Hi all I am new to the site and would appreciate any advice anyone has to help me come to terms with being in a wheelchair as fibro so bad x

[angie76]

i have struggled for the last 5 years and I am running out of hope so any advice would be great thankyou guys x

[snuggleowl22]

Hi there I'm in same situation I'm in my 11th year and in wheelchair, it makes me feel useless but I have started think of it at least I can still get about with my family it is hard but just have try and come to terms best way you can and make it fun. My brother always sends me down a hill free wheeling lol he rite behind me so cant get hurt bit is funny n he does mad things with me and we laugh n joke that was one of ways I found to except it, and also tht the wheelchair was apart of me n if tht was a problem to others then tough cause it still me at end of day. Hope this helps you look at it bit diff, n b happy answer any questions but most of all smile n try keep your chin up xx

[angie76]

Yeah i am in my 5th year I was handling it okay until the wheelchair now i am too paranoid to go out. I have a wonderful husband and 4 kids they allways try to make me laugh n that bless em it is just so good to speak to people who completely understand me thsankyou soooo much hun I am really going to try and go out this week that is the goal I have set myself go out for 1 day lol sounds easy don't it when you read it lol thanxs I let you know how it goes xx

[snuggleowl22 in reply to angie76]

Hey, Yeah it does the first half hour think you goin b so concious of everything are they looking at me etc, but they not it wat you think I was like tht and still do wen having rough day, hey you got just look beyond that and think wow i goin out and I goin have a brill time with my family and you will love it and b so happy and I know deep down you can do it hun, yeah pls do let me know and just do your best and try and have loads fun.

P.S have you got memory cushion for your wheelchair, i found it brill n makes it lot more comfy to sit in.

[fairycazzie in reply to angie76]

Hi ther Angienumber 76. Welcome to the site of absolutely wanderful ppl all with different things going on.(velly velly supportive )

You are so lucky like i am with a hubby and 4 kids and who help so much!

I do not have a wheelchair but i do have a stick! my feet hurt a lot now and buying insoles i see like buying carpet underlay lol .. ohh it will be very difficult at fist to adapt just having our illnesses is difficult and we all gone over hurdles and coped in many different ways. i never expected to be struggling upstairs and never thought my feet would start hurting now. who knows whats next! There is no age to a lot of things and those who look and stare some times they possibly just curious but do not have the bottle to ask. I walked round a footy Gala for my 11yr old daughter with mi stick and no one said a thing or even asked about it..well... it will come in handy if anyone makes fun hehe.. i got a microscopic one and put lots of diamantis on it as i like Glitzy xxxxxx You take care and do like Aura did when out with hubby heheeh so funny.. We all here to have a chat anytime. xxxxxxxxxxxxx

[aura2]

I love my wheelchair .... NOW .. Took me ages to come to terms with it.. At first I felt like everyone was looking at me I had totally lost me ! I spent lots of time sitting there behaving like I had no brain ... Once I came to terms with my new legs my life changed I enjoy time out with my family and friends holidays are fun .. I now see it as just that my legs.. I take no notice of people looking , sometimes I smile at them or wave .. Ooops they dont like that ............ Enjoy going out and b######## to those that dont understand ... One time I was out shopping with my hubby and getting really angry because he was following me ,when I told him to stop following me he laughed saying I have no choice I am pushing you lol I cried laughing ....

[angie76 in reply to aura2]

lol that's hillarious bless him ha ha well yes it does feel i have lost myself I can't do anything i used to do and it's bloody frustrating as hell it's coming up to my 2 years marriage annaversary and i must say we were not expecting things to be like this but he has been so good he looks after kids and does all house work and shopping but i must say I can get really nasty to him i don't mean to my frustration just builds up till i can't take no more and then i let rip but he just brushes it off and we carry on lol

[Hidden]

Hello and welcome to our lovely forum Angie, great to see you here!

Any change in our lives is difficult at first and Fibromyalgia and all that comes with it is no exception, so don't be too hard on yourself. Some people adapt to wheelchairs better than others, it takes practice like most things. When you get a little more used to it, you will see it as a means to your independence and mobility. If you bump in to things don't worry, that's normal, just smile! Think of it like learning to drive, the hurdles are the same, but I don't advise you wheeling around roundabouts lol!

Give yourself time, bite the bullet and go out, the more you do it, the easier it will become.

