Posted , 9 users are following.
Hi, I was diagnosed with ME/CVS about 4 years ago and since have been unable to find anything that helps. Just wondering what sort of things people have tried that helped. The fatigue is so overwhelming at times that I can't feed myself. Any suggestions would be a blessing.
0 likes, 23 replies
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jillian27195 diana33711
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diana33711 jillian27195
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cassioneandonly diana33711
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Hi Diana,
I'm sorry to hear about your condition. I can only recommend trying to keep a healthy mind and body. I know it sounds silly and a lot easier said than done but it worked for me, so I promise you there is hope.
Treat yourself with love and care, eat healthy nutritious organic foods and try to keep stress levels to a minimum. Maybe practice yoga or go for walks, depending on what you feel you can do. I took a multivitamin and cod liver oil every day, as well as 5-htp in the evenings. I read books and spent time with family, and every day that I could I made the effort to get myself ready and get out the house. Sometimes it felt too much but other times it really helped.
Stay positive, laugh lots, never give up hope. I don't know what gave me ME but I do believe that this is what healed me.
diana33711 cassioneandonly
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Thank you. I was bedridden for a little over a year and am just within the last few months been able to get dressed a few days a week and sometimes I can walk to the back yard for a few minutes. I have been on vitamins and b12 injections since this began so my vitamin levels are good. I had a setback in April when I had Shingles and they lasted for about 6 weeks. I'm still weak from that too. I am hoping that I can get to where I can go to the market again. My husband has been the shopper for the last 3 years as I had to quit working. I really miss my life. I appreciate the words of encouragement! ?
phillis55984 diana33711
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Listening to my body and resting when it says "rest" has helped. Wearing a neck brace helps when I get the "dizzies." I seem to do better when I watch my diet and keep the carbs down--sugars, white food--and eat more protein. I believe in vitamins. At least I don't catch colds when I take them (especially Vit. C), and I don't ache as much when my calcium intake is good. None of these things does more than keep me going, Diana, but I am now 81 and have CFS for at least twenty years, so I'm still going. :-)
diana33711 phillis55984
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Bless your heart. I do get dizzy quite often so the neck brace sounds like a good Idea! I had some allergy testing done a few years ago and found I was allergic to cane sugar, dairy, wheat and several other things which I have eliminated from my diet and think that's what has helped me some. To be 81 and still going gives me hope that I will survive this too. Thank you so much for the Information!
phillis55984 diana33711
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Be patient with yourself, Diana. That is the big lesson CFS teaches! I understand about missing your life, but you DO still have one. It just isn't the one you had. There are days when I have a heck of a time concentrating on what I can still do and what I still have instead of mourning the old me or feeling jealous when I see some other 80 year old gal on TV running in marathons or on youtube jitterbugging! I really really really miss dancing! But then, no one ever said life was fair. It's up to us to make the most of what it dishes up. (I can talk a good talk, but putting it into action is a heck of a lot harder. :-) )
diana33711 phillis55984
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Good advice! I will try and remember your words. I used to love dancing too...although I could never jitterbug! I'm not very coordinated! 😁 I've had a rough day today but your kind words have made me feel better, thank you,
Beverley_01 diana33711
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Hi Diane,
As ever, the official line is resting and pacing. Like you, I've had to rest from necessity alot sometimes. It's no fun, I know. The hard bit Is not doing too much when you have energy. I read one story where the activity was very slowly introduced. A couple of minutes a day to start with. But, this led to an amazing recovery-just took alot of time. Patience and hope are key.
Best wishes
Beverley
diana33711 Beverley_01
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My best to you,
Diana
cassioneandonly diana33711
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Hi Diana, I don't know anyone that has made a full recovery.. But I certainly recovered back to near normal health, enabling me to live as a 'normal' person. I was bed ridden for around 6 months, it was a slow recovery over the next couple of years. Now 4 years later I am able to work out at the gym, go out for a drink with friends, work and enjoy myself. All as long as I am looking after my body. Things do affect me more than most. I have to eat healthily and get enough sleep etc, I still have a slight intollerance to alcohol and caffeine. But I'm
Happy, and oh so grateful. You will get there x
diana33711 cassioneandonly
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jeanp diana33711
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Hi Diana,
My post was deleted because I put in a link. It was to Health rising, not spam, an informative website which has some stories of people's recoveries and what has and hasn't helped them.
But we are all so different and have to find our own ways, I guess.
I am sorry you are having a rough time of it; sometimes when you have a bit of recovery and a setback that seems even worse, doesn't it?
We may not have the life we used to have, as Phillis says, but what's the point of regrets and nostalgia? let's just do what we can, when we can, and get as much enjoyment and interest out of it as possible.
Hope you feel better soon.
diana33711 jeanp
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I really appreciate your information. I just feel like life is passing me by at an alarming rate. I just wish there was more research being done to help us. I just hope I can reach a point so I can attend a few of my grandchildren's sporting events. Thank you for your kind words. I wish wellness for you too!
wknight diana33711
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PACING with very slowly increasing activity levels and learn to say NO I can't do that. After several years I can cycle 40 miles before I couldn't do a lot.
diana33711 wknight
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Wow! That's amazing...I hope I can get to that point some day! Thank you for responding and giving me hope for the future. ?
phillis55984 wknight
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