Always feel tired

[JenJaf]

Hi I have fibromyalgia and I know it’s a symptom, but I’m struggling with it, I feel like I can’t cope with it, I have no energy, I just feel weak, I’m wondering how do you cope with it?

[Judithdalston]

It is very disabilitating...those you live ( or work) with are unlikely to know what it is like to live with continuous pain, and extreme weakness and tiredness. I still find it very frustrating that I can do so little physically , and sometimes mentally, and rely on others to ‘do their bit’ like vacuuming, making meals or taking away the laundry... my housekeeping standards have lowered considerably! I make myself walk daily for exercise and to get out ( difficult in the cold which makes symptoms worse).... in summer split 2x5,000 steps a day but in winter only one as it’s too dark to get second set in. I read in a hot bath for enjoyment, watch tv quiz shows to show my brain isn’t all mush, get up late.... I do jobs earlier in the day like preparing evening meal, or shopping. So find things you enjoy, get people helping you, lower standards, do things in moderation when you can...don’t force anything as it will make you worse for weeks. I find hot weather ie winter hols relieves symptoms but then get kicked back on return....but the holiday memories and knowledge you could do things a great restorative.

[Hidden]

I sent to see rheumatologist on 2nd,first time seen in 4 years,I said about extreme fatigue,he is organizing physio and hydrotherapy,if you can get some sessions it WILL help you get mobile and less tired..I've done it so many times over 18 years of fibro,,it will help you sleep better and you will meet people who have similar problems.

[Judithdalston in reply to Hidden]

Depends where you live if you get such support...nothing where I live offered by nhs. Tried to find tai chi class, which I did years ago, but only one started at 10 am...far too early for me unfortunately....thus the walking.

[Hidden in reply to Judithdalston]

I travel 10 miles each way for therapies,you have to push yourself hard and not give in or you will just deteriorate..where are u in u,k hun? Maybe I can help.

[JenJaf in reply to Hidden]

Isle of Wight my lovely

[Hidden in reply to JenJaf]

Maybe look to mainland Southampton for help.you are cut off there really .your g.p must help you it is their job. I believe the catamaran is a quick journey off the island..it's a lovely place to be but not if you are ill long term.

[Judithdalston in reply to Hidden]

North Cumbria...I got acupuncture from NHS for leg pain/weakness just before fibromyalgia diagnosis from physiotherapist when that failed, but only other support was very bad information evening where staff trying to support folks who had had fibro for 20 plus years and obviously knew very little about it, and associated problems.

[Hidden in reply to Judithdalston]

Yes its very unfortnate unless there are medics with good knowledge on fibro your stuffed!!that's y i travel to city hospital in Manchester they have a specialist centre for ALL rheumatoid issues and the most handsome rheumatologist,sadly batting for the other side.

[JenJaf]

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