CFS/ME Help

Mojisola

Errata wrote: »

Pacing helps some, but not others, but people shouldn't be put off trying something that has helped others because some people say it has made them sicker.
ME/CFS is a difficult area, little research has been done and now even less is being done because of death threats to researchers.

Our group collects information from the members every year about various things, including what people have tried and whether it has helped, made no difference or made symptoms worse. Everything reported has ticks in all three categories!

Finding what suits you is very individual.

Gerisomar

hi, I have had M.E. for 18 years and although I am better than I was I have to be really careful how I manage my energy. I still can't tell from one hour to the next how I will be and it is not unusual for me to climb the stairs on my hands and knees and slide down on my bottom.! I was told at the hospital to treat my energy like a bank account and make a deposit before you make a withdrawal. However I am finding things a bit harder now. My mum, who was my rock died in Dec 2010. My dad who is 82 has limited ability and I am trying to look after him and the house. Coupled with that I have recently had my assessment for Incapacity benefit, I could barely walk that day, however after reading lots about it I am not hopeful. I find pacing myself is the only thing that helps. I do a bit and then sit or lie down for a rest and wait for the energy to come back. It is not ideal but it is the only way to cope.

gingergee

Hi, I have SLE (different, but similar). I struggle everyday. A major trigger for me used to be Aspartame. I used it as a sugar replacement so switched, but didn't realize its added into everyday things like juice etc. Id see your doctor again, but ask about it. I found it reduced my "flares" slightly when I watched what I ate. Now nothing helps and I am immunosuppressed for a month or 12!!!!
Sending you some spoons xxxxx

RazWaz

I've had Fibro for around 5 or 6 years now (though only recently diagnosed). The painkillers and sleeping tablets are the only things I think are worth bothering with for me.

I've started a new treatment today though, kitten therapy! I've just adopted the most adorable 9 week old and I've felt fine all day and really enjoyed watching her run and play and explores her new house.

She also seems to be able to tell where my sore spots are (I think cause they are warmer) and her curled up purring against them is a good distraction.

luminated

Mojisola wrote: »

I've had ME for about the same length of time as you. I've improved a lot over the years but still only live a half-life compared to what I'd expect to be doing if I was well.

I know a lot a people with ME through the local support group and their stories vary a lot - a couple are still bed-bound after years of trying everything on offer, a few have made a good recovery but have to be careful not to overdo things and relapse, most are somewhere along the spectrum in between.

The most important thing for most people seems to be pacing - always listen to your body and try to never spend 100% of your energy. Always keep a bit back for healing.

There will be emergencies when this won't be possible or special occasions when it's worth overdoing it but accept that you will be worse for several days afterwards.

After 30 years, you've probably done this but accepting the illness and the limitations it causes is often a turning point. That doesn't mean you give in but that you are realistic about what your health status is and what is practical.

It goes against the grain because most people want to "fight" their illness, "beat it", "not give in" but for ME, that's just about the least helpful way of coping with it.

I also have suffered ME/CFS for over 30 years & put myself in the severe category & if I'd the energy I couldn't have written a finer reply than this from Mojisola. I have tried everything & I mean almost everything. More so in the earlier days & spent many thousands of pounds trying to find a cure, or at least some help. All a total waste of money.

So I learned to live with it a very long time ago & pace (not exercise) myself. However occasionally I rebel and go past my point but always pay for it.

I now have other health issues (cardiological & neurological) to take my mind off the ME/CFS especially when one has been life threatening & I'm still not out of the danger zone.

ME/CFS rarely kills you but it sure does kill off your life as you should have expected it to be. At least I get HRM & MRC with a free wheelchair with power pack soon to be upgraded. Surprising how excited you can get about this type of thing :T

Good luck & the same to all on the forum who suffer the condition/problem/curse.

Mojisola

luminated wrote: »

I also have suffered ME/CFS for over 30 years & put myself in the severe category

I now have other health issues (cardiological & neurological) to take my mind off the ME/CFS especially when one has been life threatening & I'm still not out of the danger zone.

I'm sorry that you're so badly affected. We have some members in our support group who are severely affected and their lives are so limited - it's very sad that so many years have gone by without this horrible, physical condition being investigated with regard to treatments, cures or prevention.