You are very blessed with your lovely hubby and four children too, wow! As long as you have them by your side you can conquer the World Angie! Take care my dear!

[angie76 in reply to Hidden]

thanks hun yeah my husband pushes my wheelchair as i have really weak wrists and he needs L plates he has nearly tipped me out twice trying to get around people wh don't move out the way and he looked like he was ready to pop a lung when he had to push me up a hill lol battery pack is not much help and we have hills everywhere round here so he have arms like the incredible hulk soon lol

[getactive]

Hi Angie I am sure this must be really difficult for you I am having the same problem using a stick but we have to be able to get out as much as possible or we would go mad. Hope you soon come to terms with it. With much love and hugs Sue xx

[angie76]

yes hun i am starting to build up to going out again i have not been out for 2 years only to the doctors or hospital for appointments x

[aura2]

Angie I have been pushed into a mirror in M.S and knocked down a large displays of dvd,s in Smiths .. Ooops .. Enjoy your outings take it slowly took me a while xx

[Dexter2009]

The way i got used to being in a wheelchair was I had a choice be stuck at home all day concentrating on all the pain, or actually get out and about.My wheelchair was great because it meant I could actually lead a more normal life. I was only in one for a year but if I was going to be in one permanently I would definitely get a motorised one, they are great fun and you can race others around the supermarkets with them (I always won lol), although once I ended up in the middle of coca cola display covered in 2 litre bottles when my daughter was helping me (I use the term help loosely). I didn't find it embarrassing I just was so happy to be out I smiled at everyone. Good luck

xxxxx

[angie76 in reply to Dexter2009]

lol sounds like you had a riot there hun and thankyou I will suggest a shopping trip to my hubby later i think see if i have as much fun too lol x

[bertie121]

I have been out in wheelchair a handful of times over last twelve months rest of the time stay indoors. however I planned when I was first going to go out and went to our local tesco about 9 at night cause there's not so many people about. you then realize the person pushing u can't carry shopping too and then found trolleys that attach to front of wheelchair. then the fun of trying to work out how they work lol. but you just don't know these things if you've never had to use them. it definitely makes it better if the person pushing u has a good sense of humour like how many points for the next ankles they will clip!! good luck.

[josie46]

I have never met anyone with fibromyalgia that has to use a wheelchair. I would not want to have to use one, i do have severe pain and in the feet, legs feel heavy like lead, severe numbness in body, bad eyes, double vision and floaters, i wear glasses but they do not help, i have major problems sleeping. I have problems with walking sometimes as numbness in body makes the legs feel like lead, keep dragging left foot, body feels stiff but i will still walk, i walk home from pain clinic which is charing cross hospital and i live in chiswick, i find that walking helps to loosen up the body and this helps with the stiffness and pain. If i just stay indoors and sit on the sofa the pain is worse for me sitting down.

Also we have problems with muscle weakness due to not been as active before we were dx, maybe for some using a walking stick is better but for me i just put up with the pain, im in my forties and dont want this condition to take away my mobilty, it has effected my life big time, not working, dont go out socially, single and fed up with the condition but still carry on.

[nanny4 in reply to josie46]

Hi there,I must admit ,I was shocked when I read that fybro could cause people to have to use wheelchairs,I thought that it was only when people had inflammatory arthritis or ms along with fybro,that would maybe cause such severe problems.

My mum had Rhuematoid Arthritis and Ankalosingspondilitus,then she was dxd 30 years later with fybromyalgia.

She would not use a wheelchair as she felt,if she have in she would be stuck sing one forever,she wouldn't use a walking frame either,but I have to say she was told she would be confind to a wheelchair by the age of 40,she wasn't until she was 75 ,but she broke lots of bones leading up to the age of 75,as she had osteoparosis due to the meds she needed to take.

So she never did herself any good ,not useing a wheelchair ,it took lots of broken bones from her constant falls,before she would give in and use a chair.

If you don't mind me asking,do you use the wheelchair because of the fybromyalgia? Or do you have other conditions? I really had no idea that fybromyalgia could cause such problems.

Thanks in advance,take care Sandy.

[Hidden in reply to josie46]

There are many people with Fibromyalgia who rely on wheelchairs, mobility scooters, walking frames etc to help them around. It also helps their independence. Similarly there are people with wrist supports, leg supports, crutches, walking sticks and other aids. Fibromyalgia can be very individual and can affect us all differently, some can manage without any aids at all, whilst others need this extra support. If it makes life easier and more comfortable and means we can get out and about better, it makes sense to use these things. It's not worth risking falling over.

