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Has anyone on here gotten better? How?

Posted , 17 users are following.

dawn94288
dawn94288

Thank you all for everything you share.  This site has meant I great deal to me, since I have found through it that there are other people who understand where I am coming from.  I thank God for this resource.

 I am almost 50 and became seriously ill with CFS exactly two years ago.  This whole time  I have been beleiving that there is NO WAY that this can be my life. In other words, I have definitely not accepted CFS as an ongoing part of my life.  Friends and family don't help since they say things that indicate "So, when are you going to get better".   When I have made myself face a reality of  living this way for the next 25 years, I have just crumpled or been angry. So.............. I have tried CFS specialists who claim to be able to cure it.  This has been at great financial  cost for my family, of course.  I'm in the US, by the way.  I have received some help, but no cure.

I'm just now barely beginning to accept that maybe I can make living with CFS my new life.  Tears start coming, even as I write that..  I don't want this for my new life. I know that this will sound horrible to some people who don't understand, but, since I'm not scared of death, I would rather die than spend the next 25 years physically miserable and not much of a contributor.  But , maybe I have to accept it, and figure out how I can contribute just like I am.

I have a question, please, has anyone out there been cured?  Also, do you know people who have been cured? Have specialists helped with cures? Should I truly just  accept?  And If I do have to accept living like this, then I want lots of purpose in my life like I use to have.  How have you all found purpose with a body that doesn't function well?  

I hope I don't sound like a basket case!

 

1 like, 87 replies

87 Replies

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  • Beverley_01
    Beverley_01 dawn94288

    Posted

    Hi Dawn,

    I know of 3 people who have got better from this. One who still has symptoms but can work, one who thoroughly believed it was through drinking aloe vera juice and one who had it for a couple of years without diagnosis. My own story s mine fluctuates and I too have wondered about where is my life heading with this awful condition. Knowing people recover is inspiring.

    Be gentle with yourself and as hard as it is, ignore those that doubt its severity.

    Best wishes from across the sea

    B

    • dawn94288
      dawn94288 Beverley_01

      Posted

      Beverly,

      I don't think I thanked you for your hopeful and kind message. THANK YOU!

      Dawn

  • diana33711
    diana33711 dawn94288

    Posted

    Hi Dawn, first of all, let me say how sorry I am that you are sick. I would not wish this on anyone. I have had ME/CFS for about 4 years now and have had some improvement. But, it has been slow. The only reason that I am still going is that my father had CFS when he was about my age and he was bedridden for a year. He never changed out of pajamas and slept almost the entire time except to eat and do very basic hygiene. He couldn't talk to people except for just a very few words, nor did he watch television or conduct any sort of business. He said it took him about five years to get over it completely, but he did and even went back to work. His story gives me hope, as I hope it will you as well. He did not take any meds but he says he feels like the long periods of sleep let his body heal. I know if I can get 10 or 11 hours of sleep per day I feel better and can do a few things like get dressed or shower or even do the dishes sitting in a chair. I, like my father, was bed ridden for about a year. I have been recovering now for several months. I, too, feel like my progress hinges on sleep and the resolution of some vitamin deficiencies and the elimination of some foods that were causing nasty allergic reactions. I read a story last night that gave me some hope too. Dr.Davis, a renowned scientist, in California, has started, or will start soon, research into ME/CFS to find help for his son. His son is completely bedridden and cannot talk or eat or respond. I really feel like this doctor has the motivation to find help for his son and the rest of us, so just hold on, I feel like help is coming. He has found a gene mutation in his son that show up in a large percentage of other ME/CFS patients. I am so very hopeful hearing this news, and I hope you will be too. My advice right now would be to have food allergy testing, make sure you don't have any vitamin deficiencies and get as much sleep as you can. Hopefully, in the near future, we will get some relief. Until then, just take care of yourself and try to remain positive and hopeful.

    Best wishes, Diana

    • Patrickgeoffrey
      Patrickgeoffrey diana33711

      Posted

      Dr David is also the direct of the OMF and has start the rear h with a initial funding of 5 million dollars per year,it did watch the video forgotten plague about his son last night
  • Patrickgeoffrey
    Patrickgeoffrey dawn94288

