Help with ME

Discussion in 'Chronic Fatigue Syndrome Main Forum' started by Mandyspike, Apr 30, 2015.

  1. Mandyspike

    Mandyspike Active Member

    Hi all, I have recently been diagnosed with this almost unbearable condition M E. I have never joined a forum before but I am hoping I might get some help from it?
    I have been suffering terribly since May 2014. Everyday I have felt I'll somedays worse rpthan others. It's hard to believe its not something life threatening I get it that severely. I am 58 and feel 90
    What gets to me more than anything is the response of some people when you inform them that M E is what I have. Comments like its all in my head. People who suffer this illness know how debilatating it is? I can't describe my symptoms as I have never in my life experienced anything like this. I was so fit and healthy. I don't smoke or hardly drink and I eat well. It's just not fair! Later today I will have to take my 3 year old Grandson to the park but I know that after pushing him for the afternoon I wont be able to get out of my bed the next day. I would just like to chat with people who are suffering like me and that I am not on my own. Help!!
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  2. ljimbo42

    ljimbo42 Active Member

    Hi Mandyspike- I am sorry you are suffering with this terrible condition. First of all I would like to say that this is without any doubt a physical condition that can cause both physical and psychological problems. I have also felt so sick that I really felt like I was dying.

    I think the feeling of dying mostly comes from a lack of energy in our bodies on a cellular level. Several years ago I spent most of my days in bed, unable to do much more than watch television.

    Today I am doing much better, I cook 3 meals a day, do my dishes, go out for walks sometimes, etc. and the only days I spend in bed are when I am sick with the flu. I still need to be careful not to over do it, but my overall level of functioning is much better than it was.

    You wrote-
    That is called "post exertional malaise" and is the hallmark symptom of ME or CFS. If someone doesn't experience post exertional malaise (PEM), than they do not have ME or CFS.

    I am 55 years old and my health is still improving, so it's never too late. So you can improve your health. I think the best place to start is with a good clean diet, which it sounds like you already have to some degree. Also probiotic's are very important as well. Digestive dysfunction can cause many problems, diet and probiotics are very, very important to strengthen the digestive system. Jim
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  3. Mandyspike

    Mandyspike Active Member

    Hi Jim, thanks so much fir getting back to me with your useful information.. I have felt alone and frustrated and really needed to speak with someone who had the same condition and who Knew first hand what I am going through day after day.
    How long have you been tormented with M E? It seems to be a long time?
  4. ljimbo42

    ljimbo42 Active Member

    @Mandyspike - Yes, I have had ME or CFS to some degree since I was 18 years old. It first hit me at 18 but I was able to clean up my diet and lifestyle to some degree and able to go back to work. Then slowly over the years the fatigue and other symptoms came back until I became disabled.

    I was working a part time job up to about ten years ago, (still partly disabled) when I was experiencing a lot of stress and taking many medications, that's when I could no longer work at all. It is very common for people that have ME/CFS to get it during or after a stressful event in their life. Sometimes it is an infection (cold, flu, brochitis etc) that triggers it or it can be from other stressful events in someone's life. Other times it just comes on slow over many years.

    In hindsight some of the medications made me much worse, then I was without them. I have learned a lot about ME/CFS in the time I have been sick and I am very hopeful about improving my health further. Did your ME come on suddenly in May 2014?
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  5. Mandyspike

    Mandyspike Active Member

    Hi Jim, What a long time you have had to suffer this condition.
    When I look back now on my life I think the onset was about six years before it became quite severe. I used to walk for miles but it got to the stage where I used to jokingly say to my family that I have aching bones, so it must have been creeping up on me then.
    I have had my fair share of stressful times like many of us, but I lost my sister in the March of 2014 after a year long illness, so like you mentioned it could have been due to stress.
    I will manage to get out and about if I really have to, but all the time I have the Flu like symptoms which are as you will know classic symptoms of ME. Having said that if I get it severely I can hardly do anything, even showering is impossible.
    How disabled are you? Are some days worse than others for you? I can never tell how I am going to be from literally one minute to the next. On the odd occasion I wake up and think Wow! It's gone. Not for long though as it rapidly takes over my body once again.
    Like I have said before I was a very active person and it's upsetting me terribly not being able to do what able bodied people take so much for granted.
    All my GP can prescribe me are strong pain killers but to be honest they don't really help. You say that some medication you were taking made you worse, have you found anything that helps you at all?
    Look forward to hearing from you.
  6. ljimbo42

    ljimbo42 Active Member

    Hi Mandy- Several years ago showering was a HUGE task for me, it felt like I was getting ready to climb mount Everest, just thinking about it.:) I am doing much better than I was even a year ago. I was functioning at a very low level, now I am able to do 3-4 hours a day of cooking, cleaning, and different things, most every day.

