Anyone else with M.E and Fibro?

[totsy]

Hi all,
I've not ben on for a while, my m.e and fibro has deteriorated badly and basically from being quite active i cannot walk far at all
This means I've piled 4 stone on and struggle now to get my bloods down, last visit to dn she said she may try me on a different insulin to see if it will help,
Just wondered if anyone else is in same boat as me?
thanks

 

[CarbsRok]

Hi Totsy, I have ME and the easiest way not to pile on the weight is to reduce food intake. Have you been seen by an OT and taught the art of pacing? If not please ask your GP find you a specialist OT who deals with ME. Hope things improve for you soon.

 

[rowan]

Yes, I've got ME and fibro, and as CarbsRok says, you need an OT to help with pacing, it helped me enormously! Was there a trigger that made it worse?

 

[totsy]

Hi,
yes I've beeen doing pacing,, basically since about 15mnths ago when diagnosed with fibro I've had total exhaustion,muscles torn for no reasons in calves, achilles tendonitis , severe stiffness and now frozen shoulder,no trigger at all

 

[Tweetypie]

Hi Totsy,
Sorry to hear you're suffering. I have had ME in the past and went into remission. However, since my diabetes diagnosis and some very traumatic events in my life, it has come back with a vengeance, however I am still able to get about in very small amounts. I am looking into various therapies including osteopathy. I find I am massively effected by stress and anything that can help with that gives improvement.
It's a long old road, got to keep on plodding onwards, but things will get better x

 

[Tweetypie]

Just re read your post Totsy. You say that you cannot walk very far - but you can walk? This is important because it means you still have the will to move. Use your breathing andset yourself tiny goals - don't walk aimlessly, instruct yourself that you will walk say to the first lamp post and back, then the second, then the third and so on. Keep breathing and focussing. This will help build up your strength again. I love walking and it is so good for you, but I am struggling too, due to a knee injury and back problems, basically I am back to square one again but keep pushing forward, one day at a time, one breath at a time etc. This is your journey, you will get there x

 

[Totto]

Hi all,
I've not ben on for a while, my m.e and fibro has deteriorated badly and basically from being quite active i cannot walk far at all
This means I've piled 4 stone on and struggle now to get my bloods down, last visit to dn she said she may try me on a different insulin to see if it will help,
Just wondered if anyone else is in same boat as me?
thanks

I was in a similar boat some years ago due to un-diagnosed hypothyroidism. I'm not saying you have hypothyroidism but it is very common and often un-diagnosed as they tend to rely so heavily on TSH tests.

 

[totsy]

i have underactive throid got it at 21 so had it half my life x ty for answering

 

[Totto]

i have underactive throid got it at 21 so had it half my life x ty for answering

Levo didn't do much for me. Now I'm on NDT and have a fight with my doctor every time I've had a blood test as my TSH is suppressed. I need the dose I'm on or the pain and fatigue and all the rest returns. Have you ever tried NDT? Many of us with hypothyroidism seem to do so much better on NDT compared to Levo.

 

[CarbsRok]

Just re read your post Totsy. You say that you cannot walk very far - but you can walk? This is important because it means you still have the will to move. Use your breathing andset yourself tiny goals - don't walk aimlessly, instruct yourself that you will walk say to the first lamp post and back, then the second, then the third and so on. Keep breathing and focussing. This will help build up your strength again. I love walking and it is so good for you, but I am struggling too, due to a knee injury and back problems, basically I am back to square one again but keep pushing forward, one day at a time, one breath at a time etc. This is your journey, you will get there x

Unfortunately with ME this strategy doesn't work. When ME sufferers have a flare up it is very important they rest as much as possible, then start with doing a task for 10 minutes and stopping. It's very important not to over step the invisible line.
The best way I have found of describing ME is watch the Duracell battery advert on the TV.

 

[totsy]

Icant walk far with fibro pain ,
very true with the battery theory,the spoons theory is a good one too

 

[Tweetypie]

Unfortunately with ME this strategy doesn't work. When ME sufferers have a flare up it is very important they rest as much as possible, then start with doing a task for 10 minutes and stopping. It's very important not to over step the invisible line.
The best way I have found of describing ME is watch the Duracell battery advert on the TV.

I may not have made my point correctly. I totally agree with what you're saying. I am actually in the process of doing the same thing myself, building up strength gradually, but resting a lot and not pushing myself too far. I do this by setting myself very small goals, like saying today, I am going to walk to the corner and back. Then after a week or two, I'll set myself a task to walk a bit further and so on. It is a slow process for me too and I know only too well what happens if I push it too far.