Can't live like this forever. How do people cope with M.E long term? Has ANYONE got better?

Posted , 13 users are following.

Hi anyone,

I am feeling increasingly hopeless living this condition. I have been trying to convince myself that I will get better and I will be me again and then life will be worth living again, but right now I feel like I have exhausted every avenue to no avail. I have rested and rested and paced and followed every piece of advice I can possibly find and I still feel so ill.

I have been unwell on and off for nearly two years now, which I know in comparison to others is a short time but I am struggling massively. I am clearly not as resilient as others who have managed to live feeling like this for years and not give up. I have been signed off work for 3 months currently, I am about to lose my job and I feel too weak to do anything about it. I just cannot get my head around how people live like this, trapped in physical pain it's torturous.

I no longer get any enjoyment from anything that I do because I constantly feel like I'm about to pass out or throw up, I'm regularly doubled over with abdominal pain or reduced to tears by overwhelming pain in every part of my body. I find it embarrassing when I'm sweating and shaking and so vacant and I'm around others. Every day I experience a new symptom which frightens me more. I cannot bear the feeling of not being in control of my body, feeling so dizzy and spacey like I've been drugged. I cannot bear the pain and nausea anymore and not knowing how I will feel from one hour to the next. I don't feel like I can leave the house now because I never know how I will feel and I've had so many experiences were I've been out of the house and suddenly felt so so ill and began vomiting or thought I was about to collapse and just needed to lie in a dark room alone and haven't been able to get home.

I've been lying in bed unable to sleep for hours due to a sharp pain on my breast bone, painful legs, burning up and and an overall feeling like I have a horrible virus. My life has been completely stolen by this illness and I just cannot see the point in existing like this just to feel pain constantly, never ever experience any enjoyment due to the physical symptoms and to just feel like someone I do not recognise. As extreme as it may sound, I have been looking into becoming a member with DIGNITAS with the hope that if I never get better at least maybe there will be a way out of it all. Although I don't know if this illness would qualify for their assisted suicide. I feel like my only options are get better or not be here anymore, because I certainly can't exist with this illness forever. I have no desire to continue to 'manage' the illness and live in this state because there's simply nothing in it for me.

There is so little support and medically accepted advice out there for this condition I feel so alone. My experience with the NHS has felt like I'm screaming and no one can hear, I just keep being brushed off, told to wait and given conflicting advice.

Please can anyone get back to me and let me know if they have experienced the same feelings and how they've dealt with it. I so desperately want to hear from someone who has got better and how. Or maybe someone who was misdiagnosed and was able to be treated. I've read so much about people with M.E never getting better and having to manage the condition for the rest of their lives and it terrifies me. There is so little information available about people who have got better and I'm desperate to hear if anyone has.

Thanks x

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  • Posted

    Hi, Amber. I wanted to respond to your post right away because you're suffering so much. Yes, people can definitely get better. I personally know several people who've gotten better enough to resume work and normal activities. One woman friend improved so much she was climbing all over a steep hill by her house pulling weeds. When I first got ill I was so sick that I thought I was dying. I couldn't even lift my arm up. I had to lay flat without doing anything all day. I couldn't sleep either. Friends could not understand how I couldn't even watch TV. One friend even said, "They have TV's in the hospital so that sick people can watch them." In other words, she thought I was faking it. My husband is the only person who knew what I was going through...most of the time. There were times when he told me I could do more than I was doing. Made me furious. Very gradually, I started feeling better. I actually went on a small vacation, though, which was a big mistake because I relapsed. Even so, my symptoms are way less severe than there were in the first couple of years. I know that when you're in the midst of severe symptoms and pain, it's hard to imagine you'll ever feel better. But there's every chance you will, especially since you've been ill for less than 3 years. Is there any way you can go outside of the NHS and see a private ME/CFS specialist, preferably and infectious disease doctor or a rheumatologist? The treatment recognized by the NHS (cognitive behavioral therapy and graded exercise therapy) is now very widely questioned. I think it's a bunch of baloney that can do a lot of damage (well, at least the exercise part). Is there anyone you can talk to, if you're able? You're not alone. Those of us on this forum understand what you're going through. I think ME/CFS is a worldwide epidemic. It's estimated that as many as 17 million people have this disease worldwide. It's truly a crime that it's not being taken more seriously.
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    • Posted

      Hi Jackie,

      Thank you so much for your response. Can I ask do you know what those people did to get better or was it just a case of waiting?