    I do still have days when it's much harder to do these things though, that is the nature of ME, it ebbs and flows so to speak. I too cannot be sure how I will feel hour to hour and sometimes minute to minute, but when my symptoms flare they aren't anywhere near as bad as they used to be. That's funny that you sometimes think you're ME is gone, I do too. It still amazes me how I can feel so good, like I have finally beaten my ME one day, and feel exhausted the next.

    I haven't taken any medication in several years now, the only thing I can remember that really helped me was SSRI'S (antidepressants), but they almost always came with side effects, they primarily made me tired. I was taking morphine several years ago, but the relief I got was temporary at best, a week or so after I would go up on the dose, my body would adjust to the morphine and the pain would return. The best relief I have had is from supplements. Do you take any supplements?
    Last edited: May 3, 2015
  7. Mandyspike

    Mandyspike Active Member

    Hi Jim, I hope you have had a good day today? I am so pleased to tell you that my day has been great! The best I have felt for a while. I have been out and about with my family and the only discomfort I have is in my neck.
    I have just retired to bed so I thought I would drop you a quick line before I put my head down.
    I have to travel on the train for an hour or so tomorrow. I hope I don't pay the price for enjoying myself today.
    You tell me that supplements have helped you with your illness? What exactly do you take?
    I always have multivitamins along with a tonic that I buy so whether or not they help me I don't know.
    Can you describe to me just what your body goes through on a daily basis? I find it so hard to describe my symptoms even to my GP.
    I was working for a company for 18 years and in 2008 I took early retirement and when I think about it it was a blessing in disguise because there is no way I could manage any form of work now. I often feel that I would like to do a bit of shop work but I am just not fit enough.
    I have mentioned to you before about people not realising the severity of discomfort we go through and I just wondered do you experience negativity from people? I tend to think that they think it's an excuse for not doing anything, but that's not the case is it Jim?
    How do you cope when you are going through rough days? I find It is so upsetting especially when the weather is nice and people are out and about enjoying themselves.
    Anyway I had better turn off the light now.
    Sorry if I have gone on a bit.
    It's such a relief to talk to someone who understands.
    Hope you have a good day tomorrow.
  8. ljimbo42

    ljimbo42 Active Member

    Hi Mandy- I've been really busy the last couple of days. I am glad to hear you had a good day out with your family. I take many supplements, the one's that have helped the most are methylfolate and methylcobalamin. These are the active forms of folic acid (vitamin b-9) and vitamin b-12, respectively. They help to bring a process up that is slow in people with ME/FM called methylation, have you heard of it? It really is hard to describe all the different symptoms I experience every day.

    I have the flu-like symptoms, aches and pains especially in my joints, mild headache most of the time, and of course fatigue that ebbs and flows, also temperature sensitivity, light and noise sensitivity. These are the main ones I think, but there are so many more. I don't experience a lot of negativity about my illness, but when I tell some people about it. I can tell by the look on their face, they have no idea what I am talking about.

    You would think by now with all the millions of people that have this illness that most people would know about it, but that's not the case. I think some people do think we are just lazy, but those are the people that have no idea how debilitating ME can be and often is. I think most people with ME are FAR from lazy, I think it is just the opposite. We often will push oursevles beyond our limits to get things done, knowing that we will pay a heavy price for doing so, but we do it anyway. When I have rough days, I try to remember that they will pass, as they always do, and just try to take it easy.

    Like you though, sometimes when it's nice outside and I feel awful, it really bothers me. The other thing I noticed about flares, is that my thinking becomes very affected. I have learned that when I am in a flare, I often feel depressed. Not because I can't do as much in a flare, but because the flare actually changes my brain chemistry somehow. So I also try to stay aware of that as well, so I don't spiral down even further. I also have a pretty good routine I have established that helps. Do you have a routine that you follow?

    UVAMOMB Member

    What is ME?
  10. Mandyspike

    Mandyspike Active Member

    Hi it's good that you have joined the forum. If you read back a little you might get a rough idea of what it is.
    It's basically an illness, well I am going to call it that which can be totally disabling.
    If you have the time look back on our discussions.
    It's really hard to explain but I will have a go.
    In my case it's the most awful pain all through my entire body, in my bones, muscles, every where. Head aches it even causes bowel problems. Also chronic fatigue which some days are worse than others.
    When I have a bad day I can't even get out of bed it's that bad. Even bathing is totally out of the question. It's so severe!!
    It can be that bad I really think there is something serious going on like cancer or something.
    But it isn't cancer.
    You just have to learn to live with it.
    Like I say it consumes my whole body.
    Do you think you may have ME/CFS???
    Read upabout it if you can.
    UVAMOMB likes this.