How does the NHS cope with you when you have treatment for your other problems? Most people report that staff don't understand the impact ME has on their patients and will try to insist that they do things which would be expected of patients, say, recovering from a heart attack and don't take into account the effect this would have on ME symptoms.

luminated

Mojisola wrote: »

How does the NHS cope with you when you have treatment for your other problems? Most people report that staff don't understand the impact ME has on their patients and will try to insist that they do things which would be expected of patients, say, recovering from a heart attack and don't take into account the effect this would have on ME symptoms.

Well I've had a heart attack a few years ago, then two more last year both in the same day. On that day I needed (Cardiac Arrest) resuscitation twice once before & once in an emergency operation involved later. On top of the ME/CFS it was pants as it set me back a lot & took about nine months to get back to a more reasonable level of health but with brain damage (lack of oxygen when my heart stopped) that has b*ggered my cognitive functions even more.

But I'll stop there as my GP, Nurse, OT, Physio, Consultant & Hospital visits are littered through my calendar :rotfl: I guess I cost the NHS a LOT of money.

My experience with all levels of NHS staff has been really good. The only negative aspect is that when you are admitted into hospital they don't really check out enough to see how capable you are of looking after yourself. My wife helps me with showering but when I asked if a nurse could help me I think they though I was being a bit pervy!!!! Also mobility as I needed to get help every time I wanted the loo as I couldn't walk from my bed to the toilet. Because of my bladder/prostrate problems I need to pee about 20 times, or more, every 24 hour period. In the end after a few hours they moved me to a bed next to the toilet so I could make that with my two walking sticks.

But ME/CFS really is a **** & I always said, when I was younger, it doesn't normally kill you but it sure does **** your life big time.

flipflop29

Hi, I too have ME/CFS. I saw someone mentioned the Amygdala Training course thing - I did this a couple of years ago when it was a fair few bob cheaper than it is now! I found it helpful, but in no way is it a cure. It made me realise I'd got stuck in a rut of getting petrified of my symptoms and adding extra exhaustion in by stressing about them, especially when I had to go out and do something I knew would be difficult and exhausting. It taught me how to avoid that extra draining level of stress, and I found the meditation stuff really useful - I don't like 'hippy dippy' things, and it was quite basic and not hippyish at all, and it did help me get the best out of my functioning.

But no way is it a cure, and I think anyone considering it shouldn't expect too much.

My main hope now, having been sick for over 20 years, is that there's finally some proper medical research projects going on. I don't expect any new treatments overnight, but in the next few years? Maybe.

lady_in_need

luminated wrote: »

Well I've had a heart attack a few years ago, then two more last year both in the same day. On that day I needed (Cardiac Arrest) resuscitation twice once before & once in an emergency operation involved later. On top of the ME/CFS it was pants as it set me back a lot & took about nine months to get back to a more reasonable level of health but with brain damage (lack of oxygen when my heart stopped) that has b*ggered my cognitive functions even more.

But I'll stop there as my GP, Nurse, OT, Physio, Consultant & Hospital visits are littered through my calendar :rotfl: I guess I cost the NHS a LOT of money.

My experience with all levels of NHS staff has been really good. The only negative aspect is that when you are admitted into hospital they don't really check out enough to see how capable you are of looking after yourself. My wife helps me with showering but when I asked if a nurse could help me I think they though I was being a bit pervy!!!! Also mobility as I needed to get help every time I wanted the loo as I couldn't walk from my bed to the toilet. Because of my bladder/prostrate problems I need to pee about 20 times, or more, every 24 hour period. In the end after a few hours they moved me to a bed next to the toilet so I could make that with my two walking sticks.

But ME/CFS really is a **** & I always said, when I was younger, it doesn't normally kill you but it sure does **** your life big time.

Hi i have a son whos had cfs/me for 3 years hes 24 now and yes its ****** his life up lost his job due to if i cry hes in so much pain cant do what all his friends do his life as pasted him by at a young age

luminated

lady_in_need wrote: »

Hi i have a son whos had cfs/me for 3 years hes 24 now and yes its ****** his life up lost his job due to if i cry hes in so much pain cant do what all his friends do his life as pasted him by at a young age

I am sorry to hear this & sorry for all those who suffer the same thing. I'm sure it must be worse for the carer/s, family & friends as it must of been in my case for my wife. I just feel numbed & desensitised by it all as far as me & my body after all this time.

I preach pacing but not the one with exercise. I found out my limits a loooong time ago but now & again the rebel in me says b*gger it & I push through but always, every time, 100% pay for it. But hey you have to experiment a bit now & again :T