How many of you, use a wheelchair or ... - Fibromyalgia Acti...

Fibromyalgia Action UK

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How many of you, use a wheelchair or walking aids to get around.

Belle67 profile image
15 Replies

I ask this because my GP has refused to refer me to the NHS Wheelchair centre because he states "FM sufferers should not be using wheelchairs or walking aids as this can only make the symtom worse" I have now been referred by O.T but just wondered how many of us do. I use crutches for walking to my car which is about 10 metres, I use a zimmer in the house and a wheelchair for when i'm out and about.

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Belle67 profile image
Belle67
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15 Replies
FionaP profile image
FionaP

There are many. I am one and have had to stay in my bedroom for 2 years as have been unable to use my home any more. I am moving very soon to an adapted flat that I can use an electric wheelchair with. Doctors like all need to learn that we are not all the same. Our degree of pressure points differ, related issues also differ and so our needs. My calf muscles pulled badly 4 years back and even though I tried so hard, along with osteoarthritis in spine, hips and knees I could not cope. I now have my thigh and stomach muscles pulling all the time. Even when my walking was OK I still needed a stick to help my balance. Tell your doctor that fibro is progressive and sadly that is what you need now. The aids do not make us worse, we need them as we get worse over time. I wish I had been told this so I could have moved under my own strength to a place of my own choosing. Good luck

gizzmo profile image
gizzmo

i have used a wheelchair since last year on occassions where i have to go some distant,normally i use a walking stick as my balance is off and it began to hurt to much if i needed to hold on to somebody.i have just got a mobility scooter which takes the strain off my arms of using stick.as for someone telling you that you shouldn't be using aids ,if you need them to help you and to give you some freedom of leaving your house,then don't allow anyone to stop you,i got most of my items from ebay as waiting on nhs help wouldve taken to long ,not always possible for everyone but friday as and gumtree where also a good place to look.fingers crossed and keep going,im sure you'll get there with a little help x

MichelleF66 profile image
MichelleF66

I use 1 or 2 sticks, 2 crutches or a wheelchair depending on how bad I am in any given day. I try to walk as much as I can but sometimes it is just impossible. Ask a different GP in your practice if there is one. There are still a lot of Health Care Professionals out there who have no idea about Fibro. Failing that speak to your local CAB who might be able to point you in the right direction. Keep going...

Bess profile image
Bess

I suggest you change your doctor , I struggled with a doctor for years who was unsympathetic , when I changed to a doctor who was more informative , I felt so much more supported and not left out on my own all the time, I have a mobility scooter and when I got that it changed my life, I became independent which gave me my life back , just being able to go out in the fresh air again for a 'walk' so helps the state of mind , don't let your doctor spoil your life as mine did for years .

mitzy68 profile image
mitzy68 in reply to Bess

i have had fm for 30 years , i know its hard to believe it but the doctor is right. Even though the pain can be terrible at times . Not moving around and keeping your muscles moving will have a knock on effect as they seize up and become weak. the best way to deal with it is to learn to pase your self. do a little bit then rest a bit . so by not keeping moving you have made things worse for yourself and will rely on aids all the time .

bevhepting profile image
bevhepting

I use a walking stick when my days are bad, however I am lucky at the moment as I can still get around even though the pain can be awful. The problem is some days it is fine and other days I cannot move. My GP did not say anything about assisted aids, I just found I had to use a stick as sometimes the pain would hit so sudden in my legs I would fall over. I say, use what ever makes you feel better able to cope. Change your Doctor if they are unsympathetic and learn to understand your own body.

cherrypie profile image
cherrypie in reply to bevhepting

im the same, some good days and some bad!... i ended up buying a walking stick when i lost the use of one leg entirly and still the hospital would not consider me as needing aids ( as im not registered disabled)...

my partner ended up taking to the disability shop who were superb. i have been seeing the OT over the last six montsh who has issued me with a fisher walking stick to ease the pressure on my arm and wrist... she wasnt ovely impressed with the fact the consultant wasnt referring me sooner for aids. ia gree with you... use what makes life easier. i have pain in leg leg, left hip and also neck and shoulders but i still work full time and commute almost sixty miles a day to and from work. my employer has been ace and has been more helpful than my consultant.

fairycazzie profile image
fairycazzie

Hi there sorry you have fibro.. I have not been diagnosed with it but i have alll teh symptoms, as was worried in beginning was its sister related problem. I am just waiting neurologist at moment.. I have had to get a stick for going out on longer days and to hold me up in ques etc.. I have had MRI's and have compression on nerves which originally was thought to be the disc causing it which is pressing on my spinal cord, but the Neuro surgeon says this has nothing to do with my widespread pain issues and stiffness and weakness, even my left hand keeps having spasms and i have to keep manipulating it, i suffer badly with fatigue and never seem to be able to sleep properly or wake up very tired ..everything that is connected to fibro i can tick the box..but i guess you dont get any diagnosis over night and have to make sure for definate.. i have been pain management and rheumotology and they sent me straight to neuro surgeon but he said if was on one side could of been easier to decide on op but cos its both this will not solve the problem and could 90 cause paralys if i had the surgery..so its alll so very scary for me.. i cannot do my physical job anymore but lucky enough to keep it going and employ to help. mood swings too and the pain at times is so annoying. I take Lyrcia and co-dydromol (originaly had codeine 60mg) but that wont mix for me with lyrcia plus beta blockers and lansoperole for reflux and had trouble swallowing.. how did you get diagnosed and how long before you did.. this is a nightmare at times.. my family are great and i feel sorry for them at times for my moods xxx

Belle67 profile image
Belle67

Thankyou Ladies, At least I know my Doctor is basically talking out his A** and I will be changing.

Fairycazzle I had ME when i was 18 and it lasted nearly 4 years before going into remission. This was back when it was called yuppy flu, luckily I was seen by a leading specialist back then and got the right help.

I was diagnosed with FM back in 2002 after about six months up until 5 months ago I have had to use a stick on bad days but unfortunately the bad days became more than the good days until last September when I became so bad i ended up in hospital and since then i haven't really been able to walk more than 10 metres on a good day.

I changed doctors recently and i have had to battle over medication, getting other help and now this but I am seeing a different lady doctor next Monday so hopefully she will be a little bit more understanding.

Thankyou again ladies xxx

MichelleGoodwin profile image
MichelleGoodwin

I use sticks indoors or a walking frame and an electric wheelchair when i am out. glad i have an understanding gp.

Artyrosie profile image
Artyrosie

I use crutches outdoors, at a physio's suggestion, and now also use a wheeled zimmer frame thingy, a wheelchair occasionally and a scooter. Since I can no longer drive these are all essential.

Brujah81 profile image
Brujah81

Hello, I use NHS crutches with handgrips which i got from the rhemy physio inside and i tend to use a wheelchair outside as i can only walk for about a minute maximum. I did use a zimmerframe thingy but i kept falling over it and i am only 30 years old and i felt like a granny!

louknits profile image
louknits

hi i use one or two crutches daily or wheelchair if my ten year old is up to pushing me in it. would love to get a mobility scooter but being single mum with three boys 10,8,6 it not easy.

suemccoy profile image
suemccoy

I use walking sticks on a reasonable day - this is for my balance, I also have a wheelchair as I cannot walk far because of the pain as I have FM, osteoarthritis,crumbling spine, prolapsed discs and nerve damage

Treewade profile image
Treewade

Walking stick I can’t manage uneven ground without it xxxcc

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