    UVAMOMB Member

    Thank you so much, MandySpike. I have Fibro, CMPS, CF, Dystonia, Facet Disease, Overall Pain Syndrome, Occipital Neuralgia, severe DDD, cervical, severe cervical arthritis, boney spurs, severe arthritis in knees hips, some in hands, tachycardia (recent diagnosis), GERD, Achalsia, COPD and Diabetes. I will go days without sleeping, have lots of severe nerve pain, and have a really hard time getting up out of bed. I have been sick ten years now, and it seems like more and more things keep going wrong. I had surgery on my esophagus, fundoplacation on one side, myotomy on the other, repair of umbilical and hiatal hernia in February. First part of April I had pneumonia and was septic. I don't mean to complain either. I have been worse, been better. I am so thankful I found this. I appreciate your answering me.
    Do you have hard knots under your skin. I have three in my arms and one in the bottom of my foot.
    Thank you again.
  12. Mandyspike

    Mandyspike Active Member

    Hello Jim,

    No I haven't heard of the supplements that you find helpful. I am feeling all right today so I will go out and see if I can get some. I will try anything when my ME flares up which I am constantly in fear of. Thanks for that.

    When I read how you describe your symptoms I might have well described them myself as they are so similar. When I have a bad day I feel depressed about it too, the reason is I feel my life is slipping away when I should me enjoying life to the full.

    I have quite a few people in my life who I love very much, but when they ask me to do anything in advance I say yes, be it going for a meal for example, or a concert or babysitting children, then I am in constant worry about how the event will effect me but I don't like saying no. That's the problem with me. But it shouldn't have to be like this should it Jim. I do feel sorry for us.

    Know one could possibly know what we go through. I think people think its a great excuse for getting out of things.

    I am no where near as bad as I was this time last year so I am grateful for that but I am always conscious that it could be like that again.

    I mentioned to you in my earlier emails that I used to walk for miles and nowadays I can't walk as far which i miss doing so much.

    We all need a bit of exercise don't we and i am getting hardly any apart from general household chores that tire me out especially hoovering. No i don't really have a routine, i just get up when i feel like it and just potter about doing my own thing really. Although i have recently decided to join a fitness spa quite near to where i live which will then probably start me off with a routine. . It has everything there. There is No Way I could ever think of using the Gym but what I am looking forward to is a Jacuzzi, I am thinking that that will soothe my body and if I can manage it, a swim. I am starting next week, I can try these things can't I? I am hoping it might ease my symptoms a little.

    Like you have said there are perhaps millions of people out there with this condition. It would be nice if they joined in this forum. It's such a relief to know we are not alone.

    How have you felt in yourself these last couple of days?
  13. Mandyspike

    Mandyspike Active Member

  14. ljimbo42

    ljimbo42 Active Member

    Hi Mandy- I can really relate to you saying yes to do things and then worry about how it will effect you, I do the same thing sometimes.;) I have that same fear of flares as you do, which is completely understandable given the misery they bring. I think the jacuzzi could be really helpful, because it will improve blood flow throughout your body and help to relax you. If you get the methylfolate and/or methylcobalamin, start with a very low dose.

    They will help normalize the methylation cycle in the body, which is very dysfunctional in most everyone with ME. That will bring up levels of something called glutathione, which is a absolutely crucial antioxidant in the body. The higher levels of glutathione help to get rid of toxins in the body, but if it is done to quickly it can make you feel really awful because to many toxins get mobilized to quickly for the body to get rid of them. If you do get some methyl-folate I would wait to take any until after you start the methylcobalamin and see how that goes.

    I forgot to say that the methylcobalamin needs to be sub-lingual tablets, because it is very poorly absorbed in the digestive tract, but it is very well absorbed under the tounge. So start with maybe 100-200 micrograms (mcg) of methylcobalamin if you decide to try it. You will probably need to cut a tablet in half or quarters to get 100-200 mcg. So if you can get 500 or 1,000 mcg tablets, that would probably be best. I didn't have any problem with methylcobalamin mobilizing toxins, but some people do.

