For the last few months (about 6) my pain has been increasing all the time, my back pain is a nightmare. The pains in both sides of my body are worse and can’t seem to find anything to help. When my back is extra bad my husband gives me a light massage, but last time he said my back was so hot he could fry an egg on it-which I didn’t find very funny at the time. My stomach is not good either and my upper body/ribs feels tight a lot of the time. Sleeping is just tossing and turning trying to get comfortable as both sides hurt and can’t lie on my back or stomach. But, what I wanted to ask, as my legs seem worse and more achy as well, should I go for a wheelchair or a mobility scooter or neither? My husband says at least it will enable me to get out and about, but will still be in pain. To me it feels like I would be giving up maybe, and am so fed up of all the pain, and can’t take painkillers from doctor.
Thanks for reading this. SueT.
Good morning Sue! I’m guessing that you’ve had imaging done and an exam, as what you’re describing doesn’t necessarily sound like fibromyaligia. Whether you have or haven’t isn’t critical here. Mobility devices are a tool. Ideally there shouldn’t be any judgement associated with their use. If using a mobility aid, or a variety of them depending on the circumstances, allows you to participate fully in your life, then go for it!
Sharon from ModSupport
Hi Sue, good question.
My (cheeky) answer: No. As in: No, you don’t give up whether you go for a wheelchair, for a mobility scooter, for neither or even for both. As in: You shouldn’t, whatever you…
It’s the extent to which you use them that makes a difference. These aids can take you right up to your limits of various kinds. You would be giving up if you be staying under your limits. But you can speed around for hours in a wheelchair or a mobilty scooter, seeing much more, and you can still walk in between as far as you get, then back to the aid etc., switching.
It’s actual only a mental thing, and it depends on your personality. If you are someone that tends to give up by succumbing, the wheelchair might stop you from walking, because of its image in your head, and because there’s less necessity.
I’m someone that never gives up, never gives in. So using a wheelchair I’d only use in situations where I’ve reached my limit.
But I don’t like the image in my head, so I’ll be looking for alternatives as long as possible.
I’m a cyclist. My cycling has got slower and slower. But I still refuse to get an e-bike. Altho the chance is getting higher and higher. Still delaying it. If one crosses my way, I may take it, and I’m reducing the amount of my push-bikes so I have room for one.
When I go for a walk with my wife I don’t walk myself most of the time, as I don’t manage much, I cycle next to her with my bike - incl. uphill and downhill. But I get a lot of movement quite aside from these walks: Stretches, exercises, staircase (doesn’t matter how long it takes, housework, gardenwork, carrying heavy things for a short time, table tennis, even tho I can no longer pick up any balls and I’m down to 1-2 games at the moment.
All this slow short activity of course is delaying any aids as well.
The last times I tried to walk with my wife we realized she’s much faster nowadays, and needs that to release pent up energy, so she charges ahead. And then mid-walk there comes a point where I need a longer break. And in my first year of fibro there were a few months where this had got even worse, due to the doc treatments and not knowing how to keep my condition up yet (with stretches, exercises etc.). At that time I had to stop walking every 2 minutes. Then I looked for workarounds and it got better. But still I use a cycle as an aid, cos I’m just not fast enough to keep up. Also if I get exhausted in between suddenly, or desperately need to go to the toilet, I can quickly cycle home.
Hi Sue, I have often asked myself if I would be better off using a mobility scotter and others have the said the same. My reply to myself and to others is: ‘no’ I am not ready for it. I think, use my legs or lose the use of them. I also agree with Sharon if it helps you to get out and about then by all means get one. In the end it is only you to decide what is best for you.
When I get out of a taxi I often ask the driver if he has got any WD40 to so that my body will work!
Nice one! 
. In a bus you can’t ask the driver anything, so I started “oiling” = stretching my limbs 2-3 minutes before reaching the destination, so that I could get out and not be whisked on… 
When cycling that’s not possible, so I have to be very careful getting off and need to wait a minutes, despite seemingly having been in movement before. But somehow my legs get stuck in that cycling movement same as they do in postures. And need oiling all the same…
Hi Sharon,
Thank you for your answer of my post. Last year I had blood tests which showed nothing wrong, then a scan across the stomach area, again found nothing. Then an ex ray on my back and right side, which showed I had osteoarthritis in the spine. So, along with the IBS and arthritis in other areas and in my hips as well there’s a lot there to put up with. I did mention the tight feeling in my body last time I saw the doctor-and she said ‘fibro can give you funny feelings’, I don’t find them very funny though. Anyway, managed to make another appointment with my doctor in 3 weeks time, earliest one I could get and see what she says this time.
As to the scooter or a wheelchair, will have to think on that, I am a bit of a ‘ditherer’ on things but will have to save up whichever I go for.
SueT.
