Overdrive and getting better

Thanks Maz. I feel like my body wants to sleep non stop, without routine of breakfast etc. Were you the same? What did you find that helped you?

When I was on the relapse it wasn't that I wanted to sleep it was more like I didn't have any energy to do anything. That meant I couldn't get up till 11am (and in fairness I did doze) then I got dressed etc and made it to the sofa downstairs and did nothing except jigsaws on the Kindle. I just wanted peace and quiet and darkness. I managed to do a short walk each day which I made myself do so I had some activity. So my routine was get up by 11, go on a walk about 1pm then do a jigsaw at about 6pm then make tea about 7:30. In between I'd do nothing but rest.

Mazpaz

I agree with Georgia about diet helping with recovery. It's very hard at first to put the effort in but it certainly pays off. It is a gradual process that requires patience and endurance. I wish you well.

I have been dealing with the symptoms for 16 years I am on my third relapse, I don't think diet helps you just get better in time slowly,the flu seems to be the trigger for me.I took me two years to recover last time.I have been doing badly for 7 months now

how long did this last? and are you better now? 100%? 60%?

did you change your diet to super healthy? supplements? meds?

thank you for any information you can give me.

I am in a 7 month relapse and doing badly, I struggle to walk a 100 metres the problems started when I was 17, I spent a week in the hospital at 17,it get worse as I get older, I have had 3 relapses in the last 16 years.The last two were directly triggered by the flu,nothing helps I just get better in time my longest relapse was 6 years 2001 to 2007

I know some people who recovered with diet Patrick. One of them is called George and he's a member of this site. And I've improved some of my symptoms with diet/herbs etc.

Recovery and relapses are actually common. I have had 3 relapses in the last 16 years,yiur recovery might just be a coincidence. I did work for a medical lab for over 20 years that did both diagnosis and clinical trails. I always had my blood work done at work.A treatment has to be proven with clinical trails.Both of you might have gotten better without doing anything special, I always get better without doing anything special that is why I am sceptical.My job also took me to hospitalists,nursing homes,clinivs and doctors offices there were many doctors that saw me get worse everyday,they would ask what was wrong and which specialist I was seeing.When I told them they would just say if he can't help you no one can. The GP I had over 30 years ago,be came the director of a hospital I went to see a specialist at,that specialist said my problems are probably caused by a virus and I will get better in time and there is no treatment,that was 12 years ago. I did get better but I have had 2 relapses since then both directly cause by the flu. I see one of the best specialist in my city at one of the best hospitals in my country. I live in Toronto Canada the largest city in Canada. I know people and doctors in every hospital in the Toronto area. I actually believe my problems start when I was 16 or 17,I spent a week in the hospital when I was 17I also dropped out of highschool and finished highschool by correspondence at home. I did recover but at 18 I got sick again the doctor thought I had mono but all my tests came back negative,I recovered after 3 or 4 months.Then when I was 21 I came down with the flu,then after that I just didn't feel well, I had to give up bicycle racing. I was unable to train properly or finish a single.The tear before I actually won a race and had a good season but in the 4 years I raced seriously I got sick 3 times in the winter and would have to sometimes drop out of races because I didn't feel well. I did give up training and racing for 4 years.I did get back into training and racing between 25 and 34,running as well.At 34 I ran in the Toronto Marathon,I did finish it but I felt so sick towards the end that I never ran another one or ever went for a long run again.At 42 things got a lot worse,e Everytime I would go to the gym and workout I would start feeling sick.I had to stop going,I do remember getting the worse flu of my life around that time. It lasted a week were I was bed ridden and my muscles were so sire and stiff I could barely walk,much the same as my muscles feelI now and the last two relapses. I had to stop running at 44, I had dizzy spells when running.That relapse lasted 6 years the worse one of my life. The present one is 7 months so far, I still seem to be getting worse but then the last 16 years has been a lot worse, I am 58 now,I have learned to life with the condition but have never discovered anything that actually makes a difference I have relapses and then I recover nothing I do seems to make any difference. I do know recovery can be sudden and in stages with good and bad days quick and slow,I know I wll get better this time but it might take years,last time it took over a year,but thelongest relapse of 6 years the recover was fairly quick about 3 or 4 months,that was 9 years ago

I have been dealing with the symptoms for 16 tears I am on my third relapse you will get better without doing anything special, I gave recovered twice now,I was very fit when it started I use to run marathons and was on a healthy diet,I don't think it makes a difference you just get better anyway

That's interesting Partrick; I haven't heard anyone say that before. So when you recovered weren't you doing anything such as special diet, herbs etc?