    Posted

    I have had 3 relapses in the last 15 years all triggered by the flu, I was bad for 6 years,2001 to 2007,then two years 2012 to 2014 and I came down with the flu in January this year, I struggle to walk 100 meters,any physical activity is exhausting,tge only thing in the past that has made me better is rest but it takes me years to get better,my problems started at 17, I am 58 now.I spent a,week on the hospital when I was 17,when I was 18 the do good though I had mono but all the tests came back negative,that was,1975,the term CFS was first used in 1988,there was a ground breaking research paper published in August of this year by the university of California,listing the triggers of CFS and what they believe the disease is,they also identified biological marks that they believe will lead to a diagnostic test for CFS.they discover that cells go into a protect hibernation state due to an infection,tge cells fiction at a low metabolic rate which explains the fatigue and exhaustion,i t is an auto immune reaction to an infection,Doctor Davis of Stanford university and director of the OML has already allocated 5 million dollars a year to confirm the research
    • madge19860
      madge19860 Patrickgeoffrey

      Posted

      I'm so glad there is research going on.  Amazing.  I wonder whether getting flu shots would also cause a person to have relapses.  I'm unable to have flu shots because I get muscle tingling and feel tired after I have one. Doctor says  I shouldn't get them anymore. So I try to be careful not to be in crowds during flu season, which is difficult.

    • pixie22
      pixie22 madge19860

      Posted

      I've had the flu vaccination every year for the last 9 years, and I've not had any flu in that time. I do feel a bit tired and achy for a few days after the injection, like a very mild infection, but it doesn't bother me and it doesn't set off a relapse of the CFS/ME.

    • jackie00198
      jackie00198 madge19860

      Posted

      I've gotten a flu shot every year for the last 15 years. I was diagnosed with ME/CFS over 15 years ago. I've had no ill effects from the shot in all that time. I'm sure everyone is different, though.

    • Patrickgeoffrey
      Patrickgeoffrey jackie00198

      Posted

      By the latest research,thet list the triggers,tgere are a lot of viruses and bacterial infections on the list,the triggers are different but the disease is the same,mmy trigger is the flu and I had my worst relapse that lasted 6 years form 2001 to 2007 it started with the worst flu of my life, I did get the flu shot every year and I got better when I stopped getting the flu shot,tgere might be a connection ,so I have gotten the the flu shot since then, I have had 2 relapses triggered by the flu since then, I am really struggling right now it is extremely difficult to walk 10o meters and all physical activity is exhausting
  • rachael7286
    rachael7286 dawn94288

    Posted

    Hi Dawn,

    I felt compelled to reply to you as I know how you're feeling. I was diagnoised with M.E when I was 14 and subsequently missed pretty much all of school there after. I was lucky as I had a very understanding school, and eventually managed to do 2 GCSE's (home tutor) and 2 A-Levels (it just took me longer to do them). I then managed to go to uni when I was 20, still not well as I had to take things really easy but again, my uni was great about it and only having 5-6hrs of lectures a week I got through everything in my own time. Now at 30 I would class myself, not as 'cured' but definitely as 'much better'. I still can't overdo things (I really pay for it if I do and I know I have to be careful as I don't want to full relapse, I've had mini ones over the years where I have pushed myself too much as its easy to not want to admit sometimes "no I cant do this"wink, I eat healthy (no refined sugar or red meat - my body cant handle sugar sends my blood sugar into a complete spin!), do yoga, avoid stress AT ALL COSTS, try to have a positive outlook as I truely think this helps. There is hope smile take every day at a time, for every day will be different. Appreciate the good days and know the bad ones won't last forever. I know its hard to stay positive, its lonely, its horrible not being able to do things, but take it slow and it'll come - now I appreciate being able to walk down the stairs even, as when I was at my worst I couldnt. I have always found writing helps, whenever I used to feel really down I'd write down exactly how I felt, get all the bad out, and feel better. Not to show anyone else just for myself. I'm still unsure if people truely get 'cured' (I found this forum trying to find that out as I'm having a totally exhausted day and coudnt figure out why) but I think its more about learning to manage your limits and not going past them. And some days these are more 'normal' than other days. Good luck and remember - listen to your body it knows what it needs smile x

    • dawn94288
      dawn94288 rachael7286

      Posted

      Rachael,

      I was touched by your message for a couple of reasons.  One of them is that you took the time and energy to write.  The other is that in readingg what you wrote it brings to attention that I have reason to be so thankful that I had the good years that I did have, because I didn't get sick when I was a teenager like you.  I love your positive attitude!  You gave some good advice that I really need to incorporate into my life.  That is, when I'm having the really bad days having the attitude of "this won't last forever".  When I am struggling with the awful flu like days that are miserable I start to feel desperate and struggle with "I've got to get out of this".  "I can't live like this".  I need to calm down and remind myselff that eventually there certainly will come a better day.  Also, I will consider journaling as a resource since you mentioned writing.  Thanks!  You sound like you have learned a lot!