      At the moment I am waiting to see the specialist in Liverpool who I believe specialises in infectious diseases. But this is through the NHS and I have been waiting for two months now with no sign of an appointment date. Unfortunately I'm not in a position to pay for anything privately as I have spent all of the savings I did have on supplementing my statutory sick pay to live and try various treatments I had read about like supplements, herbs, vitamins, detoxes and so on. I'm now living off statutory sick pay alone which just about covers the essential costs of living plus the many prescription charges, travel costs for appointments etc.

      I have read the research relating to CBT and graded exercise and it's very disheartening. I'm on a waiting list for CBT and have been waiting 7 months now, again no sign of an appointment date. I feel perhaps the CBT won't do any harm but I am very weary about graded exercise as I too believe it may be damaging. It feels so surreal that this is all the NHS has to offer in terms of treatment and that they're so willing to dismiss alternative treatments?!

      I do have good friends and family around me who all care but I find I'm very sensitive about comments that are made, I feel people don't always fully understand what I'm experiencing. As you said, when people imply you can do more it's infuriating. This forum has provided me with more comfort and support than any other avenue. It's nice to hear from people who understand what I'm saying.

      Thanks again!

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    • Posted

      The way my friend got better was through a very specialized diet and unraveling some childhood traumas. I've found that the ways out of this disease are as varied as the ways into it. It's almost like we each have to figure it out for ourself. There's certainly no magic pill. And, yes, a lot of people get better by simply resting and doing nothing in the way of treatment. I did CBT and, like you said, it certainly didn't hurt. It was good to have a friendly ear. I'd be very cautious, though, about getting into the graded exercise. There's a huge chance that it can worsen your condition.  Both specilists that I've seen here in the U.S. think the research leading to the NHS treatments was deeply flawed. I totally understand your being sensitive about comments made by friends and family. It's almost like someone kicking you when you're down. The best thing you can do, in my experience, is to rest and pace yourself (and I know you've heard that before), get a good night's sleep if you can, avoid sugar and caffeine, eat healthfully, and de-stress in any way that you're able, whether is be by listening to music, deep breathing, meditating, practicing mindfulness...whatever. You can get better.
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    • Posted

      Hi Amber; I have only just found your message/s.......cannot add more than Jackie has re personal help, but as to the CBT that may help you to 'work through your personal issues", as it has helped others to cope, you can find the programme on the Internet, which will save you that problem of having to travel to the centre to partake of same, as this in itself, can be very draining DO need to Really let yourself partake of this programme for it to work (but if you are anything like myself, my mind can be too Deep to let Go???)

      ​I guess the only way that I have learned to live with this/these conditions, is to play one day at a time............some are worse than others.........but when in house by myself, make the most of the resting.......doing your Own thing....(another thing for me, has been this forum, and realizing that there are soooo many of us, and then the researching of web sites for  'beneficial informatio"  re what they are coming up with.....this in itself is sometimes enough to keep me going.........................although it is nice to have visitors/getting out of house, it usually has the rebound affect, so don't push yourself in this area

      ​I, too, understand the desperation of having to realize that we cannot work anymore.............I am still, after 17 years, trying to find something that I can work at, even for the stimulation, as I really enjoyed my chosen career, but after pushing myself (even into lesser occupations), it has done me no favours.

      ​As to your financial issues, and what you have been trialling in the supplement ways, can you tell us what you have been trialling, and we may be able to give you more of a "benefical list", as many of us have tried many different supplements, to only find some that work?.............will be waiting to hear back...................Bron

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  • Posted

    So sorry for your suffering. I've had this awful illness for over thirty years. The most helpful thing for us is: deep and restorative sleep. Most all of us suffer from sleep apnea, or less deep sleep, stages 1-3,,when what we need is stage 4. You'll need to have a sleep test to find out. I've been taking Xyrem for the last decade, that and a cpap machine, I'm having less pain and am able to have a little life. 

    No more work for me. I sold real-estate, and it was too physical and too draining. I don't have the concentration anymore. I still take strong pain killers and rest in my bed a lot. Now, I'm old and retired, so it isn't so noticeable. I'm just another creaky, complaining, old lady.

    We do find our way. Get a good dr., find one or two. I have a good neurologist,(sleep specialist), and a good pain dr.(For medication). Physical therapy is helpful, as is a psychologist for support. Reach out in your community for help.

