I have real issues with reading about so called "cures"

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My feeling is if you were cured maybe you didn't have this. In 20 long ass years I've never found one. Personnelly I think it's bull!! And if you got cured more power to ya. But careful with false hope. This disease has a 6x higher rate of sucide because people just give up.

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  • Posted

    I think the thing to remember that this isn’t a disease in the tradition sense. There could be a number of different disease all grouped simply by symptoms. 

    But I agree a lot with your post. 

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  • Posted

    I know where you’re coming from. But hope is all most of us have. For me personally just learning, believing and trying something new gives me a reason to go on(false or real). The truth probably lies somewhere in the middle....Some that have been cured never had it and perhaps some really did. We will never know for sure. One thing to consider is the power of these forums is to do more than complain to each other. It has to stay positive.  Hopefully no one is intentionally misleading us. Just my opinion. Take care.
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  • Posted

    Hey Lisa,

    In addition to what Jenny and Joe have said I would like to point out CFS has varying degrees of severity. Also much of the research into treatment has shown that around 80% of people with CFS can improve, leaving around 20% that may not improve. However, this 20% can find ways to adapt to their illness. I have been told by my specialist that I am in this 20% but for me the best way to cope with it is to focus on what I can still do rather than looking at everything that I can't do. Also keeping myself as healthy as I can helps to stabilise my symptoms.

    Look after yourself and stay positive.

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  • Posted

    Well I had a confirmed diagnosis from one of the country's expert in this field. I was never totally house bound, but I went from a very active person to someone who found it very difficult to do anything. I had to keep going because I live on my own and there is no one to feed me. 

    It took many,many years before I started listening to the doctors and started pacing. Think about it, it makes sense. If you use up too much energy your body makes you stop. Can you run a marathon, of course not, no one can straight off. But if you train your body you can run a marathon. 

    I used this approach with CFS. Train my body again to function. The hard part is finding the start point because we all drain the tank too quickly. Once I found that start point then I very slowly started moving forward. 

    So its not bull and there is hope, but can you a. make the sacrifices and b. stick to the programme and not do too much. 

    I did and I reap the rewards. Every day is a pacing day for me still, but my level of activity has gone through the roof now. No fancy diets etc. 

    Best of luck, there is hope. I too didn't believe but now I do 

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  • Posted

    Hi Lisa,

    I think that on bad days it is hard for many of us to see a light at the end of the tunnel and that hope, patience, mindfulness (whatever you want to call it ) is all we have at those times. At present i am having a "relax" as opposed to a relapse in symptoms. Sure my walking still sucks, have cotton wool for a brain and I'm talking gobblidy gook but i am not in the state i was at Christmas time when i was mostly in bed feeling very very ill. I see my manifestation of this condition as a rollercoaster and am prepared to take the peaks and troughs until hopefully a day where i don't have to anymore and can function without set backs. It can feel a lonely and difficult path Lisa but, people do recover. People who were bedbound (tons of stories cementing that) people like us and no one can say which ones of us will recover as there's not been enough research into that.

    I eat as well as i can and eat organic veg to help. I don't have coffee, wheat or dairy-but i didn't have those before because my body doesn't tolerate them well. Find what helps your system/ What doesn't. Perfume, too much noise or crowds are too much for me now also. On bad days, rest and hold onto hope. Yes, Suicide is high for people with this condition but it is also very high right now for under 25's-people with their whole life ahead of them. Suicide is not giving up in my opinion. It's not an option i wish to ever have to seriously consider and i hope you don't either. But when things get really bad, and pain and exhaustion prey on our already tired out systems, people can think it is the answer. I wish they had support, someone to care for them and a hand to hold in those dark times.

    Hang on in there because, there's research being done for us and a permanent cure could just be around the corner. Until then pacing and rest are all we have and does help people with this condition.

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  • Posted

    i agree some what.

    People can get better but cured is tough one because we do not know the nature of this.

    I have found the people that have gotten better tended to be the ones who did life style changes quickly after becoming ill but this still doesn't guarantee anything different people are affect in different ways.

    I do think a lot of people that have been diagnosed with this are just cases that there illness is unknown but they fit the guidelines but do not really have cfs

    Suicide rates are high for all long term conditions and the thing with something like this there is not much support in place.

    Another thing people at times with the internet now get into the negatives to much I have had so many patients join support groups online and I looked myself at them and it's all negative with no hope of getting better, so on .

    people at times need to be willing to try even if it may be painful or they may find it difficult just like anything in life at times theirs no reward without risk what do you really have to lose and it is never a quick fix results can take months to years.

    Before people attack me saying I do not understand I do I am sufferer myself as is one of my daughters.

    I was housebound for over 10 years a lot of that was also spent on my bed it took me another 7+ to start going back to work for few hours a week.

    My daughter appears to have a very unstable kind which we are in process of trying a few things out mostly starting with a sleep pattern and reducing the meds she is on

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  • Posted

    My discussion wasn't meant in any way to take hope away. This forum is the first I've ever joined. Others are just too negative and sound whiney. I have been on the extreme end of this illness. And after 20 years I have earned the right to complain. When everything around pertaining to this disease is negative well you have to dig deep and find that hope and cling to it. I could right a book about that. I live in the United States and you can have all the access to health care you want if you can pay for it!! I can't do that anymore. I would be lovely to deal with one health crisis at a time but I don't have that option. I deal with a half a dozen at a time. So when I hear the word 'cure' yeah I have issues with that. I am very aware that this disease has varying degrees to which it affects the individual. Hell I'm not trying to rain on anybody's parade. This is my reality....

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  • Posted

    i wish i bought a pulse oximeter ($12 on ebay) years ago.

    my pulse was too slow due to being in bed 22 hours a day.

    when the pulse is too slow, the body can't remove waste from the cells.

    so no matter how much sleep i got,  i did not recharge.

    ..

    Anyway i had 3 EKG tests and my heart is great, so i'm taking thyroid meds and can set my pulse myself, and i'm doing LOTS better!  can to 3 or 4 times more stuff before i have to lie down.

    Just rode my bike 1.5 miles and worked a half hour, now i'm resting. Before i'd be done for the day, now i expect to do more stuff later. Maybe i'll mop the kitchen! even a chore feels great with a little more energy.

    Any questions or comments?

     

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    • Posted

      Hi Joe,

      i just got my lab tests, and i'm thrilled with the results! Why? Because i'm still in the normal range (was worried i'd do something stupid)

      T4-free 1.2   (normal is said to be 0.8-1.8)

      T3-free 3.8   (normal is 2.8-4.2)

      To find the normal range, they test 100  people and that is "normal".

      So with a good heart and good BP 122/70, this looks good for me, but i caution you to be careful, i check my pulse 100 times a day LOL I'm learning how my body works and every day i'm surprised! I just swept and mopped the floors, for example, and i'm surprised how fast i recovered from the bike ride and posting here helped motivate me!

      Cheers!

       

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    • Posted

      I wish i knew! I moved from NJ to FL and my blood tests were lost.

      My guess is that, the DR's thought my T3 was normal,  and they didn't try any meds.. Maybe T3 was 3.0, in the range, but i need 3.8. 

      Anytime i mess up the dose and my pulse drops low, i can't get out of bed! So i see the old days now and then, and i hate them. 

      BTW, in the past decade i NEVER swept and washed the floors the same day. i was too tired to  do both. So today shows my improvement! 

      I hope this helps!

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