      Dawn 

    • rachael7286
      rachael7286 dawn94288

      Posted

      Sometimes to be positive you have to have experienced the bad first - this gives you the chance to really see the world around you and appreciate the little things! But yes on the bad days, don't try and struggle through it, this just makes for feelings that you're somehow "failing" by not being "normal" and the impatience to be better. Patience is everything smile I always notice how stressed the world is, everyone hurrying to get to the next step/place, always annoyed at not being there yet, annoyed at themselves, at other people in their way...that they miss out on the now. I'm all for trying to let things go, if I can't change it, why let it worry me (obviously this doesnt always work but its good to try and remind myself to be like that!). The same goes for ME, or any cronic illness, we can but do the best we can for ourselves. Its ok to take time out, rest, and do what you're body is telling you need to do (ie. rest!) and feed it natural foods (I'm a big believer there is too much bad things in processed foods that do our body no good! Natual is best). I do feel like I have learnt a lot, and as cheesey as it sounds, I think I am a much better, more understanding person for having been ill at the age I was. I had to be or else I honestly don't know how I would have survived. Its a very lonely, misunderstood illness (I hate trying to explain it to new people especially as most of the time I'm quite 'normal' now days I do still get utterly exhuasted days though, sometimes I know why eg. I've done too much but other times I don't but I just roll with it and try and listen to what my body needs - when the flu type skin pain starts I know I have way over done things and have to take a couple of slow quiet rest days). Good luck with your recovery and hopefully soon the good days will outnumber the bad smile 

    • dawn94288
      dawn94288 rachael7286

      Posted

      Learning to appreciate the good that the moment brings is one of the lessons that I think I am starting to  learn.  I was always such a "get things done", BUSY, person.

    • elaine62759
      elaine62759 rachael7286

      Posted

      Hi, just wanted to say how inspiring I found your comments. I've had M.E. for 21 years and spent years trying different things to get better but nothing worked. Then I got CBT and saw a nutritionalist. I changed my diet to more natural foods and started keeping a diary writing down what had gone well and what hadn't gone well and what I could do about it. Also took up remedial yoga, paced myself and listened to my body and saw a significant improvement in my condition. Stress definitely makes it worse!!! Have had a very stressful couple of years helping others through illness and dealing with bereavement and had a huge relapse. Ran out of energy to do all the things that were helping me and

      feeling unsure where to start getting back to them. Reading your message has made me remember how helpful I found it writing things down as I could track better what was and wasn't helping me so am going to start writing my diary again and have a fresh start. Also going to improve my diet again and try and start my yoga again a bit at a time as I know this helped me a lot. Am going to start listening to my body and putting myself first for a change. Thank you for inspiring me to make some positive changes!!

    • jackie00198
      jackie00198 dawn94288

      Posted

      Yes, Dawn, me too. This horrible illness has taught me to live in the moment and appreciate the good things. At least, that's my goal. It's not always easy. If I start thinking about what I used to be able to do, I also start feeling miserable. Like you, I was a very "get things done" kind of person.

    • rachael7286
      rachael7286 elaine62759

      Posted

      Thank you smile that was why I wanted to comment, to give what helped me. I think what we put in our bodies, the way we treat them, is so important! Half the time you don't really realise how many chemicals/non natural ingredients are in things. If I eat something bad sugary now (I'm talking a big slab of desert or something!) I find I feel so tired a few hours afterwards/the next day. Like groggy tired. So I try to avoid it. And eat lots of natural based things. As I always say to people - you wouldn't put bad petrol in your car so why put bad foods in yourself its our fuel after all! I do yoga too, only really the very calming, slow yoga but its great (so many videos on youtube! big fan of yoga with adriene as she is good at keeping it light and has some good ones for stress/anxiety which I find really nice to do). Sorry about your rough couple of years, I know its hard staying positive when bad things happen. Have you ever tried meditating? Its really helpful for just switching off and breathing to calmness. Good luck with the positive changes smile its so important to listen to what you need, whether its a nap, a day off, whatever...our bodies know our boundries! 

    • elaine62759
      elaine62759 rachael7286

      Posted

      It's very true what you say - you are what you eat! Am definitely going to improve my diet again. I probably have resorted to having a sugary snack to give me a quick boost of energy but it does make you more tired in the long term so will try and cut back. Will have a look at the yoga on YouTube to see if I can manage any gentle practices. I used to listen to relaxation CDs which I found very helpful, in fact did one today and realised how much they do help me so will try and do them regularly again. Haven't tried meditation but might try that too. Thanks again.

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