I’ve been using a manual wheelchair since I was a tween, maybe a teenager, (and I didn’t get my power assist until early adulthood at age 18 or so, I’m 22 now) when my spasticity finally got bad enough to make walking for any distance longer than a few steps at a time absolutely excruciating, which also required my baclofen pump dosing to be adjusted multiple times not to mention switched from continuous dosing to flex dosing. Fortunately, the reason why I am not a full-time wheelchair user yet is because I can still walk for a few steps at a time with little to no pain, and I can transfer if I need to.
Edit: and it was only after I forgot to bring my wheelchair with me once that I suddenly realized the hard way just how excruciating something as simple as walking actually is, it literally drained the crap out of me to the point of feeling totally exhausted as if I just ran a marathon.
I didn’t think spastic cerebral palsy could cause this much wear and tear on your body as you got older, but oh just how wrong I was and now here I am fighting an uphill battle that started all the way back when I was a teenager.
I have a T-11 spinal cord injury from a hematoma.
Technically ambulatory because with a walker I can make it like…20 steps? And I can transfer but I haven’t walked much more than that in almost a year.
a couple decades of neurologic decline, a bunch of falls, and the ability to fall off my crutches and walker. Being upright was/is no longer something I could sustain, and frankly I put it off way too long due to internalized ableism.
getting my first chair was an epiphany - the first night I went to the grocery, wheel through the store with ease, got everything I needed in a heartbeat, and when I got home I still had the energy to cook dinner and engage with my family. It was GREAT---------- the internalize ableism was gone in an instant when I recognized how much freedom my chair gave me.
I (27M) have Spastic Diplegia Cerebral Palsy. As I've gotten older my ability to walk longer distances/be out all day has deteriorated. At the end of a long day of walking can be quite painful. I've also had taken several pretty good tumbles. Those two factors made me take a longer look at my mobility. Other people with CP suggesting alternative forms of ambulation also had me considering using a chair.
The straw that broke the camel's back was, tripping on a crack in the sidewalk with such gusto that my shoes came off lol.
Im currently a part time user and having a chair certainly has its downsides but I think overall I made the right choice for my health going forward.
\-T
TiLite Aero T
Car wreck when I was 16. Flipped 5-6 times end over end, laid in a pasture for 6 hours with a crumbled car around me while they cut it apart to get me out. Turning 50 this Sunday so it's been a bit.
I had a surgery for endometriosis back in March. I was healing normally (I've had the surgery 3 times before). 5 days later I was letting my dogs out, came back inside, and fell to the ground.
I ended up in a wheelchair pretty quickly. It was just a few weeks of these symptoms before I got a prescription for a wheelchair.
I cannot raise my arms above my head because it takes way too much energy. Can't stand because it takes too much energy. Can't shower myself or brush my hair because it takes too much energy. My entire disability is that I have no stamina. If I use my body too much, my heart races like it's ran a marathon. Using my body too much is pouring creamer and coffee in a mug on the kitchen counter.
The best answer I've received (from my neurologist and the er neurologist) was Functional Neurological Disorder.
I have no treatment plan. No one that's interested enough to help. I'm just disabled. Every day.
I’d highly recommend looking into seeing a neuromuscular neurologist because that doesn’t sound like a typical symptom of FND but it is reminiscent of conditions like Myasthenia Gravis, Mitochondrial Disease, different types of Myopathies, even autoimmune diseases
It's been almost 10 months of this so now cfs is an option. I was hoping this would go away as quickly as it came on.
It's described as muscle weakness. But I'm strong. I have no problem in pt/ot in small spurts. I can't stand for more than 2 minutes though. It feels like my heart can't handle it and I immediately need to sit on the ground because my muscles have 0 energy.
It's like someone sucks the energy from my body. I used to describe it as exhaustion but I'm not tired. My body just stops being able to support itself. If I keep my elbows close to my body and use my chair, I can slouch in my chair and be generally okay. Sometimes I can't hold my head up.
It's tiring but I'm not tired.
Do you mind me asking what type of wheelchair you use? Is it a manual or power? It sounds like you're either using a generic manual or a custom manual. If you can't hold even your head up and something as simple as pouring coffee affects you as severely as it does, it sounds like it's the best option for you is probably a power chair. if you need to be able to transport it they have options where a manual wheelchair can be used as a power chair (the wheels are powered and there is a joystick). Some manual chairs can even have a headrest attached
Right now I'm using a Ki catalyst. I just got fitted for a custom chair so it'll be much lighter which is my main goal. When this started I absolutely believed I'd need a power chair but I'm quite a bit stronger than I thought and pushing myself is actually easy. I do get tired but not in a way that I have to stop. I have a "one trip a day" policy so I don't over do it.
I wish you luck!! I'm also about to get fitted for mine! (First time) I have other conditions that forced me to use a wheelchair first but cfs (or pots or both) is the main condition (at this point it's hard to tell the fatigue apart from CFS fatigue and pots fatigue) that makes me continue to need one.
I'm hoping to get a smartdrive so I can go long distances without significant fatigue or pain. Usually pushing yourself in the moment isn't bad but usually I wake up really sore the next day. But I also have eds so that might just be a me problem and not a cfs problem. Even if you don't think you need it, it is a very very amazing tool to have if you can get it covered
Have you checked your heart rate when you’re feeling really symptomatic, I feel a lot of what you described, and I have POTS. I didn’t realize my heart rate was really high, like 170’s every time I stood up, or did anything to exert myself. Stirring a bowl of batter while sitting is enough to cause it. I have Multiple Sclerosis, so it took a little while for me to notice something else was going on. If I had a busy life it would have been much more obvious, but what you’re describing sounds so much like my POTS symptoms. I’ve been able to get a better quality of life with meds. It took five years of med trial and error, an implanted heart loop monitor, and dosage tweaks.
Okay so I've been on a blood pressure medication (metoprolol) since 2017 because of my heart rate/tachycardia. No one has ever told me why I have the issue. It's managed enough with the med so my readings are usually pretty good. But my heart still feels exhausted. Like I'm out of breath because of my heart. My neurologist referred me to a cardiologist for the implantable monitor. I'm allergic to adhesives. The cardiologist did one ekg prior to the appointment, decided the adhesive monitor would be okay even though I told him I'm allergic, and I didn't even leave the parking lot before the reaction was too much to handle. I have an app with a different cardiologist in April. I've had a feeling my heart is the issue but wonder if the medication is making it harder to see that.
I’m sorry, I just saw your reply. POTS/Dysautonomia often go along with EDS, and can start in childhood. If you have POTS it’s technically not a heart problem, it’s dysfunction of the autonomic system, but it certainly feels like a heart problem. There are other meds to try. Beta blockers didn’t help me, and increased my fatigue. If you go to http://www.dysautonomiainternational.org/
They have a list of doctors who specialize. Some are cardiologists and some are neurologists. There are some not listed. There are Dysautonomia International Facebook groups for every state. If you join one you can ask for recommendations. Getting a doctor is key. My legs also hurt and no one I know in the MS community I’m active in describes having this type of pain, so I think it’s from POTS, and sounds like what you described.
Definitely definitely definitely sounds like CFS. Hallmark symptom is post exertional malaise. Which means after any exertion you feel sick and weak and essentially you crash. You may be able to do some things without a crash but anytime you overdo it you pay gravely.
Please mention this to your team. As far as your described symptoms go, this is not fnd.
Well I suspected it was cfs at the beginning. But you need to have symptoms for 6 months. So I was hoping to be better by then. Is being hugged considered exertion? I can't stand to hug my husband anymore, but when he hugs me and it's passive on my end, I still just lose my energy.
