Hi, I was diagnosed with fibromyalgia in 2017 and have been getting worse. I cannot walk round town without being in considerable pain and the pain doesn't ease for quite some time. I have debated getting a wheelchair self funded because I think it would help me to get about without further pain.
I suppose I'm embarrassed as I'm a larger person (I say it's a symptom not a cause as I have issues that can lead to unintentional weight gain) but I worry about judgement.
I know I should ignore others but it's hard.
I also have family members who have been told they should get a wheelchair but they manage without although with difficulty.
I think I'm worried people are going to think I'm being lazy or the pain can't be that bad. But I am in absolute agony and end up crying because of the pain and my legs stop working properly they get so tired. I can't manually propel or don't think I would because my arms get so tired just folding clothes to the point they hang uselessly until the strength returns.
I think I've answered my own question about should I get a chair but I think I just need others to say it's ok. And I know I shouldn't need others to approve it but it's just how I feel.
Thanks
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Tisticenby
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hi, I had to give in, and use a wheelchair, at 1st I just use to keep my head low, but that hurt, now I’m in a powered chair, I have no choice, and I don’t care if people stare any more. I would rather be able to go out with my family for a short period.
have a powered chair that you can take the top off, and it folds down to go into the boot of my husband car .
If you have problems with your back, pad the chair, also the same for upper legs, I still find that the pain of sitting for a long time can hurt too. Good luck.
Hi there and welcome to our group. I am wheel chair user and to be honest I have always found it very hard to have my husband push me about in it. But I have no choice when I have to go to appointments etc. What makes it hard for me is how well I can look when having to sit in the chair.
Like you my legs give way after walking a very short distance . But I do have stenosis in my spine as well as OA not to mention fibro for over 40 years. But it does not help that no one can see the pain so I do understand and empathise with you.
The thing is IMO if you feel you need the use of a chair then you need to do what will help you . You say you could not propel a wheelchair. So my question would be who do have to to help you by pushing your chair ? Are you saying you need it for around the home or just on journeys out doors ?
I think most people have family members who are martyrs to pain and will struggle on even when it may not be necessary for them to do so. But you are not them and they are not you. Like I said Imo you need to do what is right for you .
When we can not get around too well and taking medication it can be very easy to put on weight . I am also a little dumpling LOL But It doesn't stop me trying to drop a few lbs. It's not easy but I think for me it's doable . I think I just need a food buddy .
I don't know your age or if you have a family or live alone But do you have any friends or family that maybe could help you if you got a chair ?
Thank you very much for your welcome and reply. I would use it for outside, my house is small enough that I can navigate without much use of an aid. I am either on my own or with my youngest daughter so she can't help to push me so that was why I was thinking power chair. Thank you I really appreciate it. I'm trying to lose the weight but I have pcos and am hypothyroid so it's been hard but I'm trying.
Hi again, I think a power chair sounds good to me. I would consider it myself but I do suffer from agoraphobia and social phobia so getting out is not always an option for me especially on my own. But if you feel you would be ok with it I would say never mind what others think and go for it. And no need to be alone you can always come here and chat.
We are not all doom and gloom here. We like to have a chat and a laugh about other things than health issues too so please feel welcomed. And if you need any help navigating the forum please just ask
Ditto to Dizzytwo. The same symptoms and time frames. Spinal problems as well.
A frame helps with the length I can walk but getting on the website now for an electric chair. Going through an assessment next week for a higher level of assistance.
I felt embarrassed when I got my frame, but have missed out on holidays for too long. I face the problem of space so this is my problem.
Try to forget about other people as those that mind don't matter and those that matter don't mind. Do what is right for you and what will make your life easier. I was very aware of how I thought people would react to seeing me with my rollator but I haven't really had any comments.
Try a few out, when I went into a particularly well known mobility shop they couldn't have been more helpful letting me try out all sorts of options and spent ages with me and I never once felt I was being a nuisance and taking up too much of their time.
Thank you. I've been using a rollator for longer outings and decorated it so I felt more me using it. I have a stick I'm using for now for shorter journeys. Thank you for your reply, I appreciate it.
I don't go outside apart from Dentist, Doc or Hospital, never alone, I started with an upright walker, You really have to stand upright with it,I was using it out doors at first,More pain made it too hard and painful, Then I got a power chair ,Thinking I could continue to just hold of things (placed for me to hold on to something)
I've not long had the O.T for assessment and my GP put in a ref for me for the wheelchair people as I hardly go downstairs but I also have the pleasure of laying on the floor! (Falls )
We also obtained a mobility van, Where I just go up the ramp and belts down so I can stay in chair when travelling I've done it once, and never doing that EVER again, Sitting up front from now on!
I'm so not a twiggy , Far from it, I worried at the start ,The way I look at it now????
I wear some really funky shoes that I wouldn't have been able to fit in let alone walk in, I have an L plate and some lovely ribbons, After I've taken my meds I don't really care what other people say or do especially kids bless em I say things like ,
Do you need a lift or gifted a ribbon (ONLY WHEN PARENTS AGREE) I can't understand why they put all the facilities the furthest away?? You have to sit up and hold your head up, Just think they are probably wishing they could borrow it because they are tired😊😊😊
Out of the way I'm coming through 👩🏻🦼👩🏻🦼👩🏻🦼👩🏻🦼👩🏻🦼👩🏻🦼👩🏻🦼👩🏻🦼👩🏻🦼👩🏻🦼👩🏻🦼👩🏻🦼👩🏻🦼👩🏻🦼👩🏻🦼👩🏻🦼👩🏻🦼👩🏻🦼👩🏻🦼
Getting a wheelchair if you need one is just practical and proactive.I have one myself for the times I need one and usually need Nordic walking sticks when I am walking because I have a severe risk of going dizzy and falling and as I also have EDS it can cause me to have more injuries.
Getting a wheelchair is something that is positive and empowering.
Feel proud of yourself for seeing what you need and having the confidence to take the action to solve it without letting others opinions restrict what you get to do.
It allows you to do more of the things you want to do and helps you to keep your independence.
You can pace yourself better and take part in some activities to a comfortable level on your feet without having days of pain and Fibro flares from struggling to do more than your body can handle.
My Cardiologist actually suggested it because I also have POTs and Dysautonomia.
I have many friends whom have allowed their embarrassment and unwillingness to show they have mobility challenges in public to either cause them incredible pain as they struggle to keep up appearances in front of friends or family ,or, prevent them from taking part in trips or days out with their loved ones because they don't want to be seen in a chair.
Some are virtually housebound because of their resistance to accept that a chair is just a tool they need and not something that means they are a failure or not the same great person they've always been, just on wheels. .
Get a chair and be proud to use it .
Just simply explain why you use it , it's so you can join in life without so much pain and keep your activity up.
With any luck your relatives whom also need a chair will follow your lead and take back control of their ability to get out and about too.
Believe me when I say , people usually don't notice that you are in a wheelchair or need walking aids of any sort no matter what size you are , how old you are , or if you sometimes walk and use sticks as well as wheel it. You soon forget why you felt self conscious about using mobility aids and wonder why you took so long to get your wheels.
If you need a chair or mobility aids and you are in the UK just ask your GP to refer you to hospital based orthopaedics or occupational health to discuss all the aids you need.
They will provide NHS varieties, which are often basic and manual but do help you to get used to having the aids especially as they will often help teach you to use them safely.
By getting this assistance you can also take longer to decide on the type of chair you might choose to buy for yourself.
Also look into getting free trials with the companies for chairs you might buy to make sure you don't invest in something that isn't comfy for you or easy to use and store or fit in your car.
You can also look into getting a Blue Badge and may be able to get Disability discounts for the apparatus you want to buy.
Thank you very much for your reply, I really appreciate it. I am going to ask for a referral to wheelchair services and see what happens. This is such a lovely group,
Hii would get a wheelchair anything that helps you get about will be a blessing and you won't suffer and sod what people say as long as you are ok nothing matters I'm a big lady too I ride every on mobility scooter I love it it gives me freedom get outside I feel you the legs are the worst pain n it's frustrating cause you can't do things for long go out in your wheelchair and hold your head up up high n ignore what people say give em middle finger lol you take care Hun xx
Have you considered a scooter? I love mine. It also made me swallow my pride to use it originally but now I just get on with it. It enables me to go shopping. It’s amazing how many bags I get get between my feet 😂
Hi, I have one but it's too small I'm 5'8 and this one was second hand and the handle bars touch my knees. But there is not enough room on the foot plate for my size 8's. Plus I can't get it up the steps from my house on my own, so a lightweight power chair would be a little easier. Thank you for your reply I really appreciate it
Sounds like you need a scooter. I use two sticks when I don't have to carry anything. Two sticks are 100 times better than one and they mean that I can get around quickly. My problem is compression fractures; nothing wrong with my arms or legs, but my back hurts if I have to stand for too long and I am bent over, but hoping that this will improve with time. My house is too small to even store a wheelchair or scooter, so I haven't really considered it, but scooters are well worth looking into.
Thank you for your reply. I have a scooter but it's too small I feel cramped. And I have steps to the street so I can't move it on my own. I was thinking a lightweight chair may be more manageable and easier on my hands as they tire and hurt more
Thank you for your reply. I have a scooter but it's too small I feel cramped. And I have steps to the street so I can't move it on my own. I was thinking a lightweight chair may be more manageable and easier on my hands as they tire and hurt more
Ah I understand. even sticks hurt your hands after a while, even the steering wheel on the car. I don't know how light a chair can be or whether you could lift it yourself. I would perhaps visit one of those mobility centres just to see what's on the market, and then try and get it online.
Just adding my voice - I got a wheelchair years ago, firstly because my doctor's surgery moved and is now too far away for me to walk to, but also because once or twice a year it's nice to have a bit of an outing and a wheelchair is the only way that's going to happen. I don't go out beyond that, but without it I couldn't make hospital or doctor's appointments, and it also means that I am guaranteed a seat, and can save my energy for the talking I have to do while there.
I'm also going to get a powered wheelchair and a scooter when we move in a couple of months - no room to store them where I am now.
I know it's hard in the face of judgment but you have to think about what's right for you - it's your life and you only get the one. Make any adjustments you can to improve the quality and if other people want to be martyrs to the pain, well maybe that brings them some weird enjoyment, who knows? But also like someone else said, maybe they'll follow your lead, especially if you talk about how much better it is now you can use the wheelchair when you need to.
When I use my wheelchair I don't feel any judgement and people are really kind. Family and friends have accepted it - I'm fine around the house so it would be easy for them to wonder why I need it to go out, but if anyone does question it or make comments, just explain to them how it is for you and that you don't want to live like that any more when there is a way to make things better. Sorry I went on more than I meant to.
Thank you very much I really appreciate it. My husband is very supportive and he sees the pain I'm in and supports my decision, you're right I have to do right by me. No one else knows what my pain is like but me.
If you live in a hilly area you may have problems with a manual chair, I have one which lurks with intent in the garage, so probably a power chair or a scooter which is sized for you would probably be best. Off the shelf isn't the best way to go about this, as these things can be expensive.
I totally understand what you are going through, I myself am debating whether to get a wheelchair Like you I was diagnosed with fibromyalgia many years ago I also have other health issues osteoarthritis, ostoperosis etc. My lower back pain became worse after having 30 sessions of Radiotherapy after having Cervical cancer few years ago. I'm a bit on the heavy side to, I think you should definitely buy a wheelchair even if you only get and about once a week at the start, I haven't left my flat for about 3 years only for medical appointments. Don't feel embarrassed try to enjoy xx
Hi,I have the same issue.I do have a self propel wheel chair I can use if we go out and I can be pushed as I cannot self propel.I have bought myself a mayfair mobility scooter 2nd hand as they are very sturdy
Thank you, only issue is I have some steps leading up onto the road so wouldn't be able to lift a scooter up them alone But a lightweight chair might be doable
You won't need the chair *if* you sort out your diet.
Losing weight is simple but not easy if you're addicted to sugary fake foods/bread/carbohydrates, etc.
You can say goodbye to pcos, hypothyroidism and fibro if you just eat nothing but meat and fat, and drink nothing but water. Give it just 60 days. Get your husband to join you.
You either have a big question mark floating above your head right now or you were rolling your eyes. 🙂 Give it a try. 👍
That really isn't true and is not really showing a good understanding of the medical conditions being talked about.I need a wheelchair and sticks because of my health conditions and to help increase what I can do.
Yet, I'm 5ft 8 and I alternate between 8 stone12 and 9stone5.
I've always struggled to put weight on all of my life because , as I've finally discovered, I also have Functional Vitamin B12 and Folate Deficiencies and Pancreatic Enzyme Insufficiency.
I have always had a very good diet and have learned to adjust my diet and exercise to help improve my ability to improve and cope with my conditions, but losing weight is NOT a miracle cure to Chronic Pain conditions and the reduced mobility they cause nor will it cause a 100% reversal of chronic illnesses that can affect your digestion or metabolism.
May I point out that I have to eat a diet which contains both animal proteins and plant based foods to help manage my illnesses, I'm in neither the Plant Free nor Plant based camps and have no diet agendas except for supporting people find what works for their individual medical and lifestyle needs.
I've had to do all of my own Self Care research over the years because there was, and us still, so little easily available information on diet and exercise plans to help most chronic conditions.
But one thing I learnt early on is that there are no quick or permanent fixes , no matter which new Diet Fad or Eating Trend experts would try to imply in their stigmatize and persuasive comments to jump on board of the next big thing.
Carnivore, Paleo and the extreme varieties of Keto and High fat/ Low Carb diets are also not suitable diets for life for either managing your weight or finding a suitable "Diet for Life" with the right amount of nutritional vitamins and minerals to help alleviate ( but Not Cure) the problems of most chronic conditions.
People with Fibromyalgia and Thyroid or Metabolic Deficiency illnesses need even higher levels of diet based vitamins and minerals than a generally healthy person in the population does too, this is not provided adequately by a diet that overly restricts consumption of varied healthy foods , fruits and vegetables.
And even when you get your diet organised in the way that suits your individual needs or have a perfect BMI it doesn't prevent your health conditions from having an impact on daily life, mobility and coordination.
The "if you just...." mentality and judgemental comments from people whom don't struggle with illnesses, or don't understand how chronic illnesses can't be easily controlled by lifestyle or weight management changes alone, is one of the hardest things people with illnesses have to cope with Mentally on a daily basis.
People , including close friends and family, making judgement calls on why you are ill just by looking at you or hearing about your weight whether it's under or over the norm based on a lack of knowledge. Blaming and Shaming you for causing your own illness because the belief that all sickness comes from lifestyle rather than the two most essential factors of Genetics and Stress.
More often than not it becomes a different story if those same people unfortunately develop a long term illness themselves.
Such comments cause huge negative stress for people whom are already trying to cope with and prevent their health needs impacting on themselves and others. These comments and attitudes are at the least annoying and frustrating , at worst , cause unnecessary and undeserved Depression , Guilt and Stigma which adds to the burden of those with long term health problems with no easy solutions.
It's bad enough to hear such comments from people without illnesses in the everyday world , we certainly shouldn't expect to experience it from people whom have these illnesses too or contribute to health forums and should understand the issues better.
I've looked at your Bio and replies on various forums , I do wonder have you actually got experience of living with any of the illnesses that you judgmentally make sweeping and extremely negative and destructive comments about or have you just got an dietary agenda to promote.
If you have health issues , perhaps you could include this on your Bio. If not, perhaps you could learn more about the conditions and needs of the people with them before continuing to add such uncaring and ill considered , prejudiced replies.
None of this is really helpful or considering the OP's situation. I can see that you are responding across multiple conditions with "diet" whether it is relevant or not. Diet is important to a lot of conditions. but it is not the answer to all. It is certainly not a solution to fibro and research has not been able to prove it is significant of helping. But it is something that people can control and a healthy diet is healthier......
Very, very negative are you, and downright mean. Where did you get your degree? You are exactly the type that knows all and does nothing. I think you need to giddy up to the wild blue yonder!
I got a wheelchair and initially felt embarrassed to be pushed around in it, as I can walk quite comfortably for 10 minutes or so, so I thought people may view me as a fraud. I don't use it that often, but I've realized it can really make days out more enjoyable and pain free. I'm fortunate that my hubby is happy to push me, but we've had some lovely trips to places like the zoo, museums, shops and parks, that would have otherwise been brief and painful, so go for it! Xx
The choice is yours not other people’s. Have you been back to your doctor. I use a wheelchair if needed and an electric buggy and walker and if others look down on me it;s their problem not mine. Fibro can be a debilitating illness. Talk to your doctor please.
😪Firstly, welcome. This is such a brilliant place to get the advice and support you need.Like you, I'm a large lady and I use a wheelchair. Not because of my weight, but because of various other medical issues. When I first decided to use a wheelchair my daughter refused to push me when out in public. I can't use a self propelling chair due to my OA. After a 'gentle' chat about how reclusive I'd be if I couldn't go out, she understood my feelings. I don't care what other people think....they have no right to be judgemental....we're all humans, no-one is perfect.
Like you, my pain is chronic and unrelenting....I'm unable to walk unaided and some days I could easily just stay in bed and cry with the pain. But I'm not ready to give up yet....my once a week trip out into the beautiful fresh air is too precious.
So go for it....embrace what independence you can still have....grab life by the horns!!!! 🥰🥰
Hi Tisticenby, you sound like a lovely person. I'm about to take the pain by the horns and start on the exercise bike for 10-15 minutes a day. We can't give up. Don't worry about what other people think, this is just a human weakness and they may be staring because you have a lovely face or in case they could assist you. We can't read minds. All the best with your endeavours. You can be a legend!
So I called my local wheelchair services and as I don't need one indoors I don't meet the criteria. So I'm going to get my own because I think it would help. I really appreciate everyone's responses and taking the time to reply to me. As others have said it's my life and no one else knows what my pain is like and it's honestly affecting me mentally. I'm also Autistic so the constant pain of fibromyalgia plus the the extra pain after walking is really having an affect. Thanks again everyone
So I called my local wheelchair services and as I don't need one indoors I don't meet the criteria. So I'm going to get my own because I think it would help. I really appreciate everyone's responses and taking the time to reply to me. As others have said it's my life and no one else knows what my pain is like and it's honestly affecting me mentally. I'm also Autistic so the constant pain of fibromyalgia plus the the extra pain after walking is really having an affect. Thanks again everyone
Thank you for being brave and sharing your concerns and feelings about this horrible illness. I had the same situation as you and Decided I needed options to improve my mobility. I got in touch with the red Cross society who sell 2nd hand wheelchairs they also help you to pick the right chair for your weight. I wasn't aware that wheelchairs have all different weight sizes. At that time I was a bigger lady and worried about others until I realised that this was about me and my quality of life .
After using my wheelchair which is hard work on the arms i felt I need to consider other options like a Disabled scooter which is much easier to use.
Find your local Disability shop and take a look at all your options. This will help you to clarify your requirements.
I brought myself a sit down bike and build strength in my legs and now walking with two sticks I have osteoarthritis in both knees and fibromyalgia and therefore understand your pain levels.
I lost weight by using my bike and that too gave me focus on keep moving.
My mobility will never be the same but I an happy with my achievements. Ask your GP to help you with putting you forward with the pain clinic they are fantastic and healthy minds team can also support you to have more confidence in your self and your mindset.
Don't be worried about others that have Negatives views. You are a brave person and don't let fibromyalgia make you in to a person you don't Recognize.
You are only human ♥️ and its your life so do the best for you and not others. Research what could help your muscles and mobility and your pain levels. Chair exercises are very good for you and using a tens machine will help pain.
Ask your GP to review your drugs as they could be creating more problems than you know.
It's all very normal for these sort of feelings creating in when you are struggling. Don't struggle , be proud of yourself because you are worth it. I do hope you will take some of the advise and change your mindsets and lifestyle to benefit the best results for you. Big hugs 🫂 🤗 xxx
I totally get it, I debated this for at least a year or more.I think for me it was because I can walk it felt wrong to be in a wheelchair and I felt embarrassed as a could push through.
In the end my daughter said to me '"what's the point, why struggle through when you can balance the days out and enjoy all of them by sitting in a chair for a while"
I guess it felt wrong and like I had to justify to strangers why I could get out and walk sometimes.
My girls make me laugh about it now as they get the 'sympathy' smile as they are pushing mum in a wheelchair..."oh that was definately a sympathy one mum 🤣"
I guess what I'm trying to say to you is, it is definitely the right decision for me now and I would go back now I've had it for about 4/5 months.
Live as much life as you can, in any way you can. Xx
Thank you very much. I think that's my dilemma, I gaslight (if that's the word) myself telling myself it's not that bad or that today was a 'good' day but in reality it was just a day where I wasn't crying in pain. So I think I will get the chair, I've seen one online and I'm going to visit some showrooms for other ideas. The 'that was definitely a sympathy smile ' made me laugh but also I understand that people see the chair not the person. Thanks for taking the time to reply.
Yes very true they do see the chair, all of us have a chuckle.Should have also said, I've named my chair George now... just so I trick myself into not calling it a wheelchair 😅
A padded seat is a good thing to try out too, if you're looking x
I am 5ft4ins, weigh41kg-underweight and I can’t self propel in a wheelchair either.
I too have leg pain. and tingling burning etc. 30 years of fibro.-walking is hell.
Recently I discovered that knee length , lowest strength surgical socks help the pain component in legs (though not the other sensations ) though I struggled to get them on. Getting them off was worse.
Now I’ve found some on internet with zips in them that I found I could use these more easily. Better with zips.
Some have extra fabric behind the zip to help avoid discomfort from the zip, but more money. OR I put a tissue on my leg to disguise the slight discomfort from the zip. I know this might not help people more sensitive to touch. Hope this works for some of you..
My take is about you feeling judged. I think, if it was you and you saw someone else in your position really struggling, feeling their life was so difficult, you - like all these people here - would sympathise. You’d be kind by instinct.
I don’t know anyone who found out I had been struggling so badly who wasn’t deeply kind to me (I had to leave work). In my head, I had built it up to the point I thought everyone was judging me. Of course they weren’t, it was a symptom of my struggling mentally with the awful pain.
So do look into your solution. It is exactly what they are for, to help people like us.
And do you know, if someone did judge you, you and all these people on here wouldn’t do that. So look to the people that build you up. And try to be one of those people for yourself.
Thank you very much, you've summed it up perfectly and I really appreciate your kind words. I've seen a chair I like and it's foldable, has good mileage (15 miles on a full charge) and is supposed to be good for inside and outside. So I'm going for it. I'll keepy head up and just think about all the lovely people on here that have been so kind and also my family and friends who understand.
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to wheelchair or to not wheelchair
Fibro constant pain
How many of you, use a wheelchair or walking aids to get around.
My walking is getting more and more painful and difficult, does anyone use a wheelchair and did you feel embarrassed at first.
