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Fatigue, fatigue... fat igue and a bit of iron!!!

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    Fatigue, fatigue... fat igue and a bit of iron!!!

    Who has it?
    (sorry thats a bit of a joke, knowing if your here your with ms and you likely have fatigue in some form)
    but may I ask you this, how have you learned to live with it? What do you do?
    meds? don't push yourself? holistic approach? try and get your 8 hrs (or do you need more). Has it prevented you from working?

    I'm tired of being tired, so I've almost giving up.
    he is one last shot at the can. I've tried some forms of ginsing - didn't help. I tried amantadine - I felt like I had zero personality (brain dead). I tried moving my body - walking was so effortful that is was painfully unenjoyable. My new B12 shots (taken weekly) helped two months ago, but only for the first two injections, the increase in energy was no so significant there after.

    ah and two months ago I was told I was anemic - who know for how long. So I'm trying to figure out that balance. I'm hesitant in taking iron daily as it constipates (I don't need more of that) also since Dr. Zamboni's news I've learned MS patients tend to have too much iron in the brain that may be causing some/all/part of our MS symptoms.
    Any suggestions on how to deal with the iron?

    Sorry for my ADD.
    back to the fatigue: I have problems explaining myself effectively to doctors esp. the scale at which the "fatigue" affects me. When you explain your fatigue do you use the before and after approach ( i used to be able to...) or do you explain how it makes you feel, I don't know how else to express how much its affected my life. I barely work and still I have no energy. Its so frustrating.

    I will soon be applying for ODSP and CPP-D so different ways in which to describe the fatigue would be awesome. I'm sure I can look back at my messy journals, but I have a feeling though I usually write in the journal when I'm at my wits end, and will sound like I am whining or neurotic.

    Peace, and Happy 2010!

    Patricia.
    Its a good day to be alive.

    #2
    Do you eat alot of protein or drink protein shakes? Perhaps instead of taking iron you could try and increase your iron intake naturally with meat.

    Second, how much vitamin D do you take everyday? I know when I increased my vitamin D intake I started feeling less tired.

    Also, have they checked your thyroid levels. Some CRAB drugs have been known to cause the thyroid to be out of whack which could make you incredibly tired.
    When life hands you lemons, you better start making alot of lemonaide.

    Comment


      #3
      Tired of being tired

      I know how you feel im not working right now doto it. but pain comes along with mine so i take lortab witch helps some but if im having a good day n dont need my pain meds i take it anyway for the fatigue .also ive hread that some adhd meds work i havent tiried that,because im already own enough stuff .so i try to rest n prepare but i understand its a struggle.

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        #4
        The fatigue for me often hits me fast and hard with very little warning that I need to rest NOW. It was, I think, the first reason I left work. It feels like someone has opened a valve and drained me. I can't think, form coherent sentences, type or even hold myself upright. General noise- the sound of the tap, even the phone ringing makes it even harder to focus. At this point I need to lie down and rest immediately.

        Fatigue can come on any time, any where for me; I cant pin it down to any one activity. One day simply talking will do it, another it's something else. Some days I may be good for a couple hours without needing rest, some I can't get out of bed.

        For me Amantadine did nothing and Alertec (Provigil in the US) didn't help the fatigue but it kept me awake. Ritalin works well for me but I try to pace when I use it so I don't get addicted.

        Also, get your vitamin D and B12 checked. Proper levels of those will help.

        True MS fatigue is unlike simply being tired. It's real and disrupts everything you do. It makes EVERYTHING ten times harder than it should be. I used to tell friends that if they drank a bottle of tequilla and strapped 50lb weights to their arms and legs, they may begin to see what it's like.

        Don't let anyone from CPP-D or ODSP or anyone try to tell you it's just being tired. Make sure to say the fatigue interferes with your ability to concentrate, think, reason and communicate EVERYDAY. Remember- no sometimes!

        Explaining before and after examples are good.

        To be honest I don't know what effect iron has on the stenosis thing. I have always been insanely low (to the point of transfusions) yet have tons of lesions and stenosis. (shown on ultrasound. I didn't have an MRV)

        Comment


          #5
          Hello,
          I'm not from Canada, but couldn't help dropping in since I saw ya'll (yes, I'm a Texan) were talking about CCSVI.

