Mobility problems

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Mobility problems

Postby Planet of my own! » Wed Aug 20, 2014 8:33 am

Hi all, I wonder if my lower back/ hip/ leg/ feet pain is really all linked to fibro as it has progressed over the last few years.
I've had various tests all resulting in clear, so told it's linked to fibro. Walking and standing are really difficult. I use a stick, buttery to limit this. I also use a wheel chair to get about when needed.
If I've been on my feet or tired mentally or physically my body seems to shut down. I then struggle to stand. My legs feet weak, stiff and heavy all at once along with pains down from lower back.
I get exhausted even in a wheelchair and just want to lay down and sleep!
This is so frustrating. When I use a wheelchair I need to get out and walk regularly, then desperate to sit down! If I sit in I get very stiff quickly!
I did used to be very embarrassed of using aids but now I know I need to except I've got to. I feel like people think I'm a fraud because they see me walking unaided, then in a wheel chair, I can't get my head around it, let alone other people who don't have this!
Just don't understand how it's progressed when this is supposed to be non progressive.
Any support very welcome please, feeling a bit lost
Thank you
Deb xx
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Re: Mobility problems

Postby denys » Wed Aug 20, 2014 9:04 am

Deb if you have raised the issue with your doc and been tested with everything coming back to fibro then it probably is, fibro isnt progressive in as much as it wont kill you but that doesnt mean things cant (and dont) occasionally get worse.

Pacing is so very important and so walking then resting is the right way to manage things, everyone's fibro is different and if doing things the way you are helps then thats what is important.

That said if things appear to be getting worse consistently then go back and explain things to your doc again, maybe there is something they havent considered and now is the time to check.
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Re: Mobility problems

Postby Theresa34 » Wed Aug 20, 2014 4:06 pm

I am the same way with mobility! One minute I'm walking fine, the next I'm struggling due to various aches and pains. It confuses me never mind anyone else lol Today I felt quite a bit of pain, having restarted my Pilates, but I pushed through it and managed the housework. Once I started moving I was ok. Sometimes I cant push through it but when I do I'm a happy bunny. It means I own and the fibro lost :-D
I am a fibro fighter not a fibro sufferer. I will keep fighting from the minute I get up til the minute I go to bed.
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Re: Mobility problems

Postby Planet of my own! » Wed Aug 20, 2014 6:02 pm

Thanks Theresa, my leg pains just won't go away it's such a bind. Today I have 2 friends for tea, been stood preparing food, ( only for a short time as chose to slow cook a chilli) then had to lay down with pain. Then up and tried again, did abit more but my back is not being kind.
But seeing these friends that I haven't seen in months is worth it. We met at school and are now all 42, although our lives are very different now it's great to catch up still after all this time.
They are understanding so that's a big help, we don't get to have our late nights any more. I've tried that and a week later I'm still recovering!
It's hard when you look ok on the outside. Although sometimes I think I'm hiding it and my husband and children know me too well. They are a great help and make life worth every minute.
Do you think pushing through pain is a good way?
I have had 'pacing' imprinted on my brain. I've tried pushing and that seems to fail big time. I feel sick, shake and feel like I'm gonna fall over!! But I may try pushing with a little p... :-D and see how I get on.
Thanks for your support
Deb xx
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Re: Mobility problems

Postby Theresa34 » Wed Aug 20, 2014 7:39 pm

Well a lot of people will say not to push yourself, it's the worst thing for you. But I do push. And for me it works! I feel better in myself and the pain and stiffness eases. Now there are days where I can't push but the only way to know is to try . If my body clearly can't push ie sciatic pain or cramps then I listen to it. I tend to feel more pain & stiffness when at rest.