[Hidden in reply to josie46]

I must admit I’ve never met anyone or heard of anyone with fybro using a wheelchair I have osteoarthritis of the spine and knees I’ve been told the surgeons won’t do anything until it’s so bad I can’t walk but there is no way any surgeon is operating on my spine he’ll needs to freeze over first, but I do push myself I do potter about more pain if I sit too long definitely if I stand too long also but I didn’t realise people with fybro were using wheelchairs 😊💐

[nanny4]

I am a bit annoyed with my g.p he never said much about fibromyalgia at all,he said try these tablets and come back in a month,it is a good thing for me that I found this site,as I think from what I read,lots of doctors don't bother much with fibro patients as if it's all in your head,cos you can't see anything wrong.

I thought. before I came here that fibromyalgia,just meant aches and pains all over in the muscles,that is OBVIOUSLY not the case.

Sandy.

[tess10]

Hello everyone I am very new to this sight infact just joined half hour ago, I have been putting it off, as I have suspected over time my fibro will get worse,I have kind off been able to put it to the back of my mind, but reading other people experiances just brings to light what I already thought, its just a little scary. I turned 40 this year, have a great gp who believes due to past records I was probably born with it, so I feel lucky that it only really started causing me major problems 5 yrs ago and I was only offically diagnosed in 2009. it is taking me some time to get my head round it all, how did everyone else get there heads round it?

many thanks Ingrid

[hamble99b]

I met a lovely lady in her 70's, in a wheelchair, and with a big beaming smile on her face. I knew her daughter and the three of us were catching up. "I'm waiting to get my knee done" May said. Knowing how active she's always been I was puzzled at her cheerfulness. Then she showed me why... She was wearing red 3 inch heels! "just got them in a charity shop. can't walk in 'em, but don't need to . I've wanted red heels for 60 years!" she'd got slippers in her bag to change in to and her shoes were hidden by a blanket, but SHE knew. so ladies, use your chair proudly and wear nice shoes!

regards, sandra

[Hidden in reply to hamble99b]

How wonderful Sandra and what an inspiration May is! Amazing, bless her!

I've always had a thing about shoes, especially high heels in all colours. Stilettos, I absolutely love them, but I can't wear them any more due to Fibro. Hubby bought me a wonderful pair of platform high heels recently as I'd told him that I would love a pair of nude colour high heels like the Duchess of Cambridge wears. I also said it wouldn't bother me if I couldn't wear them, I'd just look at them! Unbeknown to me, he bought them for me! Now I look at them and adore them and yes I try them on and that works for me! I love them! It makes me feel good!

Good for May! We should all do something like that, she's definitely got the right mentality.

[willowmuse]

Hello, Ive used a crutch to help me get around but only for short distances, like around the home or from the car to at place I have to be, any longer and the pain and heavyness in my legs gets worse and they start to shake, i have recently aquired a wheelchair as I want to start going out without having to cut the day short because i cant walk any further, allthough I have only used it once. I wasnt expecting my condition to get as bad as it has, I recently came out of hospital, after getting confused over my meds, i was lucky to be found the next day ( i live alone) any longer and i would not be writing this now. I spent 15 days in hospital, 7 of them on a ventilator as i had a nasty infection which turned out to be pnemonia, this was a reality check for me, my gp said im the worse case she has seen!!! I have CFS aswell now just recently been told, on top of the osteo-arthritis, I just turned forty this year, and never thought this is how things would turn out for me and i dont know about anyone else but i still cant get my head round it even now after four years of having fibro, dont think i ever will. I try to be positive though even on my bad days.....

Love and Blessings to all

willow

[josie46]

Suprised to hear that the pain could be so bad and on a daily basic to have to use a wheelchair, as i do have severe pain in body and legs and have been dragging left foot but i still walk unaided. Also shocked to hear that you would have to use a wheelchair daily because your pain is so severe, but does this not improve over time and do you not find that using a wheelchair will not help with muscle tone and muscle weakness which will cause you more problems in the future for your health.

I find when i am in severe pain if i walk it helps to loosens the muscles and this helps with the pain as i am walking, i do still have the pain but walking distracts me from the pain.