kbak
  7. kbak

    kbak Member

    Hi,
    It's very possible you have CFS (chronic fatigue). CFS is known for it's extreme exhaustion, where fibro is know for it's pain. Of course you can have both, I do.

    There isn't much you can do for the exhaustion except to rest and hope you get a break from it. I find mine goes in cycles. There are times I'm not as fatigued as others.

    If I try to push when I'm really exhausted it just makes me 10 times worse. It's really hard to find anything that really helps the terrible fatigue. If anyone else has suggestions I'd be interested also.

    Take care,
    kbak
  8. kch64

    kch64 New Member

    Hi. You're experiencing more of the illness. It's part of the disease process. Don't dismay. There are times when your energy will feel more normal (mine never feels 100%).

    My suggestions are:
    - Make sure to find a doctor who can look at your thyroid and really know how to treat thyroid issues.

    -Try a product sold here called NADH. It helps me when I'm really sagging in energy. It's a tiny little pill you take once in the morning. It really is a good product.

    -Check your iron levels. Low iron can add to the burden on your body.

    We all know how bad it can be, so you're not alone. You may also swing to the other point, which is your exhausted, then all of a sudden, your having insomnia, even though you are so tired. That's what's happening with me right now.

    Hope you start to feel better soon.
    Kendra
    spacee likes this.
  9. Bunchy

    Bunchy New Member

    Sounds like a relapse to me - hopefully you will improve again with time.

    I get periods like you describe with dizziness and extreme tension pounding headaches too. I hate the dizziness especially as mine often represents as vertigo :(

    The degree of exhaustion waxes and wanes - sadly this illness does that a lot. It is a hallmark of CFS/ME.

    Are you able to take some time to just completely rest up for a few days or weeks?

    Sometimes I just have to let everything slide when this happens until I recover enough to resume essential functioning.

    Hope you feel better soon.

    Hugs,

    Bunchy x
  10. gapsych

    gapsych New Member

    I know exactly what you are talking about.

    Have you had a sleep test? I think everyone with our DD should have one as sleep is so closely tied with pain and exhaustion.

    I was experiencing worse than normal symptoms similar to yours, had a sleep test and have Obstructive Sleep Apnea. I was shocked. I also have Restless Legs Syndrome.

    Now that this has been addressed, I do feel a bit better but as my sleep neurologist told me I still have the FM, so unfortunately will not clear up all of my symptoms.

    This may not be the case for you but if you haven't had a sleep test, one might be in order. If nothing else it can show how disruptive your sleep is.

    Good luck and let us know how you are doing.

    gap

    ETA How long has it been since you have had a through physical with blood tests?[This Message was Edited on 04/05/2011]
  11. jole

    jole Member

    Last summer I seemed to be better, then about November it hit again. The pain stays...always, and the fatigue. But this is so much worse! Total exhaustion to the point of not even being able to shower some days. My thyroid is fine. But I just can't shake this. Plus I'm having more heart palpitations also. My kids were home a couple weeks ago, and I'm still not rested from that.

    Everything seems to take way more energy than I have. It's too exhausting to visit on the phone. some days too exhausting to watch tv. I had hoped when spring got here with warmer weather it would ease up, but I'm not seeing it yet. So I think I was just lucky to have a 'better' summer last year, and this is back to stay awhile. Doesn't mean I like it though.

    Wishing you well....and if you find anything that helps, please let me know, okay? I've tried everything. Hugs......Jole
  12. 3gs

    3gs New Member

    I dont think my exhaustion has been this bad ever. It hit about a month or so ago. (along with headaches!) too the point where all of a sudden its lie down right now.

    only thing I can think of is Im in a bad flare.
  13. seireiofhope

    seireiofhope New Member

    I have had a butt load of blood tests done recently. My thyroid is fine. I was a little anemic a few weeks ago, but they think it was just because of my period. They did an ecg and a few more tests on monday, so we will see if anything comes back from that.
    And now i am having lots of pain set in, so I think it is just my fibro.
    I don't really have time to just sit back and relax. I have a part time job and I am going fulltime school (even though I am about a month behind now) and that is making my stress worse. I really want to finish my school (only an 8 month program) but as it is, I don't think I can. So I hope this clears up soon!
    I hope that everyone else is feeling better :)
  14. Nanie46

    Nanie46 Moderator

    Hi,

    Sorry that you are feeling so exhausted and sick.

    In order to have the hope of getting well, it is necessary to find the cause(s) of your symptoms.