    Sorry, that you're feeling so down. Hopefully, this next new year will bring you comfort and support.

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  • Posted

    Hi Amber,

    Yes folk can get better.

    Everybody is different but here is my story briefly.  (I'm not sure how this forum tech works, but you can probably find my posts from around a year ago to six months ago)

    In June 2013, overnight I went from very fit to basically housebound.  It turned out to be a virus which had me in acute ward for a month.  When that finished, I was left with CFS.  After six months, I was still not back at work, still confined to reclining on a couch 22 or 23 hours a day.  Memory problems too. A year in, still unable to work, so had to retire through ill health.

    Several specialists (all nice!) tried several things.  Nothing worked.

    To keep sane, I took up knitting - and also bought a powerful electric pedal bike, watched loads of Netflix, read loads of novels.

    Two years in, actually slowly getting worse.  We thought of selling the electric bike, which had been a major joy - practically drifting around up to half an hour a few times a week.  But even that was becoming too painful.

    Medicines hasn't worked, diet hadn't worked, I didn't need CBT (though I think it can be useful for helping with 'secondary' issues caused by such a change of lifestyle.

    25 months in, I Invited a vicar round to listen to me and pray for me.  That was a Friday.  The following Monday I felt different, by three weeks I could cycle an ordinary bike gently for 12 miles and walk 9.

    I will be 55 soon and hope to get a job

    Take from that what you will.  But do try and find very low energy things you might enjoy.  Whatever you do, don't do too much.  I did and frequently got 'boom and bust' - and that could be caused by sitting up talking with friends for an hour.

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  • Posted

    Hi Amber

    I too have been signed off work for 3 months but having had it since I was 17 (I'm in my 40s now) this is only the second major relapse in that time. It was brought on due to excessive working hours. I think I ended up just running on adrenalin for too long with nothing left in the tank. Eventually after a particularly stressful event at work, my body gave up. The first time was due to glandular fever - which was also the trigger. So in answer to your questions - yes you can have relapses and bad ones but you can recover so don't give up. Regarding your symptoms - what medication are you on? In my first major relapse I too suffered with nausea to the point where every movement would make me heave. That hasn't ever left me and I now take anti sickness daily but it really does work. Regarding Liverpool I too was diagnosed by them way back in my 20s and have recently returned to try and get support. I can outline what they will offer you if you are interested but it's no cure I'm afraid. Finally use the M.E. forums/websites there may be a support group in your area. When I first got it I found this invaluable as it helped me to realise what I was feeling was shared by others and I wasn't going mad. 

    I've only just joined this forum but if there is a way of mailing me privately for the Liverpool info and medicine info I'm happy to respond. In the meantime keep talking and don't give up!


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  • Posted

    Hi Amber,

    I'm so sorry you're feeling so desperate with this horrid condition right now. I cannot lie, I've said similar myself. But, break it down a little. You sound like you got totally overwhelmed by it yesterday and all of it together is like trying to climb a mountain. My friend with this gets the painful chest and like you, breastbone. They use a cooling spray that helps. With the painful legs, try elevating them and see if helps. The burning up, cool flannel etc but, you may well actually be ill. I am and It feels like you say, a horrible virus. As we with this feel like that alot of the time, I know its hard to know. Rest is so hard, especially at this time of year but, what is needed. I know how boring it is though.

    Try to remember that you are still you just that your power is reduced? So its like you're on emergency back up. Just like as if you were on a generator, you can't do all the things you usually would be able to. Having low mood Is part of the condition, who wouldn't feel low with it? But, please see it as temporary, try to see past it it will pass. I've been there and what gets me through is that I have children that I picture would be devastated if I disappeared right now. It tends to make me cry when I think of that and that seems to help. Don't feel bad for having the thoughts Amber, its a terribly difficult Condition to have. Its recognizing that you feel low but that will change that is the key.

    Next, the job. I'm not sure how long you have worked where you did? Its just that if you have been there two years you have better rights. Its a fluctuating illness and I believe that your employer has to make reasonable adjustments for any return? This, I feel is further in the future for you but, they can't just sack you. Let them know that this stress is not helpful to your condition. Also, let them know that cfs/me is under the disabilities act.

