Advanced search

Mumsnet has not checked the qualifications of anyone posting here. If you have any medical concerns do consult your GP.

Anyone With Any Experience of ME/ Chronic Fatigue Syndrome?

(15 Posts)
victorianhomedreamer Tue 09-Dec-14 12:24:09

Message withdrawn at poster's request.

VenusRising Tue 09-Dec-14 12:27:38


PositiveAttitude Tue 09-Dec-14 12:36:32

Yes, my DD3 suffered severely from the age of 14. She is now well on hte road to recovery at the age of 20. SHe was about as bad as you can get, and recovery has taken years, but she is good now as long as she manages her energy. What do you want to know?

KatyMac Tue 09-Dec-14 12:39:20

& I always took life-limiting to mean you're going to die, well you are unlikely to of 'just' ME/CFS roll on my 20 year anniversary of diagnosis

victorianhomedreamer Tue 09-Dec-14 19:17:08

Message withdrawn at poster's request.

KatyMac Tue 09-Dec-14 22:01:12

Counselling & drugs basically

A form of CBT plus normal talking therapy

Learning new ways of thinking and taking Prozac while that's happening

victorianhomedreamer Wed 10-Dec-14 11:22:38

Message withdrawn at poster's request.

KatyMac Wed 10-Dec-14 11:29:42

TBH learning to live differently helped me - but I used a systems version of conflict management, greatly helped by rich pictures and systems diagrams

I make spreadsheets & flow charts of 'un-knowns' then I always had a plan

Learning 'not to cope' was important too

KatyMac Wed 10-Dec-14 11:30:47

Mindfullness also helped

PositiveAttitude Wed 10-Dec-14 11:35:31

We used a strict pacing programme, which worked well. The first step was to get DD to not be sleeping up to 23 hours a day. That was so hard and we had 2 weeks of keeping her awake and only letting her sleep at restricted times. It felt like we were torturing her, but at the end of the 2 weeks things started to turn around and that was the first big step. It was worth doing it!! So many other little things we did. DD was very sensitive to her head being touched. The consultant likened it to her feeling as if she had massive injuries and so the body was sending "do not touch" messages to the brain, so we needed to de-sensitise her head by light, regular massages, building up over a few weeks. That also worked. At work at the mo so cant stay around long, but might come and add some more bits later if this is the sort of thing you want to know.

There is the Lightning Process, which we looked into, but we could not afford it and we were really unsure that it would work for DD. We knew others that it worked for really well, but DD always had a very positive outlook and it seemed to do best with the people who had got into the downward spiral of depression and feeling as if you would ever get out of it.

Letitsnow9 Mon 29-Dec-14 21:53:33

People do sometimes due from it. Watch voices from the shadows

Letitsnow9 Mon 29-Dec-14 21:53:50

I meant die not due!

mummybean84 Fri 02-Jan-15 11:37:58


My Husband has suffered from ME for the last 7 years. ME is in fact a cause of death (as stated on death certificates) for many patients as it can case various problems (often related to heart function). And it also as you say very life limiting indeed. I can vouch for this having had a husband who is often unable to climb the stairs/eat/talk let alone leave the house.

Anti depressants wont treat the symptoms of the illness just any associated depression. Likewise CBT only helps you cope with the diagnosis rather than the physiological illness at the root of it.

My Husband has sturggled since our daughter was born as it has brough home just how much life we are missing out on and a constant awareness of how his illness effects our whole familys quality of life.

The best thing i can suggest it to be there as a friend and support them as most people with ME experience the loss of friendships due to their inablility to socalise. Friends often stop calling and messaging and it becomes a very lonely life.

Also having contact with other sufferes is a big help as they can truely understand so maybe suggest joining an on line forum such as Phoenix Rising this is also good from the point of view that there are lots of interesting articles on reasearch papers, treatments etc that are good to read and may be a really good reasource for you too.

Finally I would say practical help. Life is a struggle because something as small as mowing the grass, getting shopping in etc can be impossible. You cold offer to cook a meal maybe? It gives the message that

1) You care
2) You understand the physical limitations of the illness

The second is important as lots of people are still stuck under the outdated view that this is a phycololocial illness which has been widly discredited but is still ingraned in the minds of many people who dont know any better.

Well done for being such a good friend I wish we knew a few more like you!

Groovee Fri 02-Jan-15 11:41:44

I have fibromyalgia and chronic fatigue.

I went on a lifestyle management course when I was about 7 months post diagnosis. It helped me learn to manage pacing myself. I go through spates of feeling great and then weeks of being unable to move or cope with the pain.

rumbleinthrjungle Wed 14-Jan-15 23:01:06

I have basically autonomic failure, which has bits in common and some crossovers with ME.

Pacing and lifestyle changes are the only things that have really consistently helped, but it's been a case of living around it and walking that fine line of knowing when to ignore it and carry on and when to listen to my body and stop. Vitamin B injections helped during a really bad patch. Good symptom management helps. Recently I was diagnosed with gluten and diary intolerance as well and those symptoms were being discounted (by me) as just part of the general mess. Getting those out of my diet has made a small but appreciable difference, so it's worth checking that there aren't minor issues lurking around underneath. Learning to be patiently and politely bloody persistent with health professionals also helps. In the process of getting diagnosed and getting treatment that actually helped (started with a misdiagnosis of Fibromyalgia and passed through a couple of other red herrings on the way) I booked a one off private appointment from time to time with a Rheumatologist or Neurologist to get a proper conversation and referral onto the next investigative step, and each time that moved things along again. It took about two years to get to the right medication that improved things.

But basically there are the good days and the not so good days and that's how it is, and it's learning how to handle both emotionally as well as physically.

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now