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Views on using mobility aids for fibromyalgia and or CFS ir other chronic pain conditions

marmalademarmalade Member Posts: 69 Pioneering
Hi everyone
Just wondered what your thoughts and views are on this.  It seems a contested area.  Some people are of the view that they would never use aids such as crutches or a wheelchair as they feel it is given in to the conditions.  Also being visibly viewed as disabled and have people look and treat you differently because of your disability can be difficult for some to manage.

There is also an arguement for using these aids because they allow you to have the freedom and independence that fibromyalgia  CFS, or other chronic pain conditions can take from you. It also allows you to conserve energy and reduce pain so that your able to do other things and get some quality back into your life. 

Would be interested in your views on this either for you personally or how you would view others in this position.

Replies

  • marmalademarmalade Member Posts: 69 Pioneering
    hi @CazBee

    that's a very healthy attitude.
  • Pippa_ScopePippa_Scope Member Posts: 5,856 Disability Gamechanger
    Interesting discussion, @marmalade! In a completely personal capacity, I was very insecure about becoming a powerchair user but after getting mine in June, it's completely changed my way of life and given me so much of my independence back!  It's all about doing what's right for you :)
  • marmalademarmalade Member Posts: 69 Pioneering
    @Pippa_Scope
    Yes thats how i feel about mine.  I now have the energy to do other things that are more pleasurable rather than being exhausted and in pain doing essential stuff.  I know for some its difficult to take that step but for me it was the rigjt thing, esoecially a power chair as i now have complete independence.  Or at least i will have as soon as i get a hoist sorted for my car. 

    Where you initially self conscious when you startes using yours.  I still dont like the stares i get but they do noy bother me to the point that i would not use my chair. 
  • ncpsncps Member Posts: 30 Courageous
    I used to have having to use my walking frame but my partner said to me, I don't understand, if it means you can do more with less pain what's the problem? This was said out of pure love, and confusion. I vary day by day so although I'm in pain everyday I sometimes use nothing, other times I use a stick, walking frame or wheelchair.

    Don't let what others think Rob you of a better quality of life, no one would choose to live like this, you have ever right to use aids as you need them.😀

    Lou

    Northants chronic pain support

    www.ncpsuk.com


  • sunflowersunflower Member Posts: 33 Courageous
    This is my dilemma right now. I have chronic migraine and ME, have had to give up my teaching career and rarely leave the house. On the days I dont have so much head pain, I can move around the house, just get tired. On good days, I meet friends at a local coffee shop. This is the extent of my life, a once fortnightly coffee trip. I just get tired after a trip out. Do I get a stick for these trips out to stop me getting so tired? I'm just not sure I'm bad enough to use a stick? I wouldn't have the strength to put a scooter in the car. Driving the 5 mins to have coffee is enough of a strain.
    Please offer your thoughts, I'm going round in circles.
  • DavidJohn1984DavidJohn1984 Member Posts: 99 Courageous
    I am definitely one of those people who have refused such aids.

    I hate people knowing I have multiple conditions that disable me.

    Both my Mom Sister have to use walking crutches so this makes me even more conscious of accepting an aid and using it.

    I hate having to be stretchered or wheeled into the ambulance when i’ve had an attack.

    I probably get two days a month when I have the strength to leave the house but after 5 minutes i’m At the verge of passing out.

    so I choose to stay in now till I hopefully get to a point where I can manage my conditions.
  • marmalademarmalade Member Posts: 69 Pioneering
    Hi @sunflower
    I understand your dilemma.  I think it is very difficult for people who have previously been very active and very driven to accept the need for aids.  that said I also think there is a clear argument for them.  If you have fatigue then a stick I feel an add to the woes.  I have M.E and fibromyalgia and found the stick and crutches very painful and tiring to use.  I invested in a pair of smart crutches that allow you to use your forearms and also allows you to lean on them a bit more.  depending on how I am feeling I can use just one and its enough.  There are times however I use a power chair, which again I purchased myself.  I can only use this when someone is with me to help get it in and out of the car.  I am currently looking into a hoist for the back of my car so that I can be fully independent.  They do work and make things less tiring which allows me to do other things.  It's about the quality of life.

    I hope you can figure out what works for you.  if you cannot get out of the house much and struggle to drive a short distance for a coffee then I would say that is enough for you to consider your options.  One of the things I did before deciding on a powerchair was to borrow one from shopmobility to see if it was really worth it for me and it absolutely was.  so that is something to consider.  If it conserves energy and allows to have the energy for other things in your life then it has to be worth considering.  Good luck
  • [Deleted User][Deleted User] Posts: 0 Listener
    I'm 44, I've had health problems since I was a young un which has gotten worse over time. I use aids, I have a stick, not only does it help me with walking (when I do actually go out) it helps me with my balance to a degree. 

    I also have a shower chair. Using aids doesn't bother me at all because I know they are helping me at the end of the day :)

    People have to do what's right for them and their own situation.
  • sunflowersunflower Member Posts: 33 Courageous
    Thanks for the replies. Part of my problem is that because on my good days, I can walk, I feel why do I need an aid. It's an internal battle with myself, where I have a voice saying aids are for people who can't walk. 

    But I know, I can't walk far without getting the shakes.

    I get PIP, and filling in the form was a shock to me as it highlighted how debilitated my conditions make me.

    I am a single parent and one of my children is going through assessments for asd. 

    When I have mentioned getting an aid, my 12 and 14 year olds expressed horror at the thought. I know that's just young teenagers, but it adds to my thought that I shouldn't get one.

    In my 'previous life' I was strong, self confident and a teacher. Now I can hardly hold it all together.
  • marmalademarmalade Member Posts: 69 Pioneering
    I hear you @sunflower but clearly you need something to support you.  I certainly wouldn't be put off because of your children.  My daughter was 13 when I first needed a wheelchair she had no issues with it at all but even if she did she would have to deal with it.  Once they see that it is actually helping you  and gives you more quality in your life which ultimately benefits them then they will be fun I am sure.  However this is your life and you need to do whats right for you.  

    Its okay to only need them periodically.  It doesn't mean you don't need them you just don't need them today but maybe you will need them tomorrow and that's okay too.  But they are there when you need them.
  • sunflowersunflower Member Posts: 33 Courageous
    Everything everyone has said makes perfect sense. Coming to terms with being chronically ill, after previously being well and active, takes a lot of getting used to. 
    I know I havent come to terms with being medically retired from teaching, and I guess mobility aids are a very visual sign that I'm poorly. 

    It's my own issues I need to deal with, but I think if I can get more confidence getting out on my good days, I'll feel better.

    I already have a device for holding my hair dryer, and handles for the bath. 

    So marmalade, you found smart crutches useful? Can I ask why you didn't find a stick useful? If it's too personal, no worries. I'm just information gathering.
    X
  • marmalademarmalade Member Posts: 69 Pioneering
    Hi @sunflower
    Not at all, ask anything you want.  I hear you it takes a long time to accept your situation.  Yes i found a stick and normal crutches very painful to use.  My fibromyalgia causes pain in my hands, fingers and wrists and a stick or crutches just excarcerbated the pain.  However if you do not have that issue then you may well find them useful.  My sister in law has a condition that causes fatigue and she finds a stick very helpful and they come in so many designs now, they can actually look good.  The smart crutch allows me to use my forearms with minimum grip on my hands and are very strong and stable allowing me to lean on them as much as i need to support me.  They are a bit expensive but i have found them worth every penny.  Just google smart crutch and have a look.  

    Please ask anything you want .
  • Tilly57Tilly57 Member Posts: 8 Connected
    edited January 2019
    Hi, this is something I am wrestling with at the moment.  I would love to get to a point where I felt comfortable using an aid, and when I do I can't really handle the looks and the questions because I look "able-bodied" but I have awful ME and the doctors are now exploring whether I also have fibromyalgia because of the constant pain.  I recently attended an event and I contacted them months in advance to find out about the venue and if they had lifts (I really, really struggle with walking up and down stairs).  I was told that they did and if I needed to use the lift I should let someone know.  When I got to the venue, what they had was a stair lift and I felt too embarrassed to use it :-(  I therefore used the stairs, and because the toilets were on a lower level - I repeatedly used the stairs and ended up being in a lot of pain that day, followed by three days in bed, relapsed and am still recovering. I am beating myself up a little bit because if I just used the stair lift, I would not have had such a bad crash/bust.  After three years, I'm still not used to the fact that I have this condition and like someone mentioned previously, I have this internal battle because I can walk and feel like certain aids and equipment are for people who can't walk.  This is actually getting me quite emotional. 

    It actually took me awhile to get used to my shower aids.  I cried a lot when occupational health redid my bathroom so it could be more accessible for me. It was like a constant reminder of my disability and I tried to cover all the aids so people wouldn't see it when they came to my home. Now I love it so maybe over time I will get to a point where I can use other aids, and feel okay about it.  Reading this thread has actually helped but it is really hard.
  • marmalademarmalade Member Posts: 69 Pioneering
    Hi @Tilly57
    I totally understand your dillema it can take a while to adjust emotionally and mentally to the fact the we have a disability.  I used to be uncomfortable with the stares but now I do not give it a second thought.  This is my life and I am going to live it and keep myself as well as i can and I do not need the validation of others.  But I have been ill since 1995 and it took a long time to get there.
    My physiotherapist told me that I should use at least one if my crutches all the time because people need to see something physical to inderstand that you have a disability.  If they see you one day withoutband then another day with it they cannot understand it or appreciate how difficult it is for you.  A constant reminder allows them to register that you are actually unwell.  So I tried it and guess, what she was right.  Even friends and family respond to the cue.  So it's something to think about. 
    I hope you find the balance that suits you.  Can I ask what you had done to your bathroom please.
  • Tilly57Tilly57 Member Posts: 8 Connected
    Hi @marmalade - thank you for responding to me.  I decided to start wearing a badge a few weeks ago, in the hopes that people would just note that something is up - it says "Please offer me a seat". I got it from tfl as I would feel bad sitting in the priority seating area but now I feel my badge gives me some justification. I loved what you said..."This is my life and I am going to live it and keep myself as well as i can and I do not need the validation of others". I really need to adapt my mentality and have that approach.

    They put in a shower, handle rail and shower chair board thing. Sorry I don't know the technical name but it allows me to sit and have a shower.  It has helped A LOT


  • marmalademarmalade Member Posts: 69 Pioneering
    Hi @Tilly57
    That badge sounds like a great idea and it is a start to acknowledging your disability.  Good for you.  I might try and get my hands on one of those myself.  I  received a chair hoist for my bath.  I also received a perching stool that allows me to sit whilst in the kitchen preparing food and it makes such a difference.  I purchased  smart crutches and they help massively as normal crutches can be painful, especially with fibromyalgia which sounds like you have too.  

    You can buy car stiggers too that highlight your disability which is handy if you use disabled parking bays but no visual aids.

    I put two stickers on my wheelchair.  One says disability does not mean inability and the other says my legs don't work but my mind is fine.  Sometimes people need reminding 😉
  • Tilly57Tilly57 Member Posts: 8 Connected
    Hi @marmalade, thank you. I can't use crutches due to a shoulder injury plus I get crazy pains in my arms but I love the sticker idea. Where did you get them from? I always say to myself disability does not mean inability so would love some stickers to put around my office. 
  • marmalademarmalade Member Posts: 69 Pioneering
    Hi @Tilly57
    The crutches prevent all of that as you use your forearm but i hear what your saying it can be difficult.  The badges can be found on eBay and Amazon.  I got mine from eBay they were pretty cheap too.  I think the fibromyalgia one was amazon though. 
  • ncpsncps Member Posts: 30 Courageous
    I thought I would post this link for those of you who need but cant afford equipment :)  https://disabilityequipmentservice.co.uk/

    Lou

    Northants chronic pain support

    www.ncpsuk.com


  • jeanypee3jeanypee3 Member Posts: 5 Listener
    I have constant pain and fatigue from my Fibromyalgia and arthritis so I don’t go out much now.
    when I do go out I use a stick , if it’s just from the car to a nearby place where I’m sitting for a meal etc. This is also to let people know that I’m struggling and then they are more understanding.when I go shopping, about once a fortnight now, I use a mobility scooter. The scooter has been amazing as I couldn’t go shopping otherwise .
    i don’t notice people staring anymore as I know that I need the aids even though I can walk, my legs work fine , I can walk around my house and garden , I just can’t walk far enough to go out anywhere without aids . 
    I too was a teacher in my old life, 
    ive joined this site today to make new contacts .
    Jean 

  • marmalademarmalade Member Posts: 69 Pioneering
    Hi @jeanypee3
    I am exactly the same as you but use a power chair as opposed to a scooter.  It allows me to have some semblance of a life.  This is a great site I am sure you will enjoy it 
  • sunflowersunflower Member Posts: 33 Courageous
    Hi @jeanypee3
    This site is great. People just 'get it' without you having to go into lengthy descriptions.
    I am similar, M.E. with lots of pain, plus chronic migraine. Makes going out tricky. 
    I am ok having hand grabs in my shower and bath, because no one sees it and I can tell it makes such a difference.
    I have a course with the ME/cfs service here. First of a 2 part session. Dont hold out much hope as I know the service is v underfunded, but hoping there may be some OT input. I dont know whats really available for people like me. 
  • marmalademarmalade Member Posts: 69 Pioneering
    Hi @Waylay
    Thank you.  It's a shame most of us have to deal with that.  I guess it's part of coming to terms with being less able than previously.  I know in my head I can still do things and still want to do things but my body betrays me.  It's difficult. 
  • marmalademarmalade Member Posts: 69 Pioneering
    Hi @sunflower
    Not sure where you are based but certainly in Scotland I can ask for a referral to IT and physiotherapy.  The NHS has a rehabilitation service.  Ask your GP if you can be referred.  My OT supplied me with kitchen aids, bath aids and a perching stool.  They could be really helpful for you.
  • sunflowersunflower Member Posts: 33 Courageous
    @marmalade I am based in the Midlands. I will go and ask for a referral to OT.
    Thank you!
  • marmalademarmalade Member Posts: 69 Pioneering
    @sunflower yeah its worth checking out.  Good luck let me know how you go.
  • DavidJohn1984DavidJohn1984 Member Posts: 99 Courageous
    @sunflower

    I’m in the Midlands, you can ask for an OT to come out and assess you without going through the Doctors.

    I went through the councils adaption team and they got a lovely young lady to come out and assess me.

    hope this helps.
  • sunflowersunflower Member Posts: 33 Courageous
    @DavidJohn1984 that's really good to know, thank you, I'll look them up
  • Tilly57Tilly57 Member Posts: 8 Connected
    @sunflower

    I’m in the Midlands, you can ask for an OT to come out and assess you without going through the Doctors.

    I went through the councils adaption team and they got a lovely young lady to come out and assess me.

    hope this helps.
    That's what I did too👍👍
  • ncpsncps Member Posts: 30 Courageous
    have you guys looked into support groups in your area? I run them all over Northamptonshire for people with chronic pain and they make a massive difference to your life. just the fact you can speak in person to someone else who ha similar struggles helps.. I cant put into words how powerful this is. Any of you are welcome at my meetings but as I say they are only in Northants but you may have some locally?.. Oh just one thing to watch out for though, I always keep my meetings informative and positive :)

    Lou

    Northants chronic pain support

    www.ncpsuk.com


  • marmalademarmalade Member Posts: 69 Pioneering
    @ncps
    Thanks for that.  I have tried these in the past.  I found them to be too focused on the condition and what I can't do rather than on the positive.  I like that you seem to be aware of that and make the effort so that it is not like that.  Unfortunately I am not near you.
  • ncpsncps Member Posts: 30 Courageous
    @marmalade That is exactly what we don't need!!  We all know we are in pain but by concentrating on the positive it helps

    Lou

    Northants chronic pain support

    www.ncpsuk.com


  • debbiedo49debbiedo49 Member Posts: 2,906 Disability Gamechanger
    I have fibromyalgia and I suffer from fatigue after going to work which lasts in total house to house 2 hours. Mostly I am sitting or getting up and down. I was getting used to managing the time but struggling to get home and just collapsing every day. To me this issue was made manageable by the placement of public outdoor seating on the walkways to and from my job. I could pace myself and rest on the seats if I needed to. However before the summer the council removed all of the seats on this route apparently due to “vandalism.” In my opinion the seats were find to use. So I waited for replacements over the summer and the council did not replace them. In one part , the park, the put a couple of wooden picnic benches. This covers very little of the area and they are in the grass so if it’s muddy i can’t use them anyway. It goes no way to provide rest stops for me. So I contacted the council to make a complaint and I advised them that people like myself with a disability need those seats, as well as others like the elderly, families etc. I asked were they going to replace the seating? I got a reply eventually from someone stating that they would take a look. That was a few weeks ago.  
    I have never been advised about any aids for fibromyalgia and I think it’s a case of you don’t ask you don’t get. There are lots of things I can’t do at home because of my hands and wrists but I ask my son to help me. There have been times when I’ve had minor accidents due to fibromyalgia and weaknesses and I’ve been worried about what happens in the future and what should I be doing to help myself. Like recently I fell down stairs at work and in hindsight I should have been using the lift. But I just tell myself it will be okay. It takes something to happen for me to stop and think what should I have done? 
    There have been times where I would have appreciated a walking aid like a stick but I just push on and try to manage. I was trying to explain this to my therapist about how restricting my life has become because of fibromyalgia and my mental health issues ( which to me are related) but she didn’t really get it. 
    Also, does anyone use aids for fibro fog and memory issues? Like taking meds, remembering appointments and important stuff, etc? I rely on apps on my phone for that kind of stuff but still miss a lot. 
    Great topic! 
    Thanks x
    💜🏴󠁧󠁢󠁳󠁣󠁴󠁿
    I am a fibro warrior !💜♏️
  • marmalademarmalade Member Posts: 69 Pioneering
    Hi @debbiedo49 I totally relate to trying to find ways of managing your condition.  In terms of physical aids I use special forearm crutches as normal elbow crutches are not suitable as they create more pain.  I also use a power chair when I am particularly fatigued or in pain.  I have CFS  too.  But for me the chair allows me to conserve my energy and ease the pain and allows me to do more in a day than I otherwise would be able to achieve.  I use phone apps for medication and appointments.  I pay all my bills by direct debit so I don't forget any.  I also use other aids for communication such as dragon which allows me to speak to my computer and it will type for me.  I then use read and write gold to help with reading my material back to me and checking grammar etc.  I use the echo pen to record meetings and lectures too as I struggle to retain information from my lectures.  Hope that helps. Do you have to walk a lot to get to work?
  • Chloe_ScopeChloe_Scope Administrator Posts: 10,666 Scope community team
    Thank you both for sharing your experiences. :)

    Aids can be a great way to support yourself. For medication I also use apps @debbiedo49, I also have dosette boxes which I've found really helpful.  
    Community Partner
    Scope

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  • debbiedo49debbiedo49 Member Posts: 2,906 Disability Gamechanger
    Thanks @Chloe_Scope I may get a box as I was looking at them online and saw them with push release buttons as I struggle with fiddly openers. Thanks @marmalade it sounds like you have done a lot of research! I will be looking those items up for reference. My managing my walk to work was originally part of a planned return to employment after several years fighting chronic pain, fibro and m h issues including agoraphobia. Being able to time and be in control of walking to and from work approx 15 minutes to 30 mins each way is manageable for me most of the time 5 days per week as long as the conditions don't change. Like the fibro and the planned route and the rest stops. Things like the pathways as its green space being flooded regularly due to weather can really throw me off and I would rather get wet feet than try walking in wet grass lol. I'm currently looking at wellies which I never thought I would wear again. It's not just me. Meeting others on my walk and chatting I've realised that people need decent safe pathways and seating to rest on. To go to the effort of waiting on a bus and relying on someone else to accompany me which is also the long way around just isn't practical. Also I practice mindfulness on my walks and enjoy taking the odd photo on my 📱 
    💜🏴󠁧󠁢󠁳󠁣󠁴󠁿
    I am a fibro warrior !💜♏️
  • marmalademarmalade Member Posts: 69 Pioneering
    I understand the mindfulness aspect.  I live in the country side and it really matters as I think this condition can really affect your mental health if not kept balanced.  I really hope you get the issue of seating resolved and in the meantime when you get your wellies....jump in a few puddles 😁
  • Chloe_ScopeChloe_Scope Administrator Posts: 10,666 Scope community team
    That sounds really peaceful if the weather is right @debbiedo49! I nearly bought wellies when we had flooding in my town, not that I can walk in them very well.  :D
    I hope your walks keep bringing you comfort and there are plenty of places to rest. :)
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  • debbiedo49debbiedo49 Member Posts: 2,906 Disability Gamechanger
     :) 

    💜🏴󠁧󠁢󠁳󠁣󠁴󠁿
    I am a fibro warrior !💜♏️
  • LaughingLollyLaughingLolly Member Posts: 101 Pioneering
    I have had some of !y symptoms since teenage and various diagnosis since early twenties. I'm now approaching my 50's and I got a Power chair 3 years ago when I realised life was slipping me by. My then teenage children expressed that they wished I had got a chair much earlier as they felt me not using a chair had ruined their lives! I am a full time carer for the oldest one and he sees me as much 'betrer ' with the chair. When I first got it he saw it as me having got better. He has learning delay and is autistic so speaks from the heart. I knew when he described me as better now I had the chair I had to keep it. I wish I had been diagnosed at school, my life could have gone so differently 
    A laugh a day keeps the psychiatrist at bay. 
  • marmalademarmalade Member Posts: 69 Pioneering
    I am happy to hear you are doing so much better with your chair.  I am too and it is definitely a lifeline for me and allows me to keep functioning beyond a level I could do without it.  I am sorry your children think their lives have been ruined by this, sadly it does make you realise that it does affect your lived ones too and has an impact on them.  Your post is a reminder of that.  Thank you for sharing 
  • Chloe_ScopeChloe_Scope Administrator Posts: 10,666 Scope community team
    Hi @LaughingLolly and thank you for taking the time to share this with us all. I appreciate how difficult it can be to start using mobility aids but I am glad it has helped you. :)
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  • Jean EveleighJean Eveleigh Member Posts: 87 Pioneering
    I have EDS and if I didn't use my mobility aids *wheelchairs and walking frame) I wouldn't be able to reach the street from my front door - I can walk a little in an environment I know well and feel safe in - and yes sometimes I have to walk a little while my other half or carer carry my frame or chair but I ignore the stares or grumble about them but don't let anyone force me to be housebound out of fear of using myequipment -   -------   my body tells me I kneed it so I use it
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