Questions for those in recovery or getting better

Hi All, yes i had an illness before, mine was chest (twice) and sinus infections on the third chest series i just got worse and worse and worse.... and came down with ME which was only diagnosed after elimination testing.... made a comeback and was getting back to 80 or90% of previous life when stress and all its side efects laid me low agqain and then included heart conditions. I have read that a previous in life chicken pox or glandular fever (me at 22 years old) are often the origional roots Sinuses seem to be involved a lot as of course chests and intestines... due to heart needing some exercise and ME needing some rest i am finding it very hard to get a life balance and have found mindfulness very helpful in accepting where i am and being able to build again.... but a real challenge.

 

Hi

I find staying positive about my condition and having achievable goals like aiming to go around some of the supermarket rather than sit in the car waiting, or doing a little bit of DIY. or standing in the greenhouse for 5/10 minutes just looking at the plants growing... 

A lot of prescription meds can give you fatigue so I read all of the tech sheets that come with the meds, and make a note just in case I find I'm being effected by them later on... statins are a fine example of this. I try to avoid various plants from the Nightshade family in my diet also.

I think coming to terms with ME and knowing its nobody’s fault you have it, and there is no magical cure for ME either helps me, everybody appears to handle it differently at different stages of their illness.

My Doctors on the whole have been worse than useless at helping me with ME/CFS. Specialists in neurology at the hospitals, have confirmed I have ME but could only give me advice to “go home and potter” so it really down to me to survive the terrible condition that I have developed known as ME.

I was totally bed bound at one stage nearly 20 years ago but managed to build myself up to the point I’m not asleep for 20 hours a day, I might be in pain and with brain fog 75% of the time, but I fight to stay out of the bed or off the sofa, as my father once told me “it’s a good day if you can see yourself in the mirror” at least your alive… so today is a good day :-)

GeorgiaS i find you so positive - it's so lovely and refreshing to read!

I'm currently at a point where I don't whether to be very realistic about my limitations. But sometimes when I push myself to do things I enjoy them so much and just forget about everything for a short while. I've previously found the Viridian High Five very good as well but it doesn't seem to be helping at the moment. 

Hey GeorgiaS. Before I start off, I would like to say that I dont truly know if I have CFS. However, I do know that my crazy fatigue did happen out of the blue one day after have the Flu. Ive had it for 11 1/2 months now. The first month, I was exhausted with no other symptoms and WAY overworked my body at that point (passed out playing tennis that first month). Months 2-5 I experienced horrible fatigue, minor migraines, bad soar throats, scary brain fog, bad vision, no concentration, difference in personality. During month 5 and 6 (July-August) I slept 13 hours+ every night. I drank gallons of water to stay hydrated and just "relaxed." I would consider this time my Low Point. Found out I had tonsillitis and got my tonsils removed which helped a little but the fatigue stayed with. However, the brain fog went away mostly, fatigue isnt as terrible, concentration much improved. I dont experience any PEM which is why my CFS is up in the air. However, what I changed in my diet was this: I take 4 supplements: fish oil (1 a dat), Complex B Vitamin (1 a day), Multivitamin (1 a day), Vitamin C (2000mg a day). I drink MUCH more water and knocked out all sodas and most caffeine (gatorade is a good option). I have cut out a lot of gluten, but cheat a lot because who doenst like gluten? mm pizza. 8-9 hours of sleep + a 1 hour nap a day (Oversleeping kills me). EXCERSIZE. This is key! I play tennis twice a week for 2 hours and go to the gym twice a week for 1 hour. I literally feel exhausted all day but once I start working out my mind clears up a bit and I feel energized for a good hour after which is nice. I also attend school every day no matter how tired I am. I feel like people who have recovered rarely visit these sites because they never want to look back on how terrible an illness they had to deal with

Hi all, its so nice to read through everyone's posts and pick up some hopeful tips along the way :-) I've had cfs for 4 years now and like most of you there was a long period where I could do very little, walking up the stairs was a huge feat and sleeping for me was very hard, i was lucky to get one or two hours a night, you get the picture ;-) But now I am a million miles from there, i can sleep for 8 hours most nights, i can take short walks, i can enjoy being and I can feel well once I stick to my routine. So I thought I should share what I do in case it can help others.. I take Siberian Ginseng (not normal ginseng - which I did not like at all, it made me feel much worse) Ashwaganda, Digestive enzymes which seemed to free up a lot of energy for me (I found it interesting to read how many others also suffer with digestive dis-ease) probiotics, vit c, homemade veg juices in the spring and summer, soups in the autumn and winter as they are easy to digest and take little from my energy reserves. Zero stimulants like coffee and tea, no dairy, i also need meat like the others above. I also have a hormone imbalance (low progesterone) and take wild yam and agnus castus for this but this is taking a very long time to improve. At least it appears this way. does anybody else have any sinilar issues with hormones? I know the adrenal glands are intricately involved with the sex hornones so it makes sense that this could be another common dysfunction..

I was diagnosed with CFS about 6 yrs ago. I have a very supportive GP who sent me to one of the country's experts in the condition who confirmed her diagnosis, but my road to recovery has been driven by me. 

This past weekend I achieved a milestone when I cycled 20 miles, I use to be able to do 60 miles. here is how I got there 

I tried the the counsellor with CBT which helped change my outlook. I have been absolutely lousy at pacing myself but it has been the key to my success. For 5 yrs I continually boom then bust, doing too much when I felt good and then ending up in bed for days. My GP suggested resting for 30mins at a time doing absolutely nothing but I found that difficult but I did mange to do it eventually. I was determined that i wasn't going to let this stop me doing what I enjoyed doing so its been a huge amount of will power  as most of he time I feltl like doing nothing and I use to work in overdrive. 

I read a medical study about dark chocolate and regularly eat Lindt 85%

The cycling I started out at 5 mins very easy indoors on a trainer using a heart rate monitor. Over the year I have gradually increased it and there have been a few ups and downs but it's helping make me feel better.

i use a FITBIT to monitor my sleep to ensure that I get around 8hrs and its so helpful when I start sleeping a lot because it helps me picking up the warning signs to take it easy

there is no miracle cure, just take each day as it comes