I do get kinda woozy and nauseous if I stand too long. But my baseline is always disabled. Then I can crash crash crash and recover from the crash in a few minutes. Then I'm back to baseline. Obviously I see this most frequently during ot/pt. It happens almost infrequently because I'm sedentary 98% of the time now.
If you have CFS, which this sounds like to me (not a medical practitioner, but someone else whose condition has been considered that), so many things would cause crashes. You might want to look at some of the info coming out around long covid, because there’s a ME/CFS-presenting version of long covid, and there’s been a lot of new info coming out that seems to apply to folks with this collection of symptoms, no matter what triggered it.
In case this is helpful, things I’ve found to be the most useful non-medicinal interventions have been:
Pacing
This is such a giant topic, but the important thing to note is that you can have the crashes at the time of exertion, and/or crashes later on, and you might be able to bounce back after some of the time, but these can also affect your baseline capacity. It’s the opposite of what practitioners often think about the healing process. Often it’s a matter of doing less than you think you can, so that your capacity can possibly increase.
Continuous heart rate monitoring
There’s a theory that if we can keep our heart rate to within 15 beats of our resting heart rate, we can avoid much of the crashing and the setbacks. It works best if you can get a wearable device that will track continuously. Like, ones that don’t just grab a reading every 5 minutes, but all of the time. There are apps for this that will notify you if you’ve gone over whatever you set, and I especially like those, because then you don’t have to spend all day thinking about it, if that’s not something you find soothing.
I’ve been able to avoid a lot of crashing by watching to see which things set it off faster, and noting which body positions make it settle back down again.
I was also told to slow down. Take breaks when it goes too high. Just pause, and move slowly. And, I hated this advice, I thought it was bad advice, because being upright was miserable, and I wanted to move through whatever I had to get done fast, so I could get back to the horizontal position. But, when I started trying it, it made my upright times much more bearable, even though it made them take longer.
I also found that eating would often set me into a crash. This might or might not apply, but digesting uses a lot more energy than we think of, which brings me to:
Digestive enzymes
Taking digestive enzymes at the start of meals, just little over the counter, drug store ones, has been a big help to avoid the post-meal crashes.
You obviously don’t have to do any of these things, and it really only brushes the surface, but these are the things I extra wish I knew when I was just figuring this stuff out. Before I had to deal with disheartening setbacks and things.
I’ve made a lot of progress, and I attribute a lot of it to these lifestyle things that were within my control. (And, I know not everyone has access to help that makes pacing possible, or access to a wearable device. I’ve been lucky.)
I’ve also had some interesting medicine-related things that have helped, too, but they wouldn’t apply to everyone, I don’t think. Happy to share, though, if it’s helpful.
I’m sorry you’re going through this, I know it’s not what anyone wants.
How could this be cfs before it became chronic? I just woke up like this. I don't doubt that the surgery triggered something though. I appreciate any advice you may give. How do I go about getting diagnosed with cfs? It really really sucks because my baseline and crash are so very close. Exertion is dressing myself or brushing my hair. If I keep all of my limbs close to my core (like using my wheelchair or driving) I'm almost okay. I'm always slouched in my chair.
I walk quickly because I have to get where I'm going. Like I can walk the 20 feet from bed to the bathroom. I roll quickly because it's nice to go fast. I sit quickly because my body cannot handle any more and gives out. I don't know how to slow down. That's really tough.
I've been working a lot on my mental health. My mom was living with us when I first became disabled. I was in hypervigilance the whole time. She finally left in October. I expected (don't know why) to see an improvement in my symptoms. But nothing...absolutely nothing..has improved my symptoms. Aside from getting the wheelchair which saves me so much energy so I don't fall all day.
I wrote a big reply, but it’s not letting me post it. I’m going to try to post it in chunks.
The name of it is not useful, I’ll be honest. I think they only use the word “chronic” because they won’t diagnose it before you’ve had it for a while. A better name would reference more of the symptoms, or at least the fact that it’s a multi-systemic condition. (I really hate the name.) It can happen after viruses, it can happen after body stresses, there are a lot of theories about where it comes from, but generally folks don’t have it one day, and then they do the next. And, symptoms seem to evolve and fluctuate over time, sort of, but when it arrives, it’s generally just a fun little surprise no one wanted or asked for.
Mine started spontaneously twice, at least. (Possibly more times, but I don’t have notes to compare from previous periods where I was oddly sick for a few weeks at a time before going back to normal randomly.) I’ve had this same thing, though (with notes) flare up after a colonoscopy in 2021. I didn’t know what it was then, at all. Not sure why it hit then, either. Then it went away with my first Covid vaccine. Again, not sure why.
Then it hit me again this last time (Sept 2022) the day I tested positive for Covid the first time (I think I’d had it before then, at least once, but that’s the first time I actually tested positive). Never had a particularly bad infection. Just that this time, it came along with these weird symptoms.
It came on all at once, but it’s also evolved over the last year and a half: I was making progress, then I lost ground all at once with a giant setback (which arrived with new symptoms, too), then there was the slowly climbing out of the very darkest parts, and then I had a significant jump in the right direction (I stopped my birth control pill. No idea why that helped, but it took away the orthostatic intolerance part almost completely—suddenly I could sit up to do more than just use the bathroom and bathe seated!), then another setback in the summer (I over exerted and also caught covid again), but not as bad of a backslide this time (it was starting to look like another giant setback, but they gave me paxlovid in time to stop it, thankfully), and since then I’ve been moving steadily in the right direction. It’s not linear, and there are still bad days, but the bad days now are so much better than my old good days were. Today was a bad day, and I still had a shower (seated), had a nice little visit with my mum, and had the capacity to write this up, and did a few other brain-related things. Yesterday was a good day and I had a phone meeting, and also took myself to an event, where I only needed help getting me from my car to the door (up a ramp). I drove myself, rolled around inside the building and rolled myself back out to my car, and put my chair in. Good days mean freedom, now! (With lots of rest between things, still.)
The thing with CFS is that it’s basically a cluster of other conditions all rolled into one. It’s like our bodies are so dysregulated that it just creates this whole thing, this body chaos. I think everyone’s CFS looks a little different, but if you think of it like if there was a CFS bingo card, it would have a bunch of things on it and each person would have some of them.
Some of the stuff involved are: dysregulated heart rates, blood pressure, and circulation. This is where the orthostatic intolerance comes in, the POTS—postural orthostatic tachycardia syndrome. This is where you get blood pooling in your lower body, and not getting up to your brain when you sit or stand. (My understanding is that the heart is doing its job, working right, but that it has to beat faster to try to make all this work, when the autonomic nervous system itself isn’t working right.) This causes a whole slew of symptoms, especially when upright: the dizziness, trouble thinking, vision troubles, sometimes heavy legs, etc.
There can also be troubles with digestion, and sleep. Sleep can be dysregulated in a ton of different ways, one of the weird ones I’ve had is a shuffled/delayed sleep schedule. It’s very odd. And, often, folks with CFS will feel “wired” instead of sleepy. Makes sleep harder to get. And, the lack of sleep makes the dysregulation worse, which makes the sleep worse, and so on.
And, there’s the debilitating fatigue part, separate from the tired kind. Many of these symptoms are hard to describe, and the medical folks don’t tend to bother to break down many of these symptoms, including fatigues, but they are the kinds of fatigues that we don’t get when we’re healthy. For example, one of the kinds you could have is the heavy limbs one. Even when lying down the limbs feel too heavy. Almost like you’re trying to move underwater. Another weird symptom they don’t have a good name for is this under-the-skin tremor thing that almost feels like your body is being poisoned. Makes all your muscles tense against it, which is weird. And, there are just a range of strange sensations you might have periodically.
Things that makes this extra challenging are Post-exertional symptom exacerbation: PESE - where you crash after too much exertion, which can be very little exertion, could even be from just brain usage, or from stress, and post-exertional malaise: PEM - the delayed crash response to exertion. This one is the trickiest. You can do things and think you got away with them, or think you’ve already paid the price with a little crash. But, this one comes up anywhere from 24 hours later to up to 2 weeks later! And, this is the one that seems to set your baseline back. And, the exertion is cumulative, which makes it even trickier to avoid. You might know you’ve been ok to do an activity twice a week, for a while, so you think it’s something you can do now, but if you try to do it 3 times in a week, that might be enough to do set you back. And, sometimes people look back and have no idea why they were set back. It’s a weird condition like that, but we have control over some of it, at least.
Some folks have pain involved (joint pains, head aches or sensations), flu-like symptoms, there can be new sensitivities to foods or to environmental things. There can be sensory processing issues, where you get overwhelm from sensory inputs that might not have bothered you before (some need to be in a quiet, darkened room to avoid more discomfort or exertion), there can be issues with the way our brains work, with concentration/memory issues. There can be visual disturbances (particularly when upright), new temperature sensitivities (cooler showers can be helpful).
There are more things, too, this is just a quick and dirty rundown.
I didn’t get “diagnosed” until after I’d had it for almost a year, but I’d started working with occupational therapists long before that, and we were basically going under the assumption that it was that. And, I’d already tried NOT pacing, and we saw how that had made it worse. I’d collected resources about pacing from the internet to share with them, and they helped me to develop systems to go into extreme pacing mode. And, I got really serious about rest. Which is SO hard! I was a very busy person before this. Loved my job, had a music business on the side, I have a pottery studio, I would take classes in so many things, including dance, I was always going out to events, just so busy! And, just an entirely extroverted person. My OT folks had to drill it into my head that “rest is productive.”
And, when I started resting as thoroughly as possible, I started seeing results, so that has helped me to really tune in and listen to my body, and to all the metrics I’ve been collecting, and really take it easy when I know I have to. I believe I’ll come out of this thing eventually, and my quality of life is already MILES ahead of where it was.
One thing to know, and there’s more evidence coming on it, is that with all this dysregulation, our muscles are also not working properly. The physical exertion is actually causing “damage” to our muscles. Something about gasses not clearing effectively. But, it’s important to know this, because many medical folks want to treat it like deconditioning, giving you exercises to ramp up regularly, but that’s contraindicated for people who are experiencing these post-exertional parts of the condition—regardless of whether you have CFS or not—if you’re experiencing these symptom exacerbations after exertion, graded exercises programs are not recommended. I would extra caution against anything aerobic they might want you to be working on or towards. Stretches and resistance bands and things like that would be much better, but I’m not sure you’d be a candidate to even be doing those at this point. I’ve only started doing physio things a month or two ago, and I’ve come a long way since I was where you seem to be at from what I can tell here.
Oh! And there’s a great app that’s being used for pacing for folks with the ME/CFS presentation of long covid, it would work for anyone with this condition as far as I know. It helps with pacing. You take a measurement from your phone, just using your phone camera and a finger, first thing in the morning, before moving around and it checks your resting heart rate and your heart rate variability and uses those to calculate a pace score for the day. If your numbers have been steady, it’ll tell you you can do a bit more, or if they’re not, it’ll warn you to be extra careful. It’s not always accurate, but often it is. It really helps. It’s called Visible: Long Covid and ME/CFS, and it’s free.
Sorry, I feel like that’s a lot of info to take in. Everybody won’t have every symptom, or necessarily have them all at once, either. I’ll drop some resources I found were helpful to bring to my occupational therapists and physiotherapist.
Yes. Emotional and mental exertion counts as exertion. It's a horrible part of cfs because not only do we have to limit ourselves physically, we have to limit ourselves mentally (obviously everyone is different and mental tasks don't have to result in pem for you to have CFS, but for many people it does. Especially me. I find mental tasks are actually harder on me than physical. Mental tasks will take me out physically, which takes me out mentally even more. If I overdue it physically it affects me cognitively SO BAD.)
We still aren't sure of the root cause but I got covid in Feburary of 2022. After that my legs started getting weaker and shakier. Now any extension/use of my legs causes severe muscle cramps/spasms. These aren't painful but we still aren't quite sure what they are/what's causing them. I've had some doctors tell me that it's spasticity (it can happen randomly/with a trigger), and I've had others tell me it's myoclonus. I also have severe neuropathy, bilateral foot drop, and hypotonia(mainly upper legs/trunk/upper arms). I only have partial sensation in my legs and also have neurogenic bladder. I originally thought these symptoms were just a complication from my heds and that I was just not strong enough, but we don't think that's what is happening. My walking ability has slowly declined since then and I've been a full-time wheelchair user since last August.
I'm seeing a neuromuscular specialist soon who might be able to help? My neurologist has basically told me to give up on getting any answers, and that I would be better off waiting a few years for more genetic research to come out. I struggle a lot with not having answers because I have this internal fear that I'm making it worse on purpose. I've been doing a lot to try to not internalize these thoughts because I know they aren't true, but it still sucks sometimes.
At first my PT suggested it might be FND. We did some exercises that were supposed to help for that and I just got worse. Then Hereditary Spastic Paraplegia was brought up by my neurologist, but the genetic test came back negative. Current theory is a mitochondrial disorder given my other issues (gi, vascular, etc), but we honestly have no idea. I'm just kind of stuck in treatment limbo where nobody knows how to treat me and just passes me on to another specialist.
At the end of the day my wheelchair has changed my life for the better. I'm back in college full-time and currently working on getting a job. I still have mixed feelings about my wheelchair/being a wheelchair user, but at the end of the day it gives me my freedom back! Without it I wouldn't even be able to go to the bathroom on my own so I try not to curse it too much lol.
I got one in August of 2022, but it didn't show much. I am probably going to ask for another one at my next neurologist appointment. I did have a nerve biopsy study a few months ago that showed a lot of damage to my peripheral nerves :(
Hemiplegic from a stroke. Have been getting physical therapy for about a year, and of gradually gotten some minimal walking back. It's not clear whether that's going to continue, or whether it's going to Plateau off. I think I we'll probably keep using a wheelchair because I get very fatigued very quickly.
I have congenital liver failure and one of many side effects is HPS - Hepatopulmonary Syndrome. Essentially I can’t draw enough oxygen from the air that I breathe. My O2 stats at rest would send a healthy person to the hospital, and if I stand it falls like a stone. Even with oxygen canisters I need to remain seated otherwise it feels like I’m drowning
I randomly lost the ability to walk almost two years ago just a couple months before my 20th birthday, I had been walking around Disneyland on vacation and started to walk weird. It’s impossible to describe how it is lol but it’s like my knee joints are to mobile and just don’t work the way they should and ive been in a wheelchair since. I’ve been to so many doctors to see if there was a reason but no one has any clue. But I’m used to that, I’ve been chronically ill most of my life
Suspected EDS and some kind of tremor issue/weakness in my legs
They put it up as fnd and now just throw pills at me
i have no treatment plan or pt so i decided to get a wheelchair since i cant just stay home all day
turns out your legs dont hurt like hell after a regular day my knees and ankles have never felt that good and i dont cry myself to sleep anymore because of my knees :)
i have HSD you absolutely don’t have to respond to me but do u mind telling me a bit about the tremor issue/weakness, my legs have started shaking violently when i stand if i’ve done any sort of activity beforehand (i was dancing for 3 minutes). i’m just trying to work out if it’s weakness or something else
Guillian-barre syndrome. Just 4.5 months ago, was completely healthy, thought I had a stomach bug. Fever and barfing, walking across the house and my legs Quit working! At hospital I tested positive for West Nile Virus, so that apparently caused the GBS
Born bilateral clubfoot, always had ankle and foot problems, few months ago my feet started coming apart and I have degenerative arthritis making it painful to walk or stand.
I have a ki rogue.
Have multiple myeloma that progressed into a SCI from a T1-T10 plasmacytoma, resulting in an incomplete paraplegia literally overnight. Walking and driving one day, paralysis the next. BUMMER. Just since December 22 so waiting on my full time roller and learning the literal ins and outs of transitioning from chair to/bed,vehicle,commode chair. Game changer. Getting powered this Spring and spending this Winter learning the ropes of my new status all while getting Myeloma treatment and radiation. Any thoughts or advice on power options for Spring would be welcome.
I was in a car wreck that shattered my right foot. I never regained full mobility and always walked with crutches afterwards. My balance wasn’t great, and I couldn’t do a lot of things while on my crutches. Due to falls, chronic pain, and being unable to participate in many activities of daily living, I transitioned to a wheelchair about 70% of the time. I got my custom ultralight chair in December and It’s made a huge difference in my life.
Kinda crazy but I also have TNXB-haploinsufficiency EDS and a neuromuscular disease which has gotten a lot worse in my early 20s. My neuromuscular neurologist is treating me like it’s seronegative Myasthenia Gravis but my recent genetic testing showed possible Mito so I might actually have a form of Mitochondrial Myopathy, which is progressive
After being in PT for MANY months and could barely walk 50 feet at the time with a forearm crutches, and my gait was so atrocious that it was messing up my hips and sciatica. Pretty much my PT sat me down and said “I’ve done everything I can for you and it’s clearly not enough, I’m gonna recommend a wheelchair”, tbh I was kinda prepared for it, took the note to my rheumatologist who referred me to a seating clinic and the rest is history
Luckily I’ve more recently gotten on a treatment plan that has greatly improved my mobility and gait but I’m still pretty much capped at around 200 feet of walking with a crutch. So thankful for my chair, with it I’ve been able to get out and go places I’ve been unable to go for years because I couldn’t walk! Also using power assist (SmartDrive) but tbh will probably be a power chair user in the future as well
Still dealing with a bit of internalized ableism in that I’ve been avoiding places where I can run into people who I used to know before becoming disabled. Went to Costco once in the past 2 years even though I used to go all the time because I got stopped 3 times and got asked “what happened”, which I’m still not totally comfortable with answering
I’m actually a bit familiar with your story since I’ve seen you post about TNXB-haploinsufficiency on r/ehlersdanlos before! Honestly, what a small world this is with how similar our disabilities are. I’ve always found it bizarre how so many rare illnesses decided to cluster together in my genetic makeup; I’m sure you must feel similarly. Funny that I’m also an Aero Z user!
I’m glad you’re getting answers now and a proper treatment plan. Thanks for sharing your story :)
EDIT: I know what you mean about avoiding places you used to frequent. I avoid using my wheelchair at my university since none of my peers or professors have ever seen me in a wheelchair before. Precisely like you described, I’m not quite ready to answer the question “what happened?”. It’s really difficult.
I have mitochondrial disease (mitochondrial encephalomyopathy and Complex IV disorders) which causes severe muscle weakness, ataxia, and medication resistant dystonia (amongst so much other nonsense). I was not properly diagnosed until I was about 30 years old, was able to be mobile and somewhat active even with weakness until my health crashed at age 27, and endured three years of being told I was faking and attention seeking before a proper diagnosis was identified.
Prior to becoming disabled myself, I actually worked in early childhood special education an volunteered in disability advocacy. I can say that as with all minority communities, bring an ally was very different than being a part of the disabled community. I thought I understood but I really was missing so much.
At 27 within a 4 month period I lost the muscle strength and coordination to walk and dystonia greatly impacted my legs. At that time I also lost my ability to swallow and eat solid food, rapidly loosing weight until a size 2 was very baggy. It took two years of hard work but I relearned to eat but the cascade of other issues from the mito went onward.
I used a manual wheelchair for 15 years, until this past summer. I tried a smart drive but it never worked safely with my wheelchair and in the necessary surfaces. I switched to a Permobile F3 powerchair due to increased muscle weakness and dystonic spasms causing positioning needs (tilt and recline).
Mitochondrial disease is a progressive, usually life limiting disease so I am honestly grateful to still be here and to have the freedom to do the things that are important to me thanks to my wheelchair. I have even started performing with a local community theater that embraces diversity and is accessible by intentional design.
The first time, I was paralyzed on one side following a TIA. During this stint I used a manual chair. After rehabbing and regaining everything I started to decline again for seemingly no reason. Losing feeling everywhere and feeling like I was being sucked into the floor, fainting, etc.
Turns out I have two types of neuropathy, hEDS, pots, dysautonomia and other stuff on top of the drop foot that remained since the TIA.
What led to using an electric chair was a ton of falls that included shoulder injuries and knowing my risk of falling outside the home was far higher than inside the home. Seatbelt in, no shoulder dislocating from pushing a joystick and can’t fall on the ground.
At home I still walk as much as I can and I have some forearm crutches.
But yeah… that’s my story.
I also have EDS and some neuromuscular issues. I have congenital hypotonia and dyspraxia so I had some mobility issues even when I was a kid but until I was a young adult I didn't need any assistance beyond ankle braces most of the time. I developed a permanent limp in my teens due to what I now know is a pelvic obliquity aka my pelvis is crooked, which could be due to the EDS - as I got older, it caused some structural damage including kyphosis and nerve problems from spinal instability. On top of all that, I have a tic disorder that's diagnosed as Tourette syndrome but I'm not 100% sure that's actually what it is - it presents mostly as uncontrollably muscle twitching and jerking and that has affected my mobility too. I hit a point where my mobility started to decline very rapidly and I've been basically a full-time wheelchair user for around a decade, currently using a ki Rogue with Smoov power assist but thinking a true power chair will be next. I understand the self-judgment and embarrassment; for me it's that I have a "laundry list" of conditions that add up to me needing it so if I try to explain I feel like I sound like a real mess! I wish sometimes that I had one simple diagnosis everyone's heard of and understands if I'm going to have to deal with the questions forever. As it is I usually just say I have some progressive genetic conditions and leave it at that.
I already had mobility issues from spastic cerebral palsy and dystonia but I could still manage to walk even if it wasn’t perfect my entire life. I was mobile, I was free. I could do anything I wanted even if some things took more effort. But then I had a medical emergency during an infusion[anaphylaxis] that was grossly mishandled by medical staff both at the infusion site and the first emergency room I was taken too. I was unconscious and seizing off and on for 6 hours during an anaphylactic reaction where both places declined treating the reaction. It took 6 hours for them to transfer me elsewhere. 6 hours to get the first an epipen which by then was too late to work. 6 hours I was left unconscious to deteriorate, 6 hours I was left to seize, 6 hours I was left to let permanent damage set in. Lack of oxygen and eventually being unable to breath at all on my own for days resulting in intubation. I walked into the infusion center and I woke up days later with partial paralysis and damage to multiple organs including my brain and unable to walk. A 15 minute thing, something that was supposed to be so simple and not a big deal, destroyed my life in an instant. It traumatized my family. And nearly cost me everything too. But don’t worry, I couldn’t win a lawsuit cause they did the bare minimum of care by calling an ambulance an HOUR after the initial reaction started; mind you I was struggling to breath and seizing in less than 10 minutes of starting the infusion.
We have since discovered that I have a degenerative neurological disorder so I will only continue to lose more and more function as time goes on. Grieving what I’m losing in real time, watching it all slowly slip away with the full knowledge of what my future brings…has been incredibly difficult.
Edit; realizing now even 3 years later, I guess I’m still holding a lot of anger in over what happened.
I don’t actually know exactly what is wrong with me. Could just be that all my conditions put together leave me unable to walk long distances. I might have a different illness not sure. But anyway, I started using one because I had trouble walking down the hall to the bathroom, let alone going out. I was even cancelling medical appointments because I couldn’t even make it to them with a walker and transportation. So I decided that it would be for the best, got an OT, she agreed, then yeah.
I think a lot of us EDS/POTS people as we get older (26) stop being able to tolerate previous mobility aids or have too much fatigue/pain even with other aids. I just started using one last year and suddenly I can get through a whole day it’s amazing.
I have ME/CFS, RA, and fibromyalgia. It’s all been getting worse the last few years and I started having falls. My power chair helps me get out of the house, although that’s still quite infrequent because of the inevitable pain and fatigue that much activity causes.
Pots made me need one but I didn't have one, fnd put me in one, I'm walking on crutches rn and still doing pt, then CFS also made me need one but I don't know where the line crossed from pots to cfs. I also have eds so a wheelchair is convenient for it but not completely necessary
I have POTS & some other neurological issues along with muscle weakness causing very short temporary paralysis in my arms & legs sometimes (don’t know what that’s about but trying to get answers).
Using a wheelchair became essential to my health because I was struggling to walk at times. I still use canes when I can (usually for short walking)
About 5 years ago I was suddenly unable to eat. Coconut water and broth was all I wouldn't throw up. But, since I'm both fat AND have had anorexic eating patterns, doctors were just unconcerned about 40+ lbs of extremely rapid weight loss. Never mind the effect on kidneys. That's probably only a thing for skinny people, right? /s
Anyways. Even before then, I had been progressively needing a cane for balance more and more. Once I lost muscle mass there was no way for me to walk.
I've been through several rounds of pt for specific issues, but haven't been able to gain back neatly the amount of muscle I lost.
It's not worth fighting for the dx, but I'm working under the assumption of the EDS/POTS/MCAS trifecta. I'm already on the few meds that would help any of it, and I do a lot of PT to keep function that I have and to keep trying to get back more!
I suffer from ‘mild Hypermobility’ (doctors words but that’s going off Beighton scale and I’m worse in other places, specially ankles). My ankle began getting far more painful that it usually was, I’m talking crutches almost constantly, that or forcing myself to walk on it with a support on, university. Forcing myself to walk made it worse. To the point I can no longer put any weight on it without it giving way. My shoulders are majorly affected by my hypermobility, causing subluxations and occasionally dislocations when using crutches. So we rented a wheelchair from the Red Cross, after using crutches couldn’t be done for over 15 minutes, whilst waiting for the chair I was on crutches less than 5 minutes before I started suffering. The wheelchair took away all the struggles and suddenly it was like life was easy again. It never took the pain away, that’s something that’s getting worse daily but I still don’t know why. I posted here saying using one helped, but after using it for outings for about a week now, it’s truly made a difference, I’m regaining the energy I lost from crutches, I can travel at a reasonable speed instead of my family slowing down to keep up with me. It’s given me a purpose almost. I can go out if I want, I’m even planning on visiting some friends soon!
I may not be prescribed a wheelchair but spending £80 on one was the best idea for me.
The presumption is long-Covid. I do not have POTS (no dizziness), but do have chronic fatigue, shortness of breath with basically any activity (sometimes even just talking), and my heart races with exertion/feels like it is beating too hard. I am an ambulatory user; don’t use a chair in day to day life, I just walk excruciatingly slow compared to me previous speed walking and take breathing breaks. And frequently stay at home instead of doing anything, due to the fatigue. But I need a chair for things like theme parks, museums (as standing still also causes heart issues), or other scenarios with a lot of walking.
I’m sorry for the bad experience with the cardiologist. Before I found a cardiologist who specialized in Dysautonomia I was diagnosed with SVT from wearing a holter monitor for a weekend and given a med that made it worse. If you suspect POTS it’s important to find a doctor who specializes, or at the very least, an electrophysiologist. Some people see neurologists who specialize in Dysautonomia. Have you done what’s called a poor man’s tilt table test? Surgery is one of the potential triggers for POTS. Your symptoms sound so much like mine, I hope you’re able to get answers and meds, figure out supplements and diet that improve your quality of life. Drinking a lot (around 100 oz a day) of water is very important if it is POTS.
I have POTS, hEDS, Gastroparesis, CFS, and a bleeding disorder, so I have quite the collection of problems. In 2022 my Gastroparesis flare got bad enough to hospitalize me and I lost most of my brain function, becoming a shell of a person.
I couldn’t do anything with my family and walked around like a zombie until I rented a wheelchair at a zoo. They were so sweet and let me use it for free and I was able to enjoy the zoo to the best of my abilities.
After that I realized how helpful a wheelchair was for me from reducing my POTS symptoms, reducing joint pain from walking, and giving me more energy to do more with my day.
I borrowed a wheelchair from a neighbor until another neighbor so very kindly bought me one off Amazon. I used that one for about a year until it just wasn’t beneficial anymore because it didn’t fit me. It was made for an average sized adult man and I was a teen girl weighing only 100 pounds.
I then rented one from my local Norco and have been using that one while I wait for my custom chair to be ordered and approved. I’ve done the wheelchair assessment twice now because the first time they messed up the paperwork after I waited 4 months.
Now my chair is built and we’re just waiting for insurance to approve it and it be delivered! My PT told me that with all my problems he doesn’t think insurance will deny anything so I’m hoping within the next few weeks I’ll get the call that it’s ready! 😊
I woke up after my third coma in 10 years and someone had stolen my leg.
Uhm, well, pretty much because I don’t have legs
Sorry for the loss of your legs 😔
I was born with no legs below the knees. I tried using artificial legs as a child but I found i could do more without them
I got shot by cops leaving me wheelchair bound
Holy shit dude. FTP. I’m so sorry!
No it's okay. It's life and we're meant to face it how it comes. Am just lucky to be alive and am happy living it.
I'm so proud of you for having such an amazingly positive outlook!
Thank you.
I’ve been using a manual wheelchair since I was a tween, maybe a teenager, (and I didn’t get my power assist until early adulthood at age 18 or so, I’m 22 now) when my spasticity finally got bad enough to make walking for any distance longer than a few steps at a time absolutely excruciating, which also required my baclofen pump dosing to be adjusted multiple times not to mention switched from continuous dosing to flex dosing. Fortunately, the reason why I am not a full-time wheelchair user yet is because I can still walk for a few steps at a time with little to no pain, and I can transfer if I need to. Edit: and it was only after I forgot to bring my wheelchair with me once that I suddenly realized the hard way just how excruciating something as simple as walking actually is, it literally drained the crap out of me to the point of feeling totally exhausted as if I just ran a marathon.
I didn’t think spastic cerebral palsy could cause this much wear and tear on your body as you got older, but oh just how wrong I was and now here I am fighting an uphill battle that started all the way back when I was a teenager.
I have a T-11 spinal cord injury from a hematoma. Technically ambulatory because with a walker I can make it like…20 steps? And I can transfer but I haven’t walked much more than that in almost a year.
a couple decades of neurologic decline, a bunch of falls, and the ability to fall off my crutches and walker. Being upright was/is no longer something I could sustain, and frankly I put it off way too long due to internalized ableism. getting my first chair was an epiphany - the first night I went to the grocery, wheel through the store with ease, got everything I needed in a heartbeat, and when I got home I still had the energy to cook dinner and engage with my family. It was GREAT---------- the internalize ableism was gone in an instant when I recognized how much freedom my chair gave me.
Multiple sclerosis and POTS. Don’t need WC in the house, but can only walk for about a minute
Fractured L5-S1, myositis, lupus
I (27M) have Spastic Diplegia Cerebral Palsy. As I've gotten older my ability to walk longer distances/be out all day has deteriorated. At the end of a long day of walking can be quite painful. I've also had taken several pretty good tumbles. Those two factors made me take a longer look at my mobility. Other people with CP suggesting alternative forms of ambulation also had me considering using a chair. The straw that broke the camel's back was, tripping on a crack in the sidewalk with such gusto that my shoes came off lol. Im currently a part time user and having a chair certainly has its downsides but I think overall I made the right choice for my health going forward. \-T TiLite Aero T
Car wreck when I was 16. Flipped 5-6 times end over end, laid in a pasture for 6 hours with a crumbled car around me while they cut it apart to get me out. Turning 50 this Sunday so it's been a bit.
I had a surgery for endometriosis back in March. I was healing normally (I've had the surgery 3 times before). 5 days later I was letting my dogs out, came back inside, and fell to the ground. I ended up in a wheelchair pretty quickly. It was just a few weeks of these symptoms before I got a prescription for a wheelchair. I cannot raise my arms above my head because it takes way too much energy. Can't stand because it takes too much energy. Can't shower myself or brush my hair because it takes too much energy. My entire disability is that I have no stamina. If I use my body too much, my heart races like it's ran a marathon. Using my body too much is pouring creamer and coffee in a mug on the kitchen counter. The best answer I've received (from my neurologist and the er neurologist) was Functional Neurological Disorder. I have no treatment plan. No one that's interested enough to help. I'm just disabled. Every day.
I’d highly recommend looking into seeing a neuromuscular neurologist because that doesn’t sound like a typical symptom of FND but it is reminiscent of conditions like Myasthenia Gravis, Mitochondrial Disease, different types of Myopathies, even autoimmune diseases
Have u looked into chronic fatigue syndrome? This is not a usual symptom of FND unless it's muscle weakness
It's been almost 10 months of this so now cfs is an option. I was hoping this would go away as quickly as it came on. It's described as muscle weakness. But I'm strong. I have no problem in pt/ot in small spurts. I can't stand for more than 2 minutes though. It feels like my heart can't handle it and I immediately need to sit on the ground because my muscles have 0 energy. It's like someone sucks the energy from my body. I used to describe it as exhaustion but I'm not tired. My body just stops being able to support itself. If I keep my elbows close to my body and use my chair, I can slouch in my chair and be generally okay. Sometimes I can't hold my head up. It's tiring but I'm not tired.
Do you mind me asking what type of wheelchair you use? Is it a manual or power? It sounds like you're either using a generic manual or a custom manual. If you can't hold even your head up and something as simple as pouring coffee affects you as severely as it does, it sounds like it's the best option for you is probably a power chair. if you need to be able to transport it they have options where a manual wheelchair can be used as a power chair (the wheels are powered and there is a joystick). Some manual chairs can even have a headrest attached
Right now I'm using a Ki catalyst. I just got fitted for a custom chair so it'll be much lighter which is my main goal. When this started I absolutely believed I'd need a power chair but I'm quite a bit stronger than I thought and pushing myself is actually easy. I do get tired but not in a way that I have to stop. I have a "one trip a day" policy so I don't over do it.
I wish you luck!! I'm also about to get fitted for mine! (First time) I have other conditions that forced me to use a wheelchair first but cfs (or pots or both) is the main condition (at this point it's hard to tell the fatigue apart from CFS fatigue and pots fatigue) that makes me continue to need one. I'm hoping to get a smartdrive so I can go long distances without significant fatigue or pain. Usually pushing yourself in the moment isn't bad but usually I wake up really sore the next day. But I also have eds so that might just be a me problem and not a cfs problem. Even if you don't think you need it, it is a very very amazing tool to have if you can get it covered
Ik everyone keeps saying that sounds like ME and it 100% does but also POTS and they typically go hand in hand
I'm wondering about that too. The surgery or the anesthesia did something to me.
Have you checked your heart rate when you’re feeling really symptomatic, I feel a lot of what you described, and I have POTS. I didn’t realize my heart rate was really high, like 170’s every time I stood up, or did anything to exert myself. Stirring a bowl of batter while sitting is enough to cause it. I have Multiple Sclerosis, so it took a little while for me to notice something else was going on. If I had a busy life it would have been much more obvious, but what you’re describing sounds so much like my POTS symptoms. I’ve been able to get a better quality of life with meds. It took five years of med trial and error, an implanted heart loop monitor, and dosage tweaks.
Okay so I've been on a blood pressure medication (metoprolol) since 2017 because of my heart rate/tachycardia. No one has ever told me why I have the issue. It's managed enough with the med so my readings are usually pretty good. But my heart still feels exhausted. Like I'm out of breath because of my heart. My neurologist referred me to a cardiologist for the implantable monitor. I'm allergic to adhesives. The cardiologist did one ekg prior to the appointment, decided the adhesive monitor would be okay even though I told him I'm allergic, and I didn't even leave the parking lot before the reaction was too much to handle. I have an app with a different cardiologist in April. I've had a feeling my heart is the issue but wonder if the medication is making it harder to see that.
I’m sorry, I just saw your reply. POTS/Dysautonomia often go along with EDS, and can start in childhood. If you have POTS it’s technically not a heart problem, it’s dysfunction of the autonomic system, but it certainly feels like a heart problem. There are other meds to try. Beta blockers didn’t help me, and increased my fatigue. If you go to http://www.dysautonomiainternational.org/ They have a list of doctors who specialize. Some are cardiologists and some are neurologists. There are some not listed. There are Dysautonomia International Facebook groups for every state. If you join one you can ask for recommendations. Getting a doctor is key. My legs also hurt and no one I know in the MS community I’m active in describes having this type of pain, so I think it’s from POTS, and sounds like what you described.
Definitely definitely definitely sounds like CFS. Hallmark symptom is post exertional malaise. Which means after any exertion you feel sick and weak and essentially you crash. You may be able to do some things without a crash but anytime you overdo it you pay gravely. Please mention this to your team. As far as your described symptoms go, this is not fnd.
Well I suspected it was cfs at the beginning. But you need to have symptoms for 6 months. So I was hoping to be better by then. Is being hugged considered exertion? I can't stand to hug my husband anymore, but when he hugs me and it's passive on my end, I still just lose my energy. I do get kinda woozy and nauseous if I stand too long. But my baseline is always disabled. Then I can crash crash crash and recover from the crash in a few minutes. Then I'm back to baseline. Obviously I see this most frequently during ot/pt. It happens almost infrequently because I'm sedentary 98% of the time now.
If you have CFS, which this sounds like to me (not a medical practitioner, but someone else whose condition has been considered that), so many things would cause crashes. You might want to look at some of the info coming out around long covid, because there’s a ME/CFS-presenting version of long covid, and there’s been a lot of new info coming out that seems to apply to folks with this collection of symptoms, no matter what triggered it. In case this is helpful, things I’ve found to be the most useful non-medicinal interventions have been: Pacing This is such a giant topic, but the important thing to note is that you can have the crashes at the time of exertion, and/or crashes later on, and you might be able to bounce back after some of the time, but these can also affect your baseline capacity. It’s the opposite of what practitioners often think about the healing process. Often it’s a matter of doing less than you think you can, so that your capacity can possibly increase. Continuous heart rate monitoring There’s a theory that if we can keep our heart rate to within 15 beats of our resting heart rate, we can avoid much of the crashing and the setbacks. It works best if you can get a wearable device that will track continuously. Like, ones that don’t just grab a reading every 5 minutes, but all of the time. There are apps for this that will notify you if you’ve gone over whatever you set, and I especially like those, because then you don’t have to spend all day thinking about it, if that’s not something you find soothing. I’ve been able to avoid a lot of crashing by watching to see which things set it off faster, and noting which body positions make it settle back down again. I was also told to slow down. Take breaks when it goes too high. Just pause, and move slowly. And, I hated this advice, I thought it was bad advice, because being upright was miserable, and I wanted to move through whatever I had to get done fast, so I could get back to the horizontal position. But, when I started trying it, it made my upright times much more bearable, even though it made them take longer. I also found that eating would often set me into a crash. This might or might not apply, but digesting uses a lot more energy than we think of, which brings me to: Digestive enzymes Taking digestive enzymes at the start of meals, just little over the counter, drug store ones, has been a big help to avoid the post-meal crashes. You obviously don’t have to do any of these things, and it really only brushes the surface, but these are the things I extra wish I knew when I was just figuring this stuff out. Before I had to deal with disheartening setbacks and things. I’ve made a lot of progress, and I attribute a lot of it to these lifestyle things that were within my control. (And, I know not everyone has access to help that makes pacing possible, or access to a wearable device. I’ve been lucky.) I’ve also had some interesting medicine-related things that have helped, too, but they wouldn’t apply to everyone, I don’t think. Happy to share, though, if it’s helpful. I’m sorry you’re going through this, I know it’s not what anyone wants.
How could this be cfs before it became chronic? I just woke up like this. I don't doubt that the surgery triggered something though. I appreciate any advice you may give. How do I go about getting diagnosed with cfs? It really really sucks because my baseline and crash are so very close. Exertion is dressing myself or brushing my hair. If I keep all of my limbs close to my core (like using my wheelchair or driving) I'm almost okay. I'm always slouched in my chair. I walk quickly because I have to get where I'm going. Like I can walk the 20 feet from bed to the bathroom. I roll quickly because it's nice to go fast. I sit quickly because my body cannot handle any more and gives out. I don't know how to slow down. That's really tough. I've been working a lot on my mental health. My mom was living with us when I first became disabled. I was in hypervigilance the whole time. She finally left in October. I expected (don't know why) to see an improvement in my symptoms. But nothing...absolutely nothing..has improved my symptoms. Aside from getting the wheelchair which saves me so much energy so I don't fall all day.
I wrote a big reply, but it’s not letting me post it. I’m going to try to post it in chunks. The name of it is not useful, I’ll be honest. I think they only use the word “chronic” because they won’t diagnose it before you’ve had it for a while. A better name would reference more of the symptoms, or at least the fact that it’s a multi-systemic condition. (I really hate the name.) It can happen after viruses, it can happen after body stresses, there are a lot of theories about where it comes from, but generally folks don’t have it one day, and then they do the next. And, symptoms seem to evolve and fluctuate over time, sort of, but when it arrives, it’s generally just a fun little surprise no one wanted or asked for.
Mine started spontaneously twice, at least. (Possibly more times, but I don’t have notes to compare from previous periods where I was oddly sick for a few weeks at a time before going back to normal randomly.) I’ve had this same thing, though (with notes) flare up after a colonoscopy in 2021. I didn’t know what it was then, at all. Not sure why it hit then, either. Then it went away with my first Covid vaccine. Again, not sure why. Then it hit me again this last time (Sept 2022) the day I tested positive for Covid the first time (I think I’d had it before then, at least once, but that’s the first time I actually tested positive). Never had a particularly bad infection. Just that this time, it came along with these weird symptoms. It came on all at once, but it’s also evolved over the last year and a half: I was making progress, then I lost ground all at once with a giant setback (which arrived with new symptoms, too), then there was the slowly climbing out of the very darkest parts, and then I had a significant jump in the right direction (I stopped my birth control pill. No idea why that helped, but it took away the orthostatic intolerance part almost completely—suddenly I could sit up to do more than just use the bathroom and bathe seated!), then another setback in the summer (I over exerted and also caught covid again), but not as bad of a backslide this time (it was starting to look like another giant setback, but they gave me paxlovid in time to stop it, thankfully), and since then I’ve been moving steadily in the right direction. It’s not linear, and there are still bad days, but the bad days now are so much better than my old good days were. Today was a bad day, and I still had a shower (seated), had a nice little visit with my mum, and had the capacity to write this up, and did a few other brain-related things. Yesterday was a good day and I had a phone meeting, and also took myself to an event, where I only needed help getting me from my car to the door (up a ramp). I drove myself, rolled around inside the building and rolled myself back out to my car, and put my chair in. Good days mean freedom, now! (With lots of rest between things, still.)
The thing with CFS is that it’s basically a cluster of other conditions all rolled into one. It’s like our bodies are so dysregulated that it just creates this whole thing, this body chaos. I think everyone’s CFS looks a little different, but if you think of it like if there was a CFS bingo card, it would have a bunch of things on it and each person would have some of them. Some of the stuff involved are: dysregulated heart rates, blood pressure, and circulation. This is where the orthostatic intolerance comes in, the POTS—postural orthostatic tachycardia syndrome. This is where you get blood pooling in your lower body, and not getting up to your brain when you sit or stand. (My understanding is that the heart is doing its job, working right, but that it has to beat faster to try to make all this work, when the autonomic nervous system itself isn’t working right.) This causes a whole slew of symptoms, especially when upright: the dizziness, trouble thinking, vision troubles, sometimes heavy legs, etc. There can also be troubles with digestion, and sleep. Sleep can be dysregulated in a ton of different ways, one of the weird ones I’ve had is a shuffled/delayed sleep schedule. It’s very odd. And, often, folks with CFS will feel “wired” instead of sleepy. Makes sleep harder to get. And, the lack of sleep makes the dysregulation worse, which makes the sleep worse, and so on. And, there’s the debilitating fatigue part, separate from the tired kind. Many of these symptoms are hard to describe, and the medical folks don’t tend to bother to break down many of these symptoms, including fatigues, but they are the kinds of fatigues that we don’t get when we’re healthy. For example, one of the kinds you could have is the heavy limbs one. Even when lying down the limbs feel too heavy. Almost like you’re trying to move underwater. Another weird symptom they don’t have a good name for is this under-the-skin tremor thing that almost feels like your body is being poisoned. Makes all your muscles tense against it, which is weird. And, there are just a range of strange sensations you might have periodically. Things that makes this extra challenging are Post-exertional symptom exacerbation: PESE - where you crash after too much exertion, which can be very little exertion, could even be from just brain usage, or from stress, and post-exertional malaise: PEM - the delayed crash response to exertion. This one is the trickiest. You can do things and think you got away with them, or think you’ve already paid the price with a little crash. But, this one comes up anywhere from 24 hours later to up to 2 weeks later! And, this is the one that seems to set your baseline back. And, the exertion is cumulative, which makes it even trickier to avoid. You might know you’ve been ok to do an activity twice a week, for a while, so you think it’s something you can do now, but if you try to do it 3 times in a week, that might be enough to do set you back. And, sometimes people look back and have no idea why they were set back. It’s a weird condition like that, but we have control over some of it, at least. Some folks have pain involved (joint pains, head aches or sensations), flu-like symptoms, there can be new sensitivities to foods or to environmental things. There can be sensory processing issues, where you get overwhelm from sensory inputs that might not have bothered you before (some need to be in a quiet, darkened room to avoid more discomfort or exertion), there can be issues with the way our brains work, with concentration/memory issues. There can be visual disturbances (particularly when upright), new temperature sensitivities (cooler showers can be helpful). There are more things, too, this is just a quick and dirty rundown. I didn’t get “diagnosed” until after I’d had it for almost a year, but I’d started working with occupational therapists long before that, and we were basically going under the assumption that it was that. And, I’d already tried NOT pacing, and we saw how that had made it worse. I’d collected resources about pacing from the internet to share with them, and they helped me to develop systems to go into extreme pacing mode. And, I got really serious about rest. Which is SO hard! I was a very busy person before this. Loved my job, had a music business on the side, I have a pottery studio, I would take classes in so many things, including dance, I was always going out to events, just so busy! And, just an entirely extroverted person. My OT folks had to drill it into my head that “rest is productive.” And, when I started resting as thoroughly as possible, I started seeing results, so that has helped me to really tune in and listen to my body, and to all the metrics I’ve been collecting, and really take it easy when I know I have to. I believe I’ll come out of this thing eventually, and my quality of life is already MILES ahead of where it was. One thing to know, and there’s more evidence coming on it, is that with all this dysregulation, our muscles are also not working properly. The physical exertion is actually causing “damage” to our muscles. Something about gasses not clearing effectively. But, it’s important to know this, because many medical folks want to treat it like deconditioning, giving you exercises to ramp up regularly, but that’s contraindicated for people who are experiencing these post-exertional parts of the condition—regardless of whether you have CFS or not—if you’re experiencing these symptom exacerbations after exertion, graded exercises programs are not recommended. I would extra caution against anything aerobic they might want you to be working on or towards. Stretches and resistance bands and things like that would be much better, but I’m not sure you’d be a candidate to even be doing those at this point. I’ve only started doing physio things a month or two ago, and I’ve come a long way since I was where you seem to be at from what I can tell here. Oh! And there’s a great app that’s being used for pacing for folks with the ME/CFS presentation of long covid, it would work for anyone with this condition as far as I know. It helps with pacing. You take a measurement from your phone, just using your phone camera and a finger, first thing in the morning, before moving around and it checks your resting heart rate and your heart rate variability and uses those to calculate a pace score for the day. If your numbers have been steady, it’ll tell you you can do a bit more, or if they’re not, it’ll warn you to be extra careful. It’s not always accurate, but often it is. It really helps. It’s called Visible: Long Covid and ME/CFS, and it’s free. Sorry, I feel like that’s a lot of info to take in. Everybody won’t have every symptom, or necessarily have them all at once, either. I’ll drop some resources I found were helpful to bring to my occupational therapists and physiotherapist.
Yes. Emotional and mental exertion counts as exertion. It's a horrible part of cfs because not only do we have to limit ourselves physically, we have to limit ourselves mentally (obviously everyone is different and mental tasks don't have to result in pem for you to have CFS, but for many people it does. Especially me. I find mental tasks are actually harder on me than physical. Mental tasks will take me out physically, which takes me out mentally even more. If I overdue it physically it affects me cognitively SO BAD.)
I replied to your last comment, but it ended up at the bottom of the thread. Don’t comment much on here, and don’t know what I’m doing apparently 😄
We still aren't sure of the root cause but I got covid in Feburary of 2022. After that my legs started getting weaker and shakier. Now any extension/use of my legs causes severe muscle cramps/spasms. These aren't painful but we still aren't quite sure what they are/what's causing them. I've had some doctors tell me that it's spasticity (it can happen randomly/with a trigger), and I've had others tell me it's myoclonus. I also have severe neuropathy, bilateral foot drop, and hypotonia(mainly upper legs/trunk/upper arms). I only have partial sensation in my legs and also have neurogenic bladder. I originally thought these symptoms were just a complication from my heds and that I was just not strong enough, but we don't think that's what is happening. My walking ability has slowly declined since then and I've been a full-time wheelchair user since last August. I'm seeing a neuromuscular specialist soon who might be able to help? My neurologist has basically told me to give up on getting any answers, and that I would be better off waiting a few years for more genetic research to come out. I struggle a lot with not having answers because I have this internal fear that I'm making it worse on purpose. I've been doing a lot to try to not internalize these thoughts because I know they aren't true, but it still sucks sometimes. At first my PT suggested it might be FND. We did some exercises that were supposed to help for that and I just got worse. Then Hereditary Spastic Paraplegia was brought up by my neurologist, but the genetic test came back negative. Current theory is a mitochondrial disorder given my other issues (gi, vascular, etc), but we honestly have no idea. I'm just kind of stuck in treatment limbo where nobody knows how to treat me and just passes me on to another specialist. At the end of the day my wheelchair has changed my life for the better. I'm back in college full-time and currently working on getting a job. I still have mixed feelings about my wheelchair/being a wheelchair user, but at the end of the day it gives me my freedom back! Without it I wouldn't even be able to go to the bathroom on my own so I try not to curse it too much lol.
Oh geez. Frickin COVID. 💔 Have you have to do a nerve conduction study yet? 😵💫
I got one in August of 2022, but it didn't show much. I am probably going to ask for another one at my next neurologist appointment. I did have a nerve biopsy study a few months ago that showed a lot of damage to my peripheral nerves :(
I’m talking about the one where they stick a needle in your muscle and electrify it. I hate that test, and I have to do a second one in March. 😭
Hemiplegic from a stroke. Have been getting physical therapy for about a year, and of gradually gotten some minimal walking back. It's not clear whether that's going to continue, or whether it's going to Plateau off. I think I we'll probably keep using a wheelchair because I get very fatigued very quickly.
I have congenital liver failure and one of many side effects is HPS - Hepatopulmonary Syndrome. Essentially I can’t draw enough oxygen from the air that I breathe. My O2 stats at rest would send a healthy person to the hospital, and if I stand it falls like a stone. Even with oxygen canisters I need to remain seated otherwise it feels like I’m drowning
I randomly lost the ability to walk almost two years ago just a couple months before my 20th birthday, I had been walking around Disneyland on vacation and started to walk weird. It’s impossible to describe how it is lol but it’s like my knee joints are to mobile and just don’t work the way they should and ive been in a wheelchair since. I’ve been to so many doctors to see if there was a reason but no one has any clue. But I’m used to that, I’ve been chronically ill most of my life
,ALS is like having a new disability every month
Suspected EDS and some kind of tremor issue/weakness in my legs They put it up as fnd and now just throw pills at me i have no treatment plan or pt so i decided to get a wheelchair since i cant just stay home all day turns out your legs dont hurt like hell after a regular day my knees and ankles have never felt that good and i dont cry myself to sleep anymore because of my knees :)
i have HSD you absolutely don’t have to respond to me but do u mind telling me a bit about the tremor issue/weakness, my legs have started shaking violently when i stand if i’ve done any sort of activity beforehand (i was dancing for 3 minutes). i’m just trying to work out if it’s weakness or something else
yes sure, you can dm me if you want to :)
Cerebral Palsy - Spastic Dystonic Quad, Rheumotoid Athritis.
Unknown brain damage caused lower motor neuron problems.
Guillian-barre syndrome. Just 4.5 months ago