    Finally, yes some people do get better! I met one woman recently who had it after a virus that got better after about 2 years another after 4. I know of someone else after approx 2 yrs who is better but manages it by taking extra rest and works part time rather than full time. Also, someone on here got better after a year. I can say for myself, my symptoms have changed? I do rest more though and try darn hard not to feel guilty for that. I ask for help more and again try not to see that negatively. I was so independent and self sufficient before and its taken me time to adjust. Pain hinders our thought process. I have cut back my activity to get less pain. The foggy brain etc is from overdoing things too. Not sure If it helps but, I've recently got a wheelchair for when I feel bad but still want to go out. Its the type someone else can push. It felt such a sad step but then I talked to a man whose wife has this and he took her on holiday and used it so she could still go out and I realized that I was right in getting it. I talked it through with my cfs specialist nurse and gp first. We agreed its a positive in getting me out of the house on bad days. Not used it yet but knowing its there helps.

    Be gentle with yourself . Hope things improve soon

    Best wishes


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  • Posted

    Ah Amber that's so sad to read that you feel that bad you don't want to be here anymore. I was diagnosed with CFS/ME in early October and by November the doctor had put me on Foloxitine (antidepressants) because I felt like how you're feeling now and if only had it a month so I can't even imagine how you must feel. Last week I came off the Foloxitine and started on amitriptyline. Apparently with what we have we don't reach Rem 4 (I think it's that stage) which is the 'deep sleep' stage which leaves people feeling refreshed so apparently amitriptyline helps the body produce more serotonin to enable us to get into that deep sleep. I have to say I have been sleeping better and in the last 5 days I've been out every day and not ached as much as normal. I've also been having 2 sachets of complan a day, prescribed by my nutritionist, as sometimes I can't eat because the muscles in my jaw ache so much it's made me lose so much weight! They are full of vitamins and nutrients so I think they've been helping as well. I've completely cut out caffeine as. I was signed off work completely so I've now become a Netflix addict but I do believe that not having to worry about if I'll be well enough for work and college has really helped. Oh, for the last week I haven't napped in the day and I'm finding it's helping me get into a better sleep at night.

    I hope some of that helps 😊 Xx

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  • Posted

    I have got better after many years of suffering and here is my story. 

    My GP sent me to see one of the UK expert in the field and he confirmed my condition. He did refer me to a specialist nurse who to be honest, told me the obvious and that was the extent of the help I had. Because I live on my own, I have to do things and earn a living. Sorry but living a life on benefits when you have always had a very good salary was not for me. The outcome was that I just managed to work. I gave up one job because the travelling was too much and use to spend all weekend and the evening in bed, trying to get enough energy for the next day. 

    My GP was very supportive and she told me about another patient of hers that was now doing triathlons and that was what I needed to get me going, after years of boom and bust because I did too much. She had always told me to pace and that was the technique I used. 

    I started to learn how much I could do without going backwards and that was all I did. I stopped doing lots of things and slowly got myself to a level where I could function with no adverse effects. Saying no was very hard but it worked in the long run. Then I introduced cycling into the equation. An indoor trainer where I just spin the wheels, very easy and started out doing a few minutes. This took months and patience. After 6 months I could cycle 30 mins. So I decided to try it outdoors, bad idea, ended up in bed for 2 days! Undeterred I reduced my outdoor ride to 15 mins and that worked, success. 

    I also suffered terribly with my brain not functioning so I started playing games on my tablet like Solitaire and Suduko. I could do that when I was in bed and it helped me feel that I was doing something positive towards the condition even though I was in bed. Suduko has really helped and I think my record now is around 5 mins, it use to be 30mins or never on a really bad day. 

    After about 20 months and slow steps forward and the odd step back I only had a couple of minor relapses in 2015, that's a day in bed, I cycled 30 miles outdoors up a hilly route. 

    Every day I still look at what I do and if the warning signs are there I back off, but I am being to feel like a normal person again. For me it was will power, but then I am a very determined person and pacing and learning to say no, this is all I will do today.

    Hope you have some success in 2016 

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  • Posted

    Like you I am in a bad place and the thoughts are with me all the time. I will be 79 in July what would I be losing if I went now. The only thing that keeps me going is my wife who has been through this before 20 yrs ago and maybe a few short relapses  but what is it doing to her. I saw mother nurse my dad for three years and when he finally went she had nothing left. Have I got the right to do this to my wife. Talk about confused


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