    Dr's will not bother doing this for you. They want to "solve" your problems by giving you a diagnosis like FM or CFS and thinking their job is done.

    Trouble is, those diagnoses have "no known cause", so you will never be properly treated for the CAUSE and not get well.

    Common sense tells us that something caused your symptoms.

    You just have to find it.

    Many, many people on this site who were diagnosed with FM or CFS, later found out that the cause(s) of their illness/symptoms was infectious.

    Many of those people found that the complex bacterial spirochette, Borrelia burgdorferi (lyme) was one of the offending infections.

    Many people also had Babesia, Bartonella, Mycoplasma, Ehrlichia, etc.

    These infections are often found together.

    Your symptoms of extrreme exhaustion, pain, headaches, dizziness, etc are some of the most common symptoms of these infections named above.

    99% of Dr's do not know how to recognize these chronic infections.

    They also rely soley on a lab test to rule out these infections, which is very wrong.

    The lab tests are unreliable.

    Please consider that you may have one or more of these infections.

    Do your own research, like I did.

    Consider getting a western blot IgG and IgM (test #188 and #189) from Igenex lab in CA.

    www.igenex.com



    Here is some important information for you to read:


    In the following paper, western blot info is on p 7, symptom list is on p 9-11, and Coinfection info about Bartonella, Babesia etc is on p 22-27:


    http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf



    http://www.ilads.org/lyme_disease/about_lyme.html


    very simple to read and thorough booklet:

    http://www.lymepa.org/Basics2007v1.2Rev.pdf



    http://www.lymedisease.org/lyme101/lyme_disease/lyme_disease.html


    I hope you get some answers and can recover.
  15. lvjesus

    lvjesus Member

    It could be sinus (sorry if someone else said this, didn't read all posts). Once upon a time I had dizziness EVERY afternoon and after about 2 weeks I had made a doctor's appointment but before it came around, I thought about the sinus angle, went home and tried my saline spray and BINGO! problem solved...

  16. shari1677

    shari1677 New Member

    I was diagnosed with FM maybe 4-5 years ago. About 3 years ago, I had a relapse. Spent 6 weeks in bed with extreme exhaustion like you say.

    I never did recover 100%. Since then, I spend the majority of my time in my PJs, much too tired to do anything but watch TV. I am fortunate enough to have a full-time job AT HOME that is extremely flexible.

    The only time I leave my house - is to get groceries - maybe 2 times a month.
  17. torner61

    torner61 New Member

    I have chronic sinusitis and when it flares up, I get hit with dizziness, headaches, heart palpitations, mild chest pain, sweating, and exhaustion. I ended up in the ER twice last week because of the combination of these symptoms, and the second time I was admitted in the ICU because they thought I was having heart trouble. They did a full cardiac work up and they ruled out any heart trouble. The doctor suspected a possible tumor in my adrenal gland, but that was ruled out as well. After some research and meditation, I have come to the conclusion that it was my sinus infection that caused my symptoms. So I would ask a doctor if you have developed a sinus infection and/or chronic sinusitis.
  18. alyssalyn

    alyssalyn New Member

    Nutritional powerdrink might help. Severe exhaustion and need for a lot more sleep can come from needing more nutrition. I found that a good diet really helps BUT that liquid nutrition absorbed much better and faster.

    Search in Google for Superfoods. There's this famous doctor guy with herbdoc that invented a Superfoods drink.

    also green chlorophyll drinks made from barleygrass can help.

    More protein in the diet can help with exhaustion, stamina boosters such as American Ginseng, fresh air.

    Also if you can't poop well this can cause exhaustion. Straightening out bowel function can help all around.
  19. alyssalyn

    alyssalyn New Member

    When the tests can't find it, but the hypothyroidism is still there, it is called subclinical hypothyroidism.
  20. alyssalyn

    alyssalyn New Member

    Have you tried a food elimination diet to see what is causing your chronic sinusitis?

    Here's what will cause mine:

    1. Pasta, especially spaghetti.
    2. Wheat, generally, except Ezekiel Sprouted Bread
    3. Oatmeal
    4. Rice
    5. Spelt
    6. Sugar
    7. Other sweets
    8. Most milk (except a brand that is only lightly pasteurized and not homogenized).
    9. Russett potatoes
    10. Having too many potatoes too many days in a row


    [This Message was Edited on 04/10/2013]
    [This Message was Edited on 04/10/2013]