    In the last couple of days I have felt pretty good considering how busy I have been. I did need to take 1/2 an extra strength tylenol the other day for a mild headache, and I had some mild fatigue, but not bad. I'm glad to hear you are feeling alright today! Jim.........
  15. Mandyspike

    Mandyspike Active Member

    Hi Jim,
    Thanks for message. Iv'e not taken the supplements yet that you recommended, I need to go into town to buy them and I haven't had chance as yet.I am hoping to get there on Monday. I am looking forward to trying them, it would be fantastic if they help me.
    I hadn't heard about Methylation so I will read about that later on.
    I have been quite busy myself today and up to now I'm not feeling too bad, I have mild symptoms lurking in the background though. So I am chilling out now.
    How has your day been??
  16. ljimbo42

    ljimbo42 Active Member

    Hi Mandy- My day has been pretty good. I have been much more active than usual in the last week, but tolerating the extra physical activity very well. I hope your mild symptoms pass you by without much of a problem. Here are a couple of links to functional medicine doctors that have been treating people with ME/CFS/FM for years. They explain a lot about methylation, glutathione and why they are so important in recovering our health. I hope these links help you.

    This first link is to an article by Dr.Mark Hyman-

    This second link is to an article by Dr. Suzy Cohen-
  17. Mandyspike

    Mandyspike Active Member

    Hi Jim, thank you so much for the information you have passed on to me. It is really interesting and I am going to stock up on the foods that contain Glutathione. I actually really like those foods especially the spices in fact we have had a curry this evening.
    I still not managed to get into town yet for supplements.
    Hey things sounds good for you at the moment? Are you still feeling ok?
    I have been to the health club today that i told you about even though I felt quite bad when I got up this morning. I still not right but glad I went and I really enjoyed it. Let's see what I am like tomorrow.
    Take care Jim
  18. ljimbo42

    ljimbo42 Active Member

    Hi Mandy- There are many very healthy foods that help boost glutathione. I really enjoy broccoli and brussel sprouts. I love brussel sprouts sauteed in a little butter with onions. Curry is great in boosting glutathione as well as lowering inflammation.

    I still feel pretty good, my overall energy has increased in the last couple of weeks and so I am feeling better overall. Glad to hear you made it to the health club.

    One thing I am learning is to honor my limits and not push myself beyond them as often, so I don't crash or flair so badly. At the same time though I thinks it is important to get the exercise I need. I hope you are feeling better today.:) Stay strong..... Jim
  19. Mandyspike

    Mandyspike Active Member

    Hello Jim,
    Nice to hear back from you and I am really pleased you have had a good couple of weeks. That is great news Let's hope it continues for you. Relish the feeling good while it lasts which I am sure you will?
    When you say your feeling good, do you have any symotoms at all? Or are you free of all discomfort?
    Just to re-cap again. All those years ago when you were first diagnosed, did you go through all the tests to rule everything out? Medically I mean.
    Also how we're people's reactions about ME at that time because it was many years ago wasn't it? I was just wondering did society not recognise it as much then as they do nowadays even though I do think a lot of people are still a bit ignorant of the disease.
    I got a negative response the other day from someone in my family believe it or not, As soon as I mention CFS and try to explain it I can see that their interest wains and so I change the subject.
    What do you like to do hobby wise? You have mentioned the tidying of the house and you manage to take a walk? My favourite past time is reading. It's just as well that I wasn't a sporty type lol. When I feel bad I can't do the housework so that is where a good book comes in.
    I am feeling terrible at the moment, the mornings are so bad. No Health club today as my poor body won't allow me to go out, even though it's lovely and sunny outside.
    I still can't believe that there isn't anything seriously wrong with me, the discomfort is so bad.
    I don't feel that bad I have to stay in bed but it is bad enough to make feel upset and down right miserable.
    It is such a shame for us Jim. Will we ever be rid of it?? I am very upset this morning.
    You keep up the good work and don't do too much will you???
  20. ljimbo42

    ljimbo42 Active Member

    Hi Mandy- When I say I'm feeling good, I mean that most of my symptoms have lessened and my energy is better than usual. I still have some level of fatigue and pain, just less of it. Yes, my doctor at the time I was diagnosed did many tests, but nothing could explain my symptoms except ME/CFS.

    Actually from what I can remember, the people I told about my ME, didn't have any idea what it was, nor did I for a long time. Sorry to hear that someone in your family is not willing to listen and understand your ME. As far as hobbies go, like you I like to read and do a lot of it.;)

    I also bought a small karaoke machine many years ago for about $100 and spend an hour or so, 2-3 times a week doing karaoke. I used to be a very physical person and hope to be again. You write "will we ever be rid of it??" and I believe it is very possible.

    I have read of several people that have gotten well and many, many more that have improved their lives dramatically. I have gone from functioning at about 5-10% of normal, to about 30-35% of normal in the last year or so. So, it is without any doubt that we can improve our health, of that I am certain.

    You write "I don't feel that bad I have to stay in bed but it is bad enough to make feel upset and down right miserable". Try to remember that the miserable feelings will pass and you will feel better again. When I feel miserable, I try to tell myself that as often as I can, because they always pass. Hope you feel better soon!:) Jim