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ME / Chronic Fatigue / Fibromyalgia

  • 12-08-2014 8:34am
    #1
    Not2Good
    Closed Accounts Posts: 318 ✭✭


    Do you think that they will ever find a cure? What are the 'Positive' experiences that you had with these illnesses?. i.e. looking for the silver lining of the gi-normous clouds! For me it was learning to appreciate the small things in life, learning patience, learning to be self-reliant but also knowing when to ask for help! I never asked for help before.


Comments

  • #2
    Tropheus
    Registered Users Posts: 1,937 ✭✭✭Tropheus


    It's a tough one. I'm not sure there is one magic bullet. I think those that have it are pre-disposed and there a number of factors that push us over the edge. I think a cure is a long way away as we're still waiting for a gold standard method of diagnosis. The fact is that nobody is sure what causes it. I'm sick of reading articles that say they have found a cause/cure. Every new theory contradicts the last.

    As I mentioned in a previous post, I've found that my vitamin D level was low. I'm now on a supplement and it has helped. Not hugely, but I do notice the difference. I've also found magnesium supplements are useful for relaxing muscles and aiding sleep. Again, not hugely, but it does help. Eliminating gluten from my diet has also helped energy levels. That is probably the most significant improvement I've discovered over the years.

    It's all trial and error. What works for some doesn't work for others.


  • #3
    Not2Good
    Closed Accounts Posts: 318 ✭✭Not2Good


    That is good that you found somethings to help. The above conditions are usually a bagfull of different symptoms. Helping to improve some of them makes the days easier.


  • #4
    Tropheus
    Registered Users Posts: 1,937 ✭✭✭Tropheus


    I find that it's the little things that help. Unfortunately there's no magic bullet.


  • #5
    Not2Good
    Closed Accounts Posts: 318 ✭✭Not2Good


    Hopefully it will disappear on it own accord for you.... it happens.... when it does you often don't hear about it... fingers crossed for you....


  • #6
    kangaroo
    Registered Users Posts: 651 ✭✭✭kangaroo


    The illness certainly improves in time for a lot of people for one reason or another (I think a big things is people simply live quieter lives).

    However, people who don't talk about it, and even those who may consider that they don't have it anymore, are not necessarily at 100%. See, for example, the study below:
    Understanding long-term outcomes of chronic fatigue syndrome.

    J Clin Psychol. 2012 Sep;68(9):1028-35. doi: 10.1002/jclp.21880. Epub 2012 Jun 29.

    Brown MM1, Bell DS, Jason LA, Christos C, Bell DE.

    Abstract

    OBJECTIVE:

    This study sought to examine long-term health, symptom, and disability outcomes among patients with chronic fatigue syndrome (CFS) by comparing those diagnosed with CFS 25 years ago with healthy controls.

    METHOD:

    Of the 25 participants diagnosed with CFS 25 years ago, 5 self-reported that they maintained a diagnosis of CFS, while 20 reported no longer having a diagnosis. These two groups were compared with healthy controls on outcomes related to functioning and symptom severity.

    RESULTS:

    Those who remitted from CFS showed significantly more impairment on 21 out of 23 outcomes compared with controls. On 17 outcomes, those who remitted had nonsignificant differences in impairment compared to those who maintained a CFS diagnosis.

    CONCLUSIONS:
    Findings from this study suggest that over time many individuals will not maintain a CFS diagnosis but will not return to their premorbid level of functioning.

    Free full text at: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3940158/


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  • #7
    mille100piedi
    Registered Users Posts: 396 ✭✭mille100piedi


    I found out Magnesium helps the muscles, d-ribose helps with the level of energy and I am now trying foodcells which is suppose to bring oxigen to the cell and it seems working. I trying to do my best to find a way to live better with chronic fatigue. I don't have CFS but a metabolic condition similar to CFS. I can't make enough energy from the food I am eating


  • #8
    Not2Good
    Closed Accounts Posts: 318 ✭✭Not2Good


    mille100piedi wrote: »
    I found out Magnesium helps the muscles, d-ribose helps with the level of energy and I am now trying foodcells which is suppose to bring oxigen to the cell and it seems working. I trying to do my best to find a way to live better with chronic fatigue. I don't have CFS but a metabolic condition similar to CFS. I can't make enough energy from the food I am eating

    I am sorry to hear that but at least you are looking out for things that will help. You can get Wheat Grass 'cocktail' drinks in health shops that a lot of people find helpful ( I found it better than growing it yourself and juicing it !) as well as the Co emzine Q10 (the latter you'd want to check with your doctor first ...


  • #9
    mg1982
    Closed Accounts Posts: 1,772 ✭✭✭mg1982


    Trying to hold down a job with CFS especially a job that can be physically demanding is near impossible. I work 12 hour shifts but i find it takes me days to recover from one shift, and im spending 12 to 14 hours in bed at a time. Yikes.


  • #10
    Not2Good
    Closed Accounts Posts: 318 ✭✭Not2Good


    My thoughts a prayers are with you, when I had ME work was tough to get through...


  • #11
    mg1982
    Closed Accounts Posts: 1,772 ✭✭✭mg1982


    Do you mind me asking nottogood, how did you overcome chronic fatigue? I been suffering with this for near 17 years now ever since i had glandular fever as a teen, thats what triggered mine.


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  • #12
    Not2Good
    Closed Accounts Posts: 318 ✭✭Not2Good


    Sorry to hear you are laid up with it. I know medical advice is not permitted but maybe the moderator will say it ok to Private message you the contact number of the person who helped me? Ill wait until i get the ok first, I'm not even sure if i have her number or if she is retired or not,
    mg1982 wrote: »
    Do you mind me asking nottogood, how did you overcome chronic fatigue? I been suffering with this for near 17 years now ever since i had glandular fever as a teen, thats what triggered mine.


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