A short sad history of ME/CFS

Triker

I have or rather am recovering from Lyme Disease, the effects of which are incredibly similar to M.E.

I am considerably better than I was but am unsure whether or not I'll get get to 100% ever again.

I suppose the only thing I can say is to just keep on keeping on, try not to get stressed or angry because it directly affects your system very negatively.

Letting go of negative thinking patterns also helps, I'm still working on myself and try to suppress my 'inner fishwife' because she is no good for me or my health.

I got (uncharacterisically these days) very angry at work about a situation this week, the knock on effects have been awful, slow laboured tak, foggy thinking, wiped out energy wise...I really need to adjust my thinking in so many areas.

I truly hope that one day, we all get some answers and more importantly some relevant treatment for our respective diseases...sending you all strength and light. x

Triker

Incidently those of you guys with M.E. may wish to look at Lyme Disease as a possibilty...

I found that for me taking a garlic supplement allicinmax from Boots and antibiotics prescribed by my doctor who treats Lyme and M.E. patients ( Doxy and others) have got me back to functioning.

I also take low dose naltrexone which apparently helps your immune system which is shot to pieces in my case. It can help anyone with autoimmune conditions which both Lyme and M.E. fall under.

I also take magnesium and selenium when I remember.

Mojisola

Great posts, Dan and NEH. Good luck to you both. I'm always mightily impressed by the courage and perseverance of the MEers I meet, especially the younger ones.

NEH

DanE2010 wrote: »

And yes NEH sounds like we are very similar, got the old fighting spirit, im sorry to hear about the uni courses, but dont give up, you will find a way, the time may not be right at the moment (I dont know how id ever have the brain capacity/concentration to do a degree now I dunno how I managed it!) but there will be a time when you can so hold onto that.

No i've let that particular dream go, there isn't any jobs and the last stint at uni i am now left with the debt it cost me. Life's too short, uni wasn't for me and i couldn't take having to leave for a 3rd time.

Triker wrote: »

Incidently those of you guys with M.E. may wish to look at Lyme Disease as a possibilty...

I found that for me taking a garlic supplement allicinmax from Boots and antibiotics prescribed by my doctor who treats Lyme and M.E. patients ( Doxy and others) have got me back to functioning.

I also take low dose naltrexone which apparently helps your immune system which is shot to pieces in my case. It can help anyone with autoimmune conditions which both Lyme and M.E. fall under.

I also take magnesium and selenium when I remember.

I have Fibromyalgia and I am on LDN, see my previous posts on this thread....;)

Mojisola, I don't have ME anymore just the sister illness Fibromyalgia but your words bring some comfort to me

SadBunny

Wanted to post some suggestions . . . but I've read too long . . . now I'm ga-ga.
So much info - I am behind the times!
I've found some things that worked for me - but tooooooo tired to type.
(If I'm honest . . . ummmmmmmm - can't remember what they are.)
Was feeling a little better - so obviously had to overdo it.
There is hope - best wishes to all.

moneysaverboy

I've a good friend who has fibro and she reckons that if you look at it like having a glass of energy in the morning, most people have a big pint glass, but she has a small shot glass of energy, so by the time she's done all the necessary things like getting washed, dressed, making food etc. there isn't much energy left in her glass for anything else. She also says she tries to leave a little energy in it each day to help her get well (she's had it for about 15 years now). Her explaination of the energy thing really helpped me to focus on how different it is for someone with 'normal' energy levels to someone with m.e./fibro energy levels.

claiiiree

I havent read the whole thread, but I have had ME for a long time, since I was 13 or so, but am now managing it quite well, and a relatively normal life compared to what I was for a long time, including uni/disruprted school etc - I can relate to that pint of energy idea

clouty

My favorite analogy is that we with ME/Fibro have a really nasty bank manager. If energy was money, we have a tiny income and an even smaller overdraft, which if we make use of costs us 200% interest, while healthy folk only pay 20%

deathvalleydemon

I have M.E/fibro, both confirmed by my rheumatologist.

M.E after a bad virus/infection and the fibro due to a serious accident.

I long to go back to the way i used to live, but my rheumy said that i should "kiss goodbye to your old life because its gone for good".

clouty

Your rheumy may be overly pessimistic, if current research pans out. For instance, following anecdotal reports that ME/Fibro patients have recovered following chemo treatment for cancer, there's a group of scientists getting good results in us with Rituximab, a chemo drug.

Unfortunately, the status quo for ME/Fibro is that we have inappropriate illness beliefs, which is tosh as those who have it and know us are aware. However that is the current thinking in most of the NHS, and also in parts of the States. Any research showing viral and retroviral connections tends to be jumped on. In the early 90s both in the US and in New Zealand, a retrovirus was found in us and even photographed budding from cells by electron microscope, plus both groups found antibodies. This research was squashed, and the American researcher, Elaine Defreitas, had her career destroyed.

That was before we were all connected by forums like this. If you are interested at all in the current struggle for understanding and effective treatment, have a look at http://treatingxmrv.blogspot.com/ This time they will find it harder to suppress the research!