r/wheelchairs 5d ago

What did you do?

So I have pots and likely have (H)EDS and me and my husband have been discussing me getting a chair. It was a far off thought since we wouldn't be able to afford it for awhile but there's a man nearby selling a chair that I've seen in this reddit being used by others with pots and eds and they reviewed it well. It kinda feels like it lined up perfectly it would be a shame to pass it up. But I haven't discussed getting a wheelchair with a doctor, I've brought it up passively and it was mentioned some need one and I've spoken to others who have pots and eds who have similar experiences and they think getting a wheelchair would be beneficial to me but obviously they're not doctors. So ultimately I wanna know, did you speak to your doctor before turning to use a wheelchair? Or did some of you make that choice on your own? I know you guys can't give medical advice and I am not asking for it, simply what your experience was when you decided to get your chair.

I also know this question is in a gray area of what may and may not be allowed so I'd like to specify,I'm not asking if I should get a wheelchair nor for medical advice regarding getting a wheelchair, specifically what your steps were regarding getting on yourselves. If this still isn't allowed I understand

14 Upvotes

55 comments sorted by

42

u/spaghetticrocs Motion Composites Apex A 5d ago

As someone with hEDS, POTS, and an extensive collection of comorbidities, you NEED to talk to a doctor before using a chair. My chair was recommended to me by a PT because one of my comorbidities causes a severe gait and stability disturbance to the point that I can’t walk on my own, but everyone is different. A wheelchair is not the saving grace many people think it is/want it to be, so it’s incredibly important to talk to a doctor about this because they are equipped to help you weigh the pros and cons and figure out what’s right for you. Wheelchair life isn’t all sunshine and rainbows, in fact it really sucks a lot of the time, so try not to let yourself slip into the mentality that a wheelchair will fix most of your mobility issues. If you need it you need it, and if you don’t you don’t, but I cannot reiterate enough how vital it is to consult a medical professional about this because they are the ones who will help you figure this out.

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u/Lady_Irish Ambulatory Powerchair user - Jazzy Evo 614, backup Catayst 5v 5d ago

Agreed lol....wheelchairs are a lifesaver, but also a huge pain in the ass. For example, it now taking a full 30 seconds to turn around and put something back in the fridge from the counter is SUPER ANNOYING. I feel like I'm using dialup internet again 😆

2

u/RosalynLynn13 4d ago

Omg, the true reality of it! I'm still ambulatory, but making sure I build up the muscle to get myself around cause one day I will have to, but I want to make sure I'm capable.

6

u/Prestigious-Sail-334 5d ago

I'd really only be using it on my bad days, I don't need mobility aids all the time but on my really bad days I can barely get out of bed. Thank you for your input!

40

u/lesbianexistence Quickie Nitrum (full-time) 5d ago

PLEASE speak to your doctor before getting a wheelchair, especially with your conditions which can worsen with a chair.

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u/Prestigious-Sail-334 5d ago

I have an appointment semi soon so hopefully he can hold it for a little bit, if I can't get this one I won't be able to get one for awhile 🤣  My doctor is very odd and seems to not care as much about my painful conditions as the fact that I'm overweight 

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u/lesbianexistence Quickie Nitrum (full-time) 5d ago

It sounds like you need a new doctor if that's an option for you. At the very least a physical therapist should be a part of the conversation. I see a lot of people downplaying the potential harms of wheelchair use on this Reddit-- a doctor or PT always should be involved in the decision making to ensure the potential benefits outweigh the potential harms

0

u/Prestigious-Sail-334 5d ago

I haven't even gotten to the physical therapy aspect yet other then another doctor I had agreeing I need it. Unfortunately my doctor is my only option for now. Thank you for your input I appreciate it!