          I have heard a lot of MSers talk about being anemic. I have struggled with this for as long as I can remember. It was discovered years ago that post-mortum MS patients had abnormally high levels of iron in their brain. The theory is, the iron gets released in the brain, so you can become anemic.

          CCSVI makes a LOT of sense to me. My very first episode with MS was while I was on my first diet ever. It happened to be the Adkins diet. I was eating tons of red meat because of the protein in it. That's what the Adkins, or low-carb. diet is all about. I was eating more meat than I had ever eaten in my life. Red meat, obviously, has lots of iron in it. While on the diet, my hand started shaking so bad, that I couldn't hold the computer mouse still. Big disability As soon as my hand started shaking like that, I stopped the diet. I thought I had low blood-sugar or something. It got so bad, I was spilling things and couldn't write. My PCP said stop the diet, which I had already done, and ordered MRI. I was diagnosed probable MS, because there was only one lesion at the time. To this day, I completely attributed the diet with the shaking in my hand. My neuro said no way, they were not connected, but I couldn't help thinking they were.

          Also, the Swank diet helps my symptoms. I don't follow it near like I should, but the better I follow it, the better I feel. The Swank diet is exactly opposite the Adkins diet. Swank recommends no red meat for, like, six months, then no more than twice a week after that. Many people have had great results with the Swank diet. Is it because it is low in iron?

          I can't help but think they are definitely connected. I believe Zamboni really does know what he is talking about.

          That said, getting iron naturally rather than by pill wouldn't make any difference. It's still iron.

          I don't have the answer to the iron thing, cause our bodies do need it. However, at this point, I try to avoid it as much as possible. I guess my thinking is, I would rather be weak from low iron than I would feed the iron to my brain. The iron doesn't help me feel better anyway, it just goes to my brain and makes me feel worse!

          I do take Provigil for fatigue. As sillygirl said, they help me stay awake, but don't make me energetic.

          I look forward to being tested for CCSVI, cause I think the surgery will make all the difference in fatigue level.

          Comment


            #6
            Fatigue, fatigue and more fatigue....

            Hi there!

            I too have been off work for over a month,(short term disability) as I am so friggin tired all day and all night long...I am 44, just found out that I am in menopause, so, I'm not sure if that's a contributing factor.

            I was diagnosed with RRMS in Sept/09...Started Rebif in Oct/ 09 and had to stop in Jan/10 as it caused my liver enzymes to be dangerously elevated. I'm not currently on any DMT, my neuro is looking at copaxone, however, the side effects scare the living daylights out of me...

            I had a mild relapse in Jan. (optic neuritis) coupled with this extreme fatigue...I don't know what I am going to do! I have tried modafinil and amantadine for the fatigue with no positive results.

            My neuro wondered if maybe I was depressed as ms can cause depression and depression causes fatigue (vicious cycle), ...Honestly, I am more angry than depressed, however, neuro prescribed prozac that I have been taking for almost a month, still really exhausted and feel my mood is the same as it was a month ago??? so, that's my current treatment.

            I also have fibromyalgia, so the neuro is wondering if that is part of what's causing the fatigue...At any rate, it's debilitating and I totally hate it.

            Does anyone know of anything that will help with the fatigue? If this continues, I may have to apply for long-term disability and I'm not sure how successful that will be in Ontario, Canada.

            I would greatly appreciate any advise you have to offer.

            I do hope that one day soon, we will all feel as good as new.

            Cheers,
            Oggel
            To know the road ahead, ask those coming back (Chinese Proverb)

            Comment


              #7
              Fatigue is by far my worst MS symptom, when I am not in a relapse.I was diagnosed in October 2008 with RRMS, did not start treatment until March 2009 ( I was not going to at first) and I started with Copaxone.

              Along the way we tried different things for fatigue:

              Alertec, Symmetrel, Dexedrine, Ritalin and I even tried Low Dose Naltrexone on the off chance that it might help but it did not. Added VitD and VitB12 but nothing seems to work. My insurnace company decided I had to try aquasize and yoga 3 times/week for 3 months; when I was able to get there I was great while in the water, had to have a nap as soon as I got home and probably one or two more during the day so I guess that did not work either.

              When I have my blood tested they just everything is fine. I can no longer work, heck I have no life. I just went out of the house yesterday for the first time in almost 2 months (other than taking the dogs outside and letting them back in). I have a wonderful fiance who does my grocery shopping and just about everything else for me or I would be screwed (not sure if I can say that or not, lol).

              My fatigue is constant it never goes away I had one good day in 2009 and one in January of this year, the 4th to be exact but no reason why, I cannot pinpoint anything that was different on either one of those days. Where I live we have hardley seen the sun all winter and I am sure that makes a wee bit of difference but I have no control over Mother Nature.

              I have to wonder if I too have something else in addition to my MS because like I have said to my dr can that one disease make me feel so crappy (not my word, lol) ALL of the time???

              I look forward to the day when MS is cured if not cured at least easier to live with than it is right now (for me anyway).

              Hugs
              Barb
              Come play on MY Island....

              I thought all I had was CRS and have now been told MS

              Comment


                #8
                how to cope with fatigue.

                I wonder too how to cope with extream fatigue, I don't work and I just started doing some swimming the last two weeks hoping that would give me some energy. but I am so drained when I come home and sleep for hours. I am so weak as well I don't know if this is a relapse or just muscles trying to work extra hard. I hate it I feel I wast a day in trying to recover. and left feeling weak. it's a horrible feeling. I really don't want to give up yet I love swimming i feel good again when I am swimming. I get my balance back. And my body isn't working against me.
                Not dx yet, had symptoms now for 4 years. First Neuro App was August 5,10.MRI DEC 8,2010 Finally done. Original MRI was for July 4,2011

                Comment


                  #9
                  Vonnag...Iron build up and other toxins that can't drain due to stenosis et. al. yes that's the issue. Clogged venous return is the problem. The brain must be drained of the toxins to function properly so the immune system does not mobilize and the BBB remains intact. You Tube: "CCSVI" and see for yourself!

                  Comment


                    #10
                    Coping with Fatigue

                    Hi there and good morning...I am some what new here, I am from Edmonton Alberta. Fatigue you say, yes Id dare say that we have it in one form or another. There are a couple of things that I do in order to at least take the edge off of it.

                    One of the biggest thing that will bring on lots of fatigue is allowing yourself to become too warm. Heat will cause us all sort os problems, and one if the problems is fatigue....when ever I can avoid getting to warm, I avoid it as much as possilbe.

                    Another thing that really does help with fatigue is getting as much exersise as you can muster. I know what you are thinking, Im alread dead tired, and now I have to exersise....but it really does relieve the fatigue. If u can, walking is good, or any other method that u are able to do...

                    Diet can really assist as well when it comes to fatigue..High fat diets and things as such will contribute to the fatigue issue. Consume lots of fluids - water is the best, and eat lots of fruit, veggies and fibre via whole grains, etc.

                    These are some of the things that I do to assist with Fatigue
                    Have a great day
                    Gary

                    Comment


                      #11
                      There is something that might help with your fatigue, but from what I understand, those of you in Canada might have difficulty getting it.

                      A lot of people with MS (and chronic fatigue syndrome, cancer, etc.) have had great results treating fatigue with acetyl L-carnitine and alpha lipoic acid. I've been taking them for over a year, and that bone-draining, extreme fatigue is a thing of the distant past (unless I forget to take them.)

                      You might try and see if Puritan's Pride, an online supplement store where I buy all of my supplements, can ship them to you. I know they have international shipping, but I'm not sure what restrictions there might be on these substances.

                      Good luck and hugs,

                      Lisa
                      Joy is not the absence of suffering. It is the presence of God.
                      Cut aspartame from my diet in 2012 and my symptoms have slowly disappeared. Interesting!
                      Alpha Lipoic Acid (200 mg) + Acetyl L-carnitine (1,000 mg) = No more fatigue for me!

                      Comment


                        #12
                        Miss Mellow,

                        You asked some very good questions about how to describe fatigue...how are you making out?I have simiar concerns.
                        I am also applying for LTD and if grante, cpp-d.Any advice from your end?
                        take care!!

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