Secondly do you have a contact number for an occupational therapist? I have only spoken on the phone to one who assessed my needs so she could provide me with things to help me around the house. I have a perching stool for if I'm hurting when cooking, I can sit. You can use it for ironing too. They offer a range of things for free x Good to hear you had a great time :)
I am a fibro fighter not a fibro sufferer. I will keep fighting from the minute I get up til the minute I go to bed.
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Re: Mobility problems

Postby dazzleship » Sat Aug 23, 2014 8:58 pm

Hi Debs - sorry to hear you're having a bad time of it. :snowgrumpy:

I know what you mean about wondering what other people think - the problem is that non-Fibro people (and probably us, before we got it ourselves!) don't understand illnesses that fluctuate between bad and not so bad. I try not to worry about what they think - it's hard but you have to just concentrate on what you need and never mind them :-)

I still dont understand myself about the 'non-progressive' thing so I understand your confusion about that. of course this Fibro gets worse, I would defy anyone to say it doesn't! but I think someone on here (sorry cant remember who) said it isn't progressive cos it doesn't actually damage anything. still doesn't mean it doesnt get worse though.

things like 'non-progressive' just make this illness sound like it isn't anything serious, yet as we all know it is. it's indescribable having to get used to needing help to get into bed or to put clothes on and off, or to be unable to get up the stairs at home. or to not be able to go out without needing crutches, or in your case (and others) a wheelchair.

I just wish there was some way to make other people understand what we go through.

sorry - I just realised after reading my post that it doesn't sound very helpful to you at all. I'm trying to be helpful but I don't think I am really. :roll: so here's a cat to cheer you up :cat2:
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Re: Mobility problems

Postby Planet of my own! » Sat Aug 23, 2014 10:10 pm

:-D thanks Dazzleship, the cat gave me a smile as I read your post.
You are a help by being there and understanding.
I am in a better frame of mind now but pain wise I am screaming. Today my husband, daughter and I have been painting in the garden, decking, fencing etc. it was extremely painful and exhausting, but I took breaks and battled with the pain. I feel so stiff now it's untrue, but our garden is looking really lovely. It made me feel like I actually achieved something today, even if it was small.
Today was a good day :-) still a long way from finished but it has taken a big step. My mum does planting and gardening for us as she loves it. Although she suffers with arthritis she helps us loads with gardening and ironing, wish I could have her energy and she's 30 years older than me!!!

My husband has young onset Parkinson's disease so progressive is something I'm familiar with, but really don't need for me too.
But after chatting to pain specialist I get my condition a bit more now. He tried to explain that I have fibro, cfs and m.e (although like to understand if m.e causes nuerological symptoms) and because ive got to such a bad stage it will take a long time for my body to get back out of it, although it's possible to get there. So I'm trying to except this and hope it helps my body deal with things better.

Not sure what I've done today helps but I feel mentally good for it xxx
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Re: Mobility problems

Postby denys » Sun Aug 24, 2014 7:58 am

I think being able to see some positives (like looking at your garden) always helps because as you said it is an achievement and a pretty one at that :-D :-D :-D :-D :-D
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Re: Mobility problems

Postby dazzleship » Sun Aug 24, 2014 10:36 pm

ohh, I'm so glad you had a good day in your garden :-) you have every right to feel proud and feel that you've accomplished something, because you have. sometimes it's worth the pain and tiredness afterwards, you know?

so sorry to hear about your husband's illness. here's a :hugs: for you

oh and another :cat2:
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Re: Mobility problems

Postby Planet of my own! » Mon Aug 25, 2014 9:18 pm

Thanks Dazzleship and Denys, yes our hard work paid off and although today it's been raining I was able to look out and feel pleased. Also took time to rest today. My body thanks me for that,
My daughter has a physio who has worked with people with fibro, he has said to her (she has hyper mobility in knees) that she needs to work on her recovery time. She must make the most of life and enjoy time with her friends and doing activities that she wants, but remember that recovery time is not all about crashing out and not moving.
So I have tried to take a little big of this advice, today on a recovery day I have rested but also walked the dog or took a stroll I should admit! But I still felt positive when walking even though in pain. Not always going to be easy but I'm try
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