Did you change anything in your life?

I didn't do anything special I just get better in time nothing seems to make a difference,but the relapses are trigger by the flu. I was raised on a healthy diet,my grandparents joined a green party in the 1930 and were into healthy eating and naturopathic medicine and exercise.That is how they raised my father.That is how I was raised. I don't think it makes very much difference.My grandmother did everything right at 60 she was still going for 20 mile walks,she belonged to a walking club,but she died of cancer at 65,my mother also died of cancer at 65 and two of my aunt's died of cancer. I don't believe healthy prevents you from getting sick or helps me get better. I use to run marathons,heathy eating definitely helps you when you are healthy,I ran my last marathon at 34, I felt sick towards the end and never ran another one. I gave up going for long runs. I totally gave up running when I was 42 and started really getting sick,by 46 I was walking with two canes. I did totally recover just before my 50th birthday.I had a relapse in 2012 for two years and this year in January. I am having trouble walking now it is hard to walk a even 100 metres.None of the doctors I have seen have ever make a diagnosis.

I wish I could recover like that. I'm sorry to hear that you're relapsing.

I had to be referred to an ME specialist to get a referral.

Have you ever had the flu shot I suspect he flu shot caused problems for me 15 years ago, I haven't had the flu shot in 11 years. I think it might cause problems for me but I don't really know.

I'm not sure if I had it once because I'm a thin diabetic, but since I found out they may be bad for us I've refused them.

I was on steroids for skin itching for a while and they may have done me harm.

Have you had any viral infections or the flu in the last ten years. I always have a relapse when I get the flu now and other people have said it started after a viral infection.Have you noticed a connection,that is why EM is also called Post viral fatigue syndrome,it is actually just a name for a group of symptoms but not officially an actual disease yet he research has not advance to that point yet.as there is no test to say you have it and there are no clinic trials to prove it and there is no treatment proven with clinical trails

Yes, I've had ME for over 10 years and before I got it I picked up a virus while I was camping that lasted about a month and it was severe.

I sometimes feel like I have a virus, with some flu like symptoms such as sore throat and sneezing but it doesn't run it's natural course like before I had ME. I think this is because my immune system is compromised so it doesn't react normally.

Anyway ME makes me feel like I have the flu virtually all the time.

That is exactly how I feel, I have flu like symptoms and feel like I am fighting a virus,but like you said it doesn't run it's usual course like the flu, I know exactly how you feel, I have soreand aching muscles just like the flu, I have always described the symptoms as being flu like,but I have always had the feeling that muy immune system is over reacting and is too strong. I think my immune system is too healthy

do you have any idea what brought on the relapse? did you do too much?

when you're not crashing (and btw how long do those last?) are you able to lead a normal life and exercise, etc?

thank you

The last two relapses were directly caused by the flu,2012 for two years and January of this year it is 7 months now and I am having trouble walking. I sometimes feel sick when I walk my dog in the morning,he is 17 so he walks even slower than I do. I had to give up running 14 years ago,ran my last marathon 24 years ago, I felt so sick towards the end I never ran another one. I haven't exercised in 14 years. I ran my first marathon 42 years ago. I did get so sick at 21 that I didn't exercise for 4 years. I was able run races again from 25 to 34,did do lighter training from 34 to 44 but not since then I am 58 now

In another forum several years ago people kept referring to a weakened immune system but I started to think that it's not weak, it's overactive and confused.

I have to take antihistamines for skin itching caused, I think, by my immune system on the attack in some way. Surely a weak immune system wouldn't do that.

I don't think our immune systems are too healthy though; I think perhaps there's a communication break down in the body and the immune system. And that our HPA axis and hormones are involved in this.