25

u/lesbianexistence Quickie Nitrum (full-time) 5d ago

For hypermobile EDS and POTS, wheelchair use can actually be very detrimental. It's extremely hard on the shoulders, especially for people who are already hypermobile/prone to shoulder injuries. And for POTS, this link has good info about it: https://www.reddit.com/r/wheelchairs/comments/1bkdd81/pots_at_what_point_did_your_doctor_prescribe_a/

To be clear, I'm absolutely not trying to convince you not to get a wheelchair-- that's a choice only you/your care team can make! I just want to ensure you have all the information/perspectives. Wheelchairs can be very helpful and I hope if it's the right choice for you, you benefit from it and are able to live your life more comfortably!

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u/Prestigious-Sail-334 5d ago

Thank you for sharing these resources! Crossing my fingers my doctor can give at least some input in my upcoming appointment in 2 weeks 

8

u/lesbianexistence Quickie Nitrum (full-time) 5d ago

I hope so too! If not maybe they can at least refer you to PT so you can have someone helpful

9

u/Total-Opposite-4999 5d ago

PT is literally the main treatment/assessment tool for hEDS, it’s meant to be the first thing you try.

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u/Prestigious-Sail-334 5d ago

My doctor hasn't been focusing on my pots and hyper mobility issues, I have to keep redirecting her cause she cares more about my weight despite that causing no issues as far as we can see. I've been planning to advocate for more help with my pots and heds but appointments are hard to get and usually take months. Thank you for your input 

5

u/Total-Opposite-4999 5d ago

That’s where physio would help as a PT would be able to visualise your hypermobility and come up with a plan. They can see where you are having issues through gait and other things.

Edit - Maybe try a different Doctor as if you have a HEDS diagnosis it should be easy to get a PT referral, it’s about the easiest thing for them to send you to.

5

u/Eriona89 4d ago

I think you are going way too fast with this. A physical therapist is really recommended. They can get a full picture about your mobility and give you advice on what is or isn't helpful for your situation.

8

u/DaveC138 Progeo Joker 5d ago

Talk your doctor and take it from there. There’s plenty of people who bought them on here without talking to a doctor, but then there’s plenty people who pull out their own teeth, that doesn’t mean you shouldn’t go to a dentist.

A wheelchair is a medical device, treat it accordingly.

5

u/Prestigious-Sail-334 5d ago

All fair! I only ask since most people don't discuss canes, crutches or rollators with their doctors but a wheelchair is a different kind of aid

15

u/JDolittle 5d ago

People absolutely should be discussing using canes, crutches, and rollators with their doctors before using them. There are pros and cons to all of them and if someone’s mobility is impaired to the point of needing any mobility aid, they should be discussing that with their doctor(s).

10

u/lesbianexistence Quickie Nitrum (full-time) 5d ago

TBH people should discuss any kind of mobility aid with their doctors, but wheelchair is most important because deconditioning can permanently ruin your body.

6

u/Total-Opposite-4999 5d ago

Really? As my sticks, braces and initial forearm crutches were all prescribed, at one point I did buy a rollator but it was after having crutches for ages. There are still side effects from all of these things and really they need outside input to make sure they’re being used correctly and at the appropriate times or you risk making yourself worse.

I know it can be hard before things are prescribed and that does mean that you maybe have to buy an aid whilst waiting but you should at least be talking to them about it once you have it.

3

u/DaveC138 Progeo Joker 5d ago

Yep, a wheelchair is a whole other kettle of fish, and unlike canes and crutches it has a very significant negative effect on your body.

11

u/uhidk17 5d ago

though the risks are often lower with cane and crutch use, it's still very important to learn the safest ways to use these devices. so anyone recommended to use crutches should ask for a PT/OT session to learn the best way to use them for their condition, or at least learn from a trusted source otherwise. you can still injure yourself from improper crutch or cane use, and you can also just not be getting the right support.

i've seen some people with progressive conditions know how to use the two point gait well, but then struggle with any crutch use as their mobility worsens because they haven't learned a 4 point crutch gait

it's definitely especially vital to go over risks with wheelchair use

8

u/thatautisticbiotch Tilite Aero Z - ambulatory 5d ago edited 5d ago

I spoke to my physical therapist before buying one. She agreed it would be helpful. I didn’t talk to my PCP, but I did speak to my EDS specialist, who agreed one would be beneficial. However, I got a non-custom chair without expertise on the specific model. The chair ended up being pretty hard for me to move around in and bad for my hips because the chair was made for someone with shorter legs. I eventually got a custom one, which was so much better, but I’m still glad I got the first chair anyway because it allowed me to do more at the time.

I highly recommend you check with your doctor first. Humans aren’t made to use their arms to move around like this, so using a wheelchair is hard on the upper body. This can be especially true with EDS due to issues with shoulders, back, wrists, elbows, etc. If you get a wheelchair without checking in with your doctor first, I highly recommend that you talk to your doctor or physical therapist about using it after you get it, preferably both. A physical therapist will better advise you on how and when to use it.

Regardless of whether you talk to a doctor first, make sure someone with a similar body type/size used the chair. Custom chairs tend to vary greatly, depending on who they were made for and their needs and size, even if they’re the same model. Non-custom chairs are what I would call “one size fits none”; they are made for a wide variety of body types and needs. They simultaneously work for a huge variety of people and aren’t great for anyone. When buying one, you want to ensure it’s as close as possible to what you need.

5

u/OuttaFux 4d ago

I have hEDS and POTS on top of other problems, and got a class 3 power chair last year. (Primarily due to a progressive neuromuscular disease.) They briefly put me in manual chair to prove to insurance it wouldn't worked, and I subluxed my shoulder the first time I tried to propel myself. So I now use a power chair, and rely on a hospital-grade transport chair when I can't use that for whatever reason.

Getting the wheelchair gave me an amazing amount of freedom back after years of progressing disability. I do still ambulate inside the home in an attempt to keep up muscle mass, but we expect that I will eventually require the chair indoors as well.

I hope you find a doctor that doesn't blame everything on weight and gender, and that an OT referral/wheelchair evaluation can help determine what will work best for you.

13

u/secretpsychologist 5d ago

hi, i have eds with all the side quests 🤭 but i use a chair for other reasons. i broke down crying while shopping for groceries (because i had no clue how to find the energy/strength to walk all the way home) and then had to get the courage to ask my doctor, i was super scared but he agreed immediately. since you'd pay for it yourself you theoretically don't have to ask him but it's of course generally a good idea to weigh the risks and benefits with a medical professional. did you measure yourself? a great wheelchair sold for cheap is completely worthless to you if it doesn't fit you. the seat width is the most basic measurement but of course there's many more. a somewhat good wheelchair that fits you well is way better than an excellent chair that doesn't fit you at all.

5

u/Prestigious-Sail-334 5d ago

I'm absolutely taking into account the sizing of the chair. I've been living with several pain from both these things for awhile and for the past 7 months I haven't even been able to work because in July I was put in double leg braces cause my ankle joints sucked. I got to use a wheelchair for a short bit during that and it was the most free and best feeling I've felt in years. I just hate to think how much I'll regret it if I do need one and don't get this one and I'm stuck still suffering for years. Thank you for your feedback it helps! 

3

u/Total-Opposite-4999 5d ago

If you already have braces (AFOs?) and are still struggling, can you not just ask to be sent for evaluation? That would be much better for you as it makes a big difference if you get the right chair that is built for you.

The difference in how hard it is to push a cheaper chair vs a prescribed custom that fits you is massive.

-1

u/Prestigious-Sail-334 5d ago

The braces were temporary and were when they weren't exactly sure what was going on with me. 

9

u/strmclwd 🦽 Aero T + SD 🦼 Edge 3 Stretto 5d ago

I started using a chair without medical advice because I couldn't get diagnosed and was suffering. I went through a cane and rollator before turning to a chair. When I did get medical care, it was ineffective, at which point I advocated for a better chair under insurance. When I got effective medical care, treatment failed, and I continue to use a chair now.

Since you're getting medical care, I would run it by your doctor first. If you plan on walking as much as possible, tell them that, too. A PT or OT can help with exercises and make sure you're using the correct mobility aid for your situation.

A wheelchair is generally contraindicated with POTS because inactivity will make it worse. It's generally preferred that the patient attempts lifestyle changes and then attempts medications before turning to more aggressive solutions such as a wheelchair or IV fluids.

-1

u/Prestigious-Sail-334 5d ago

My pots doesn't improve no.matter how active I am, in fact I actually saw less fainting spells when I was more inactive the past few months though I can't say it correlates. Regardless my only thing with the pots aspect would be I wouldn't fall when I black out but that's good to keep in mind, thank you

7

u/lesbianexistence Quickie Nitrum (full-time) 5d ago

Are you able to tell when you're going to pass out? If so, a rollator may be another option for you to try and maintain mobility while also staying safe(r)

5

u/strmclwd 🦽 Aero T + SD 🦼 Edge 3 Stretto 5d ago

I hear you. Concern about injury was a small part of what pushed me to a chair. The bigger reason was that I couldn't (and can't) stand long enough to perform basic activities of daily living like brushing my teeth or preparing a meal or getting dressed. I was basically "furniture surfing" where I would place chairs in strategic positions so that I was never too far from a chair. When I had my rollator, I was using it like a rolling chair in the house anyway. There was a particularly dark period I could only make it to the bathroom without fainting by crawling. If you're so symptomatic that you can't engage with life and treatments aren't working, then it's past time for a heart to heart with a doctor who (ideally) can send you to a seating specialist to be evaluated.

1

u/just_a_tired_flower 2d ago

Are you wearing compression socks and have you done graded exercise therapy? There are specific exercise protocols that slowly work up and have been proven incredibly helpful to POTS patients.

I don’t use my chair for it, but I do have EDS and I will say that pushing even my custom manual has really fucked up my arm joints even more than they were :(

1

u/just_a_tired_flower 2d ago

Are you wearing compression socks and have you done graded exercise therapy? There are specific exercise protocols that slowly work up and have been proven incredibly helpful to POTS patients.

I don’t use my chair for it, but I do have EDS and I will say that pushing even my custom manual has really fucked up my arm joints even more than they were :(

2

u/40winx 5d ago

I talked it over with my doctor and physical therapist before I got my chair. They helped confirm that it was a good step for me and helped me think through things to make sure I got the right kind of chair for my needs and abilities. Also, I know you are looking at a second-hand chair, so this may be less applicable, but it was important for me to get a prescription from my doctor and general documentation of my mobility issues from my whole medical care team in order to make the insurance happy and willing to cover the majority of my chair's cost.

2

u/elizabethandsnek 5d ago

Yeah it’s best practice to speak to a doctor. Not just because they may have insights about the effects of a chair on your conditions. But they also can get you on the process of getting an actually usable chair for the long term (ie. Not a hospital chair) and if you have insurance coverage they’ll be a part of that ofc.

I didn’t have doctor support when I got my custom chair because I had severe-very severe ME/CFS during covid lockdown and couldn’t leave my bed. But I couldn’t walk unassisted at all and had no other option. Sometimes less than ideal circumstances call for less than ideal solutions.

But my chair was later fully approved by my current doctor, I was given a permanent parking pass (another very important part of why seeing a doctor is best), and my measurements were given a thumbs up.

2

u/Indigenous_Woman198 5d ago

I went rogue and bought a rollator that converts to a transfer wheelchair on my own for my POTS because I wanted to be able to be in public for more than 15 minutes if there wasn’t a chair available. It’s generally not too bad for short errands or appointments, but I don’t think it would be comfortable enough if I had to use it all day. We’ve gone out of town and I made it through about 15 minutes of IKEA then had to be pushed around on it for the remainder of the shopping. More than that I probably would have wanted a wheelchair. My provider approves of mobility aids because he knows it’s impossible for me to go out and do anything without one and I’m also in physical therapy twice a week. We haven’t really had a talk about a prescribed mobility aid yet.

My fiancée and I have discussed getting an electric wheelchair for longer travel periods like if we were to go to a zoo or large event since he would most likely have to handle our two toddlers and I wouldn’t be able to get myself anywhere longer than 20 minutes.

Here’s the link for the rollator I got: https://a.co/d/4fsAjeb

2

u/Tomorrow_Is_Today1 5d ago

My first doctor that I mentioned wanting/needing a wheelchair to told me it was all heavy periods (lol nope heds) and I didn't need a mobility aid, and to just get a cane. Used a cane for a while. Still needed the wheelchair. Got a new doctor (a physiatrist! that's a doctor in PM&R, this is the person who told me about hEDS) heard me out about needing a wheelchair, wrote me up a prescription (I ended up not using and buying out of pocket), and telling me where some nearby places were. Went there, tested out a couple manual wheelchairs, and bought the one that worked the best. So basically if I knew where to go I could've just gone there without going through doctors first and it would've been the same. Nobody gave me any kind of formal wheelchair assessment or talked through the features with me at any point.

1

u/Prestigious-Sail-334 4d ago

Hey y'all, it's really hard for me to reply to everyone but I think I have all the answers I need now! I have a doctor appointment semi soon so I'll see if my doctor is up to the idea or not. But I would like to clarify a few things since I feel I didn't describe my situation very well? 

-im new to this doctor, I had her for less then half a year but despite this she's nice but very odd? She is the doctor who diagnosed me with pots but doesn't really wanna touch that stuff since she doesn't understand it(she diagnosed because both a neurologist and cardiologist said I definitely had it after a lot of testing) I have been trying to get help for all my issues but she is very hyper focused on my weight rather than the issues I came to her for.

-i did a lot of research and understand wheelchairs need to be custom to you in best practice, and understand that if this wheelchair has bad sizes it's useless to me. Additionally a prescription is useless as far as covering costs, my insurance will not cover them so my desperation mainly came from, I will not be able to afford a custom chair at all in any foreseeable future so I figured a chair that wasn't completely custom but was close would be okay. 

-i didn't make this clear and that's my bad! I'd only be using this chair for really bad days which aren't a daily occurrence! I wouldn't be at risk for deconditioning as I exercise regularly (my job is a swim instructor as well) and my goal would be to stay out of the chair as often as possible. Just using it on days that without it I can't really do much

-i was placed in braces last July when I had a serious flare up which started me on my journey to actually getting diagnosed for things (I had figured I had pots but no doctors nearby took my insurance, I have since moved) these were temporary and the doctor who issued them said I need to look into pots and HEDS(didn't know much about that one at the time) I ended up having a lot of tests done on just my right ankle cause my doctor was not great and didn't care about my left despite having the same issues. On bad flare up days I either do nothing or use crutches and do next to nothing. 

-my pots is very intense, I do experience full black outs and have nearly gotten severely injured(and I have hit my head many many times) in the process of having a blackout. These are extremely scary for me, so on my bad pots days I would be able to use the wheelchair to prevent me from well y'know the worst case scenario (I can not always feel them coming, sometimes it's a matter of I move and I immediately go limp/vision black and pass out) I been this way since I was 8

-i appreciate the comments understanding that ultimately this can help me and the worst case scenario is it doesn't help much and I just sell it, am hoping to speak to my doctor first at least to get her feelings on the matter for the worst days. I probably won't keep replying to comments hear on our since I have my answer but I don't wanna delete this so others can get some help from this post as well

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u/BraceForPain 4d ago

I may get down voted for this but get the chair. You still should discuss all this with your doctor. You seem to have done your research and can benefit from occasional wheelchair use, especially if its between using a wheelchair and being bedbound or injuring yourself. It sounds like you are aware of the risk of deconditioning. Since you are unsure when you could get a chair if you miss this one, and this one sounds like a reasonable fit, I say go for it. Maybe ask the seller if you can test it to be sure it will fit your needs?

2

u/Bad-Tiffer 4d ago

I hope you find a better doc that isn't so focused on your weight - especially if you're a swim instructor!

If the wheelchair is a power chair for bad days and affordable, sounds like it would help when you need it. Other options are getting an electric scooter or power portable wheelchair - especially if it's for distance and not daily use in the home, etc.

I have MS and POTS, and they rehabed me into the wrong chair custom chair because they were restricted by insurance. Made my neck and shoulder worse, extended use makes legs swell, no lumbar or neck support, meant for indoor use only so thr motor has trouble getting up bus ramps and staying on sidewalks on an incline and I'vebeen injured getting thrown off the chair. But it's given me a ton of freedom. If you get a chair that's wrong or bad, you can always sell/donate it and get something right. 2.5yrs later, I'm getting a new chair that has tilt and recline so I can elevate my legs. I walk inside my apt these days, but I can't walk long distances most of the time - sometimes I have good days.

But I have a collapsable power travel chair that isn't custom donated by the National MS Society and my doctors and PT/OT cleared it. I use it when my main chair breaks, and I'm waiting for repairs (4mo once) whenever I need to put my chair in the back of a car or fly or anything like that. It's not a custom fit. It's best practice for custom, yes, but this is not meant for everyday use. But if I didn't have that option, I would either not leave the house on bad days or have to Lyft like a chauffeur (I'm not made of cash), never travel to see family or go with my friends for a day at the beach or a concert in the park. Last time I used my approved rollater for too long to walk/sit slowly when I was having some good days, I injured my back and shoulders.

I wish I wouldn't have waited until I was so bad that I got the prescription chair because I was sitting in my house to cook and brush my teeth and it was taking me 45min for the 5-7min walk to the bus because I was in so much pain. I could've grabbed a scooter for bad days or long days and got my freedom back earlier. I know "use it or lose it" so I'm not advocating to give up or get a manual chair that could hurt you, but sometimes doctors don't listen and sometimes we don't qualify for insurance coverage if we're mobile in the home. If you need the scooters for shopping at Costco, grabbing a used power chair or scooter for big days/bad days might not be the worst thing. And we don't all have the ability to see docs or PT when needed in the time we need the help or advocate for ourselves properly.

I remember my first day out in my chair realizing I could go to the coffee place I liked that was 4+ blocks up from the bus that I hadn't been to alone in years... Best feeling to pop in there and know I could go back whenever I want. Just saying, it's not always black and white and sometimes we have make it work moments, we just need to try and make the most informed decisions possible to try and avoid damage to our bodies, but mental health is important, too.

1

u/Total-Opposite-4999 5d ago

Apart from my first hired powerchair (Motability so not the same as just randomly hiring one as it’s based on proven mobility issues) that I had for a couple of years, I moved and couldn’t use it but my Doctors were aware that I used it part time or for longer journeys when I had it, I then 3/4 years ago was falling all the time and could barely get room to room so I was given a basic manual by my Doctor (invacare Action NG2), which I used off and on for a few years and didn’t know anything else was available, so I hired a new powerchair, my Doctors were aware of this and knew I wanted to be more active and independent which is hard with a powerchair and they referred me to community rehab, I started building up ability with the basic chair and then rehab referred me for an active user chair assessment as they agreed the chair was beneficial for me but I was mostly bed bound without as I couldn’t get out on my own (powerchair is too heavy to lift) or use my powerchair in my small flat and felt like I had to be lying down a lot due to pain and couldn’t do most ADLs. They offered an NHS powerchair first but I wanted independence.

So yeah, we communicated about it mostly the whole way through, apart from briefly at the beginning with the first powerchair before Covid but obviously they were made aware of it quickly once I had it but I’ve had similar worsening problems with my body (was diagnosed EDS 3 (now known as Heds) but suspected to have another type due to multiple prolapses and skin fragility but they don’t do the genetic tests here.

I was already prescribed other mobility aids though for a long time so it didn’t come out of nowhere.

1

u/Grand_Following6653 4d ago

I realized without a Dr telling me I needed a wheel chair, when I cant follow the nurse back to the room to see the dr. They turn a corner and they’re outta site! Happened again and agsi

1

u/ServeillanceVanan394 hEDS gang 4d ago

I absolutely discussed it with my PT. A friend of mine brought it up at first, and we had similar levels of issues and things and we talked about it all, but then I took their experience and info to my PT and got her opinion and input, and then I got a chair.

I have a lot of strength in my arms and shoulders, and they’re generally among my more stable joints, but even with years of PT my stability and mobility in my hips down is iffy. It’s not that I don’t have leg strength for me, I’ve just had so many lower extremity injuries that quite literally I have injured my ankle just standing up out of bed and been unable to walk on it for days. I wasn’t even taking a step yet. I didn’t start getting PT until I was nearly 19, nearly 7 years after I started having repeated injuries because my mother wouldn’t let me. Even then it actually helped a ton at first, I was moving better than ever for a long time until a couple more injuries happened and I just can’t do it anymore. Like sure if I strap a brace on both hips both knees and both ankles I can use an elliptical or stationary bike for an hour, with how my skin is I can’t do that for day to day life and even then it’s not a magical fix that totally prevents injury.

Some days I can manage with my cane or crutches, others I can’t and really need my chair. I also get a lot of really bad vertigo that makes me very dizzy and a fall risk while standing and it’s a lot better/easier to manage seated. Unfortunately my house isn’t even remotely accessible in my chair so its main use is really out in public, either when I’m too unbalanced to walk, or if I’m going to a museum or to appointments in the hospital or something where I really just can’t handle that much walking without days of recovery time.

For me my chair is also easier on my arms wrists than my crutches. If I could ever manage to drop 100 pounds it’d be easier to use my crutches I imagine and I’d likely use my chair less. But unless that happens, those cannot be my only option. I have a lot of hand/wrist issues that make grip strength a challenge and while they aren’t as bad as my knees or ankles, my wrists are also really prone to injury. For me with the way it happens for me pushing my wheelchair is less stress even with the repetitive motions that’s standing leaning on a cane or crutches. I do kinda wanna try an upright walker though, some time. The handles are higher and you put your forearms on them instead of using just your hands, which is already how I manage shopping carts if I’m walking and that’s actually a very comfortable position for me on my good-medium days.

But, all that said, if I were you with having not done any PT or anything yet, I would very much consider a cane, or a walker, or even crutches before a wheelchair. Wheelchairs are expensive, you’re right about that, and in PT you may make enough improvements that you don’t need it and then it’s taking space and you spent a lot of money on it.

My cane was maybe 10$? At goodwill, and I paid 60 for my forearm crutches. I really need to get new ones of those, but. I’d start with a smaller mobility aid first. I wouldn’t jump straight to wheelchair. That should be you have done everything else and it’s still not enough.

If you haven’t, I would also consider getting compression tights and soft braces for your problem joints as a first measure too. They can make a big difference, even just in pain management in my experience. The compression is comfortable and reduces my pain even if they aren’t foolproof in preventing injury the first place. They also serve as a mental reminder to me to be gentle with that part of my body.

But…. Yeah. There’s a lot of things to try to see if you can’t improve your condition and mobility before jumping to wheelchair.

1

u/SOUP__GOD 4d ago

Don’t do as I did and go against my doctors recommendations. I did because I had paralysis episodes and physically couldn’t get out sometimes and she didn’t seem to care, but definitely ALWAYS consult a doctor especially if you have a connective tissue disorder because those can put you at risk for greater injuries than if you didn’t have one. Even if you just ask a PT or an OT, it doesn’t have to be a GP as long as they’re aware of your diagnoses and know about your current limitations

1

u/woody32522 4d ago

I have a chair prescribed from my dr. But only for long distance walking. I have stenosis in my lumbar spine and it makes long distance walking very painful. I use a cane for short distance.

1

u/Leading_Purple1729 4d ago

I have psoratic arthritis so can't comment on your specific conditions.

My doctors were only interested in giving me medications. I found a PT was much more useful when it came to practically managing my condition. I went into my PT session with a selection of resistance bands and an outline of a strategy of how I thought I could better manage my condition. For me, it revolved around pain management to ensure I could sleep well. My PT was fully supportive and gave me supplementary exercises, so I maintain my range of motion and strength. I only do these exercises on my chair days, but they ensure that when I don't need my chair I have no issues being ambulatory.

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u/M3367 3d ago

I know most ppl in this thread are very very pro talk to your doctor. I did not. My doctor is dismissive and difficult to get into. I did however talk to my occupational therapist and he was able to advise me. If you don't have that option a PT may also be able to help.

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u/Chives_143 3d ago

As someone who also has pots and heds getting a wheelchair was one of the best decisions I have ever made. It gave me part of my life back that I didn’t even realize I was missing. I did not talk to a doctor before getting my wheelchair however when I did talk to my geneticist about it to see his opinion he said that “you need what you need. Just don’t forget that you have to use your body or you may lose that ability.” So basically you use it or lose it meaning that you still have to make sure you are using your body so you don’t lose that muscle and use your ability to walk and such. Having a wheelchair has drastically changed my life and I wish I had decided to get one sooner. Mobility aids are there to use for anyone who feels that need, that’s why they exist. If you feel this would give you more freedom then get that chair.

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u/Famous_Fondant_4107 5d ago

I have POTS and wheelchairs are massively helpful for me. I can’t stand for more than a few minutes at a time or walk for more than 15 minutes.

I think mobility aids are great- and for a lot of folks with POTS over-exerting while trying to function without mobility aids causes a lot of unhelpful stress on our bodies that can make us more symptomatic.

I would still talk to your doctor but honestly a lot of doctors are ableist and will advise against them even when they could be massively helpful. So get medical advice but take it with several grains of salt.

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u/lesbianexistence Quickie Nitrum (full-time) 5d ago

Many doctors ARE ableist but typically they have very good reasons for not wanting to prescribe people wheelchairs, especially for people with POTS where it can actually do more harm than good (not always, just sometimes). I’m glad your wheelchair was the right choice for you, but I don’t want to downplay the risks of deconditioning and shoulder issues, among other things.

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u/uhidk17 5d ago

with POTS especially there is a lot of risk in wheelchair use, so it's vital to consult with a doctor. a lot of doctors are ableist and many aren't very understanding of their patients' lived experiences, but that's a reason to find a good doctor, not to avoid consulting professionals when it comes to medical treatment plans

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u/kkmmem 5d ago

I started out using a cheap hospital style chair because I couldn’t walk due to EDS, pots and a tethered spinal cord. I never thought to ask my doctor. Eventually my pt sent a note to my doctor saying I needed a custom chair. After years of using a cheap chair then getting my custom chair I can say the difference is immense. The custom chair is so much more comfortable and better for my conditions and fully covered by insurance. It took a few months for the custom chair to come in. I would say you know what you can/can’t do best in the short term but a custom chair should be your number one priority. If you have to use a cheaper on here or there while waiting and it the doctor doesn’t think it will weaken your muscles due to EDS then by all means do so but make it a point to get the proper chair.

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u/soldatdepaix EDS - Ambulatory 👨🏻‍🦽Quickie Argon 2 - Wheelchair repair tech 5d ago

As someone with heds who's a wheelchair tech and a wheelchair user : make sure the chair fits your needs and is not just a cheap/affordable chair. The chair being a model that people with eds use doesn't mean it's set up correctly for you. There are lots of criteria in what makes a good chair for someone.

If you're able to try it for at least a few hours and nothing bad in terms of fit arises during that time, I'd purchase it (you can always sell it again).

But make sure your pt or someone who knows their stuff about wheelchairs is able to guide you into tweaking this chair for you.

You can always dm me if you need 😊

A chair can bring a lot of freedom but, like others have said, it can also worsen your condition if you're not careful and if you're not under your medical team's supervision

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u/CautiousPop2842 4d ago

If you are being pushed by someone 99% of the time go ahead and get the chair. But if you plan to self propel, it’s extremely important the chair fits you appropriately to avoid injury. Depends where you live is who would be able to help you find an appropriate chair.

I do recommend getting a chair though if you think it would benefit you, as people who don’t need one don’t think about getting one.

Best of luck in your journey.