Hi Rosebud74,
Thanks for your answer-it did make me smile about the WD40, maybe I should go buy some Lol.
I have been telling my husband I don’t want either a scooter or wheelchair at the moment, I like to walk even if it makes the pain in my back so much worse. I always took long walks back when I was younger-too many years ago now, and never thought I would end up like this.
So, whichever I finally decide on will have to save up for anyway, but think it will gradually come down to one or the other. Or get my husband to carry me but I don’t think that will work 
hope that you are feeling good today.
SueT.
I guess she meant ‘strange’ of course, as in not the kinds of pain we’re used to, not funny ha-ha… More importantly what she’s doing is ‘blaming the fibro’, but it seems she is still checking, which seems a good attitude. If scans don’t show anything up, it’s time to find exercises/stretches that can improve, but also supps: If by “tight feeling” you mean a tension, then it’s the amino acid GABA which relaxes my muscles additionally to and deeper than for instance relaxation exercises of various, might that be something for you?
Any possibility of trying one or both scooter and wheelchair out? Also what about a walker or similar as a compromise, as you’re not even sure you want either?
Hello @SueT! First I want to say I’m so sorry for what you’re going through. One of The most frustrating things about chronic pain-for me- is when there is NO relief even when going to bed; to the place of rest and rejuvenation, and you find nothing but MORE discomfort. Terrible.
That said, I agree with the person who wrote, “mobility aids are tools” to help you achieve more freedom and/or independence; so don’t see at as a sign of “Giving up” but as a choice to carry on best you can. Use whatever you can to have quality of life, girl!
But I also have a question: based on the symptoms you are describing; which sound as though they worsened significantly in the last few months, have you had any bloodwork? Specifically, I’d want a “tick panel” to rule out Lyme, Erlichiosis, Anaplasmosis, and the other tick borne illnesses.
Just this old nurses’ opinion.
I wish you luck and good health… know that you are cared about!! X/O
Hi Sue,
Just here to remind you that using a mobility aid is NOT giving up. It means you are still doing things, getting out and living the best life you can under the circumstances you are in. Hope things improve for you soon!
I’m glad they’re listening to you. I don’t know, but if you can access a back specialist, it may be worthwhile. I see that you’re in Great Britain so I know that can be more challenging
Sharon
Hi JayCS,
Thank you answering my post. I agree that it would be down to the extent of using them which would matter. It’s not so much my legs that are so bad, it’s the back and side pain that makes walking hard. The pain is always there whether I go for a walk or not, but it’s always worse when I do. Where we live now is a place for older people and no one has a wheelchair and have only seen 1 mobility scooter, and a couple of walkers as well. None of them seem to have my problems though.
I haven’t been on a bike now for years, and so much traffic round here wouldn’t want to, although sounds a good idea. I could ride, hubby could walk. He walks faster than I do anyway. Just a short walk and I am tired, I wouldn’t say exhausted, but definitely tired. We went out to a coffee shop the other day, it’s only a 10 minute walk away from where we live, but was in so much extra pain later on I wish I hadn’t bothered going out-but the coffee was good.
Hope that you are doing ok today.
SueT.
Hi Jess111,
Thanks for answering my post, and am trying not to even think about giving up. I am still trying to do some things, even when it increases the pain so much. I don’t go out as much as I would like because of that, the pain later on in the day is not nice and sometimes feel like screaming Lol.
Hope you are having a good day.
SueT.
Hi Sue,
well better not to compare or care, distracts from self-care and sensing into my body what it needs. I do explain to people who need to know when I’ve found that out, and it’s a continuing process, cos my body is changing with treatments, co-morbidities, triggers, not so much age. The first person who needs to know is my wife, who worries too much and believes I don’t tell her the whole pain, but if I do try to tell her, and also that pain’s not that much of a problem, she doesn’t want to hear it all anyway… But she’d also need to know if she didn’t take them seriously. Secondly my mates & acquaintances need to know so they know roughly what they can/-'t expect, esp. since I (we) have so contradictory symptoms: I “look good” (answer: “well, at least that’s OK”), and for a short time can lift heavier weights than others, but socializing or walking is sometimes not possible at all, usually possible for 20 mins., occasionally possible for an hour or more if I take regular breaks.
Back to the older people in your place now: Those who have your problems probably stay at home, or only go out on good days, so kudos for you being the only one of them out there on not so good days, encouraging people to get out!
Well of course when we’re out for a walk, I cycle on the pavement. And if necessary for any reason I can use it as a walker or she can shove it for me - or even both, I spose! 
When alone or cycling together, I keep well away from roads with heavy traffic, cycle slowly on pavements, use side roads etc. If I notice a lorry or something coming, I get off way in time (in case I stumble) and go to the side or keep still, so they can drive around me. Always main focus on keeping all symptoms and dangers in check, but keeping moving all the same.
Yeah, opposite for me: I’m not that tired (as in itchy eyes?) after a short walk, or can ignore it without backlash, ‘only’ exhausted and aching. I can imagine back and side pain getting worse from cycling, depending on what they’re from. My back and other pains do get a little worse from cycling, so it’s always a relief to have managed 30 minutes of that challenge, or 2x20 minutes. But actually sitting in a wheelchair or a scooter longer than 5 minutes would be absolute hell for mine - sitting is the worst I can do, not being able to twist-stretch, rotate/swivel, move etc., I need special types of seat and sit best twist-stretched on the floor in various positions against my couch, and need to do change position every few minutes. To get a mobility seat like that I’d probably have to spend a few millions of euros… 
But to get a bike more comfy is easier and cheaper, I now usually use one I “for fun” call my “disabled bike”, low saddle, no bar. I’ve still got my more sporty bikes for the better days/times.
So all just suggestions to try, we’re all different.
Yeah, interesting day today, tried a pixie dust speck of T4 (thyroid), and it might be improving energy, but I always have to watch all the effects closely to keep everything else in balance.
Hope your day’s got a few successes too - we have to become experts in relishing the good bits, don’t we…
Hi JayCS,
My back just feels tight or tense as you say. I have been doing some stretching exercises for years now and now have to do them lying on my bed as can’t do them on the floor. Maybe I should look into other and maybe a bit more challenging exercises? There seem to be so many ‘out there’ it gets confusing, and my back seems to protest at everything.
Will see what the doctor says when I see her again, not for another 2 weeks though, but not expecting much. Last time it was only to give me painkillers which I couldn’t take as makes my stomach worse.
I may be able to try one or the other of the wheelchair of scooter out, there’s a mobility store in town, have to find out if they do that sort of thing. Not sure about a walker as one I tried a while back I had to keep bending over-not good for my back.
Thanks for your answer.
SueT.
Hi ModSupport,
Thanks for answering my post. Yes, am in GB and health service is so challenging these days it’s nearly impossible to see anyone, unless you go private which we can’t afford. So many people here on strike off and on over last few months and waiting times if you go to A&E are awful. Hope it will improve sooner rather than later.
SueT.
Hi Jess111,
I haven’t decided whether to go with either just yet, but will still keep going about as much as I can.
Thanks,
SueT.
Hi N8trluvr,
Thanks for answering my post. Frustrating is a good word for how I feel these days-no respite from pain all day. It does ease off slightly when lying in bed, but only slightly and then get cramps in my legs if I try to stretch them out too much.
I will carry on as best I can, not much option really, and will no doubt have to consider some means of mobility some time.
Blood tests were done last year, a CBC (complete blood count I think that’s what it was) but didn’t find anything, and neither did the x-ray or scan. Will have to write those ‘tick’ things out and ask when I see doctor in 2 weeks time.
I am so glad I found this site, so many caring and knowledgeable people.
SueT.
Hi Sue if you go for a rollator/walker then you need to get one to adjust to your height. The one I use is adjusted so that I do not bend my back. My arms are just bent at elbow, which is quite a comfortable position. People say to me because I am not bending my back there is nothing wrong - how daft is that. If there is a mobility shop in your town they should sell mobility aids. You can always ask your doctor to give you a referral to an OT who will be able to advise you on the best buy or they might be able to loan you one. They do that here.
Yes, I think looking into other exercises will be worth it. When I started off in my twenties I had 6 physios in the course of a few years, the first 4 were useless, the 5th was gold for showing me how to pinch buttocks together and press wrists down, whilst the 6th was brilliantly built on that by showing about 100 exercises, which I tried to all note and coupled with the right basic technique gave me a great repertoire. I chose 5 that I have to do every single day. With fibro they got worse so I had to add more, got them from a “yoga” back DVD/book, which I still often do for extra measure when bored/waiting. Nowadays I always put a specific pain I can’t get a handle on in youtube and go thru the suggested ones, till I feel it has targeted that place properly. That way also I may find a solution for different types of pain to mine like joints, pinched nerves etc.
When I do my back exercises on the bed, even my hard straw mattress makes it too “easy”, so if I need to challenge my back and rib muscles more I do them on a mat on the floor. Alternatively, but difficult, on the bed something to make it harder could be a compromise…
That’d be same for me, and I’ve come to believe only brilliant docs will know roughly what active (exercises, stretches, self-acupressure massager) or passive (all the various manipulations…) treatments are best, and can’t so I’d trust physio experts more, and to be honest nowadays actually youtube experts together with my own feeling for my body.
True, I wouldn’t go for a “traditional” walker, but an upright one, like here:
Or if that’s unnecessarily expensive or has other disadvantages
- one that can be height adjusted a little more or
- use handyperson tricks to make it higher or
- see if any youtube ideas can help, like here:
