Everyday pain & tiredness : Fortunately... - Fibromyalgia Acti...

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Everyday pain & tiredness

SueSto profile image
7 Replies

Fortunately I am not alone. I have a husband, two grown up children who live locally and three grandchildren. But sometimes it feels as if I am alone because I don’t think anyone of them understands the pain I am in, even in good days the pain is there. The fatigue is also a big thing. Im taking pain killers (tramadol) which I know will stop working at some point. My dr has more or less signed me off until I get to that point. Don’t know where I go from there. I am retired so don’t have to worry about work or finances. But I would like to do so much more with the grandchildren than I do. I generally just keep going and try to hide the pain from the family. I fall into bed at the end of the day when we’ve had a family get together and although I feel as if I’m sleeping I’m tired again by 11 am next morning and falling asleep in my chair. It’s nit what I planned fir my retirement.

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SueSto
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YASMINTINA profile image
YASMINTINAFMA UK Volunteer

Snap I totally relate it’s so frustrating not what we have signed up for, I found the forum a helpful place to chat with lots of others with our condition, healthunlocked.com/fibromya... this is helpful link if you would like to lock your future posts , I do hope you post again I am lucky too have family lovely friends but I totally understand that people do not realize the pain we are in like you say even better days , sending my best wishes xx

robpw profile image
robpw

I get what you mean about main on a good day .. think the hardest thing is trying to explain to your doctor what that pains like , I also have fatigue . I am not ready to retire yet .. I want to qualify as a solicitor so I have to grin and bear it ...

Well, that's the good thing about this place - even though we can't give you an actual hug we can certainly empathise. Sometimes when I wake up I wonder what on earth I went to bed for - I rarely wake up feeling like I've had a good night's sleep. The trouble is my brain still thinks I can do everything I did before - so I recently got trapped in the living room whilst trying to move a bookcase on my own, honestly I was to frustrated and angry waiting for someone to come and 'rescue' me!!!

For me the only thing that really works is strict pacing - do what I know I am ok with and no more unless there is no choice. By pacing strictly I avoid too many bad days - I don't want to end up with more bad than good, nor do I want to end up bed ridden. It is all too easy to push ourselves too far - as women we are used to multi tasking and taking the burdens of our families, but a chronic disease like Fibro means something has to change.

The family probably don't understand what you are going through - I don't think mine does either, it's pretty much an invisible illness until we are flat on our backs. The trick is to keep the days when it's just you and hubby as quiet and peaceful, let him do the shopping for example. Do you have anything like knitting or crochet? Maybe look at less strenuous things you can do with the grandchildren - if you live somewhere near a nice place for picnics etc you could take them there, let them run off some steam while you rest a bit and get their food ready. It really is about changing the way we look at our lives and of course our expectations.

One day at a time, but do share with the family how you are feeling, and go back to your GP and ask for help - a pain management course might be beneficial, they teach about pacing etc as well help with strengthening exercises and relaxation techniques.

Sending gentle hugs. xx

Sarahvit profile image
Sarahvit in reply to

@Jools61 this past Sunday my alarm went off I was in a light sleep and I felt rested. It has been years since the last time I felt that good after sleeping. I also woke up with no pain to speak of. It felt great to feel human again. I just had to share that before I forget and loose that memory into the fibro fog. Hugs 🤗

in reply to Sarahvit

That's so great, glad I'm not the only one with a terrible memory!!! I hope you didn't overdo it in celebration!!!! xx

Sarahvit profile image
Sarahvit in reply to

Oh it was short lived but it was nice to feel human again. With fibro and company it is a rare moment to feel that way.

glo100 profile image
glo100

Oh duc I really no where yr coming from I'm the same in the day I feel so tired I try to lie dwn and have five which turns into an hour my family are the same I hv three children three grand kids nv c much of my son and daughter but my youngest son is 37 he's brill ant he's always here for me and takes me r er where he's my carer and my best friend he understands everything wat I'm goin thro plus my other illnesses. We all think when we get to retire we are going do everything we wanted to do and places to go I'm 63 this week not there yet but fibro as stopped me doin all ta nv mind I'm trying g my best to get on with it you will do to take care luv glor x

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