Extreme weakness

Discussion in 'Fibromyalgia Main Forum' started by hermitlady, Feb 25, 2012.

  1. hermitlady

    hermitlady Member

    I haven't posted here in awhile, but I do keep checking in. I'm convinced that my FM/ME is progressively getting worse. It seems the last year has been one constant flare up, fatigue and weakness is the worst of my symptoms. I am so fed up!

    I just had the flu for a couple of wks, even with taking Tamiflu starting on the second day I was sick. I took it for the 5 day cycle they rx. I think it lessened the symptoms somewhat, I had 2 really bad days w high fever and then just continued to deal w the cough, stomach issues, etc. I am sure I'm still weakened from this, but I was so incredibly sick and weak before I got the flu that I don't know what is going on.

    I have been in a constant hunt along w my doc to try and find something to make me feel better. I'm about to do a day long saliva hormone test kit, I am dealing w perimenopause (no period in 5 mos now).

    Also, just started taking T4 and T3 thyroid meds 25 mcg each. I'm within the "normal" range on bloodwk, but doc says sometimes people still need meds. I've read that Thyroid meds sometimes help w FM and fatigue...alot of the symptoms of Hypothyroid are the same as FM/ME . So who knows, I've only been taking the T meds for a week now.

    I am feeling desperate, so discouraged, unable to get myself stronger no matter what I seem to do. Practically every med I've tried has not helped. I still take Prozac, Trazodone and Ativan...have taken these for several yrs. Tried some new ADs last summer and fall with too many side effects. Evil things these medications...my body always protests!

    I've had Adrenal testing done, with normal results of course. I feel like life is being sucked out of me on a daily basis, weaker and weaker. Hardly any good days for months now.

    I have a ton of supps I take off and on as I can tolerate them, problem is they cause serious GI problems for me. I try to eat healthy, get enough protein, fluids, etc but nothing seems to matter. All I can do is lie around and rest most of the time.

    I have very limited energy, so have to do small tasks and then rest. If I do too much, I get so ill that I almost faint. Then all I can do is lie down and hope to recover. This happens EVERYDAY of my life...if you can call it a life!

    So, if anyone has any words to boost my spirits or any ideas to get some strength back in my body, please sound off. I know it's hard to keep answering the same types of posts, but I really could use some support. This board is not what it used to be as far as activity/ posting goes, but I still see some of my old buddies around.

    Thx for reading.....and I hope nobody feels as bad as I do!!!
  2. SherylS

    SherylS Member

    Have you had your B12 checked? Just had mine checked and it was low. You would think with 5 years of tests someone would have noticed this. I am doing self injections and it is definitely helping with the fatigue. The low end of the range is 200 and I was at 230. Don't let your doctor tell you it's fine if you are on the low end--in Europe their low end is 500. If you don't have adequate B12 it will throw your whole system off.
  3. hermitlady

    hermitlady Member

    I have gone thru months of at home B12 injections, but I never noticed any improvement unfortunately. I feel like I've tried nearly everything as far as supplements go. I do take at least 2000 iu D3 daily along w Carnitine, herbs recommended by my doc, multiple vit, B's, natural progest cream, etc.

    I realize I have a lot going on in my body chemistry mix right now. I'm hoping something will improve w the thyroid and hormone stuff.

    I'm sorry you're feeling just as poorly as I am Leah, no fun is it? I had a really rough day yesterday emotionally due to feeling so bad physically. Some days I just can't understand why I'm even alive, it's torture. I feel so hopeless etc, all too familiar feelings. Life is so much tougher than I ever imagined it would be.
  4. mbofov

    mbofov Active Member

    I've found a few things that have helped my energy, which I only discovered within the last year (though I've been sick for years and years). I apologize this is going to be rather long, but I don't know how to make it shorter.

    First, though, I just googled trazodone, and one of its possible side effects is FATIGUE. Why are you taking two ADs (prozac and trazodone)? Just because you've been taking something for several years does not mean you should keep taking it.

    If you're taking these for depression, you might have better results with zero side effects trying 5-htp, or SAMe, or l-tryptophan. It just seems that so many of these prescription drugs have side effects that are often worse than the condition the condition they're prescribed for. So look up "trazodone fatigue" and see what you find - it can cause a "pseudoanemnia" among other things, causing fatigue. Look at all your meds very carefully and don't rely on your doctor to inform you about all possible side effects. There are alternatives to these drugs. You may have to see a naturopath or someone similar or just do your own research, to find safer alternatives.

    It's good you're having the saliva test. I think there are a couple of different ones. I've had the adrenal stress index test. Anyways, it's a good start.

    Some things I've found to help with fatigue this past year to help are:

    1. folate, in the form of methylfolate (or Metafolin, a brand name). Folate deficiency can cause a form of anemia called macrocytic anemia - as the name implies, this causes fatigue, among other things (including digestive problems). Many people and doctors believe that folic acid, a synthetic form of folate, is just fine to remedy this deficiency. It's not. Folic acid can actually cause a folate deficiency because it can compete with folate for absorption. Many people are unable to convert synthetic folic acid into a form useable by the body (folate). Almost all vitamins and B complex vitamins however have folic acid instead of folate. Almost a year ago I stopped all folic acid and started taking methylfolate (Solgar brand) and within a couple of days my energy had picked up. I did this after reading about a B12 protocol on Phoenix Rising (see
    http://forums.phoenixrising.me/showthread.php?11522-Active-B12-Protocol-Basics - the poster, Freddd, has given permission for this link)

    Freddd posted a lot of extremely good information about the important of methylfolate (instead of folic acid). It's really worth looking at his posts, even though it can take a bit of work. His information has helped me tremendously.

    I also take 5,000 mcg. of methylcobalamin (Jarrow sublingual brand) a day. I'd been taking B12 for years, but not the the methylfolate.

    On your regular CBC blood test there's something called MCV - stands for mean corpuscular volume - if this number is high, it indicates either a B12 or folate (NOT FOLIC ACID) deficiency, or maybe both. My number was at the top of the "normal" scale so no doctor told me I might have macrocytic anemia. But I am sure I did, because my energy picked up almost immediately on the methylfolate.

    But it is very important to take BOTH B12 and folate, not just one of them. Taking just folate can hide a B12 deficiency.

    2. Potassium deficiency - the methylfolate caused a sudden need for more potassium as my body started to improve, as Freddd explains in the above link. After a couple of days of increased energy I hit a wall, had severe fatigue, which thanks to Freddd's post, I found was due to low potassium.

    I had been doing Richvank's methylation protocol but had more energy doing Freddd's on phoenix rising (above website).

    The fatigue which I hit after a few days on Freddd's B12 protocol was familiar - and I realized that I'd had symptoms of low potassium before, but didn't know what it was - just thought it was another CFS symptom. I'm still taking extra potassium and have not had that particular fatigue since.

    My potassium levels, although in the "normal" range, were at the bottom of the normal range. No doctor ever pointed this out to me, but it's crucial information. If your potassium is low, you may very well be exhausted, with additional digestive problems to boot, even if your potassium levels are still in the normal range.

    3. The third thing I found to help with my energy was B6 in the form of pyridoxal-5-phosphate - this is the coenzyme or bioactive form. I've been taking a B complex for years and years, but am just now finding that it probably did not do that much good because of the forms of the B vitamins in the complex. Thorne Research makes a B complex with bioctive forms of the B vitamins and Swanson brand vitamins also makes one now. My body really likes the bioactive forms much better than the usual synthetic ones.

    I still crash regularly - but feel much better in between crashes. In other words, I can do 3 to 4 hours of light activity a day but have to stop then - otherwise I will crash the next day. But during that 3 to 4 hours period, I often feel good, even "normal" - since starting the methylfolate and potassium especially.

    I know this is a lot to take in - but I hope it may help you, and think you really should take another look at the trazodone - it may be a real part of your fatigue.

    One other thing I suggest is find a good chiropractor who does muscle testing. Mine helped me with adrenal fatigue which I don't think would have shown up on any blood test. If you call Standard Process customer service (google Standard Process), they will give you the names of practitioners in your area who use their products and most often do muscle testing. It helped me enormously.

  5. Nanie46

    Nanie46 Moderator


    Sorry you have been getting worse. That happened to me too as the years went by.

    Bioidentical hormones have helped me alot.

    You may want to consider having this test done:


    Your symptoms fit. I found out 3 years ago that my symptoms were caused by more than one chronic infection.

    Here's a good booket of info with a great symptom list:

  6. MsE

    MsE New Member

    I haven't written a post in quite some time. My problem is CFS--or whatever. I say that because some days I'm still not sure what's wrong with me, not even after twelve years or so of dealing with this and a diagnosis by my family doctor in 1997. I, too, have tried lots of supplements, and have recently added B12 to the list. My mom was B12 deficient, so I figured it wouldn't hurt to try it. We'll see.

    Recently the doc increased my thyroid meds. At first it seemed to increase blood pressure so I went back to the lower dose. But, I'm not sure it was the thyroid and I'm going to try it again.

    Last spring I had a mastectomy. That set off a major flare. My brother died last fall. I went to his bedside. That aggravated the flare. On the 20th of this month my beloved sister died. I just got back Friday from sitting at her bedside. More flare. Thursday I must fly back to her hometown for the memorial service. I simply must be there to support her daughters. So, I've spent the last few days doing as little as possible so I can make the trip. Air flight is a must, and that is truly exhausting. But, I would suffer more from a sense of guilt and loss and disgust with myself if I didn't go.

    My remaining brother's wife is terribly sick with cancer, and her mother died when I was with my sister. Overall, 2011 was a miserable year and 2012 isn't starting out any better.

    One thing that helps me, besides a bit of ativan, is a half a hydrocodone pill. It eases the aching and gives my energy a tiny boost. Maybe that's not what it's for, but if it works, I'll use it. And as of today, I've taken the larger dose of thyroid.

    So, I wrote this note to let you know I totally understand your frustration, especially your paragraph: "I have very limited energy, so have to do small tasks and then rest. If I do too much, I get so ill that I almost faint. Then all I can do is lie down and hope to recover. This happens EVERYDAY of my life...if you can call it a life!"

    Yes, hermitlady, it is a life, though a difficult one. I'm sure there are lessons it is teaching us, but I'm tired of learning them. :) My sister suffered with MS, diabetes, neuropathy, terribly swollen legs, MRSA, was slowly losing her vision, tended to choke when she swallowed some foods, and recurring bouts with pneumonia. It was the pneumonia that put her in the hospital this last time.

    I think about her bravery, the inspiration she was for all of us, and I am filled with love and admiration. Rest in peace, my dear Sister, and may I learn just a bit of your bravery as I deal with this disease.

    May we all find peace in our struggle. My best to all of you. MsE

  7. hermitlady

    hermitlady Member

    I'm sorry, but I just don't have the energy to reply to each of you right now. I do appreciate your replies and will try and get back to you. Your stories and input have touched my heart, and I'm sorry for all the suffering we're all having to endure.

    I've felt even worse the last 2 days, and am still coughing my head off from the lingering symptoms of the flu I had. Everything hurts and I just can't seem to recover. I think about going to the dr again, but doubt there's anything he can do for me. I'm just resting and waiting...

    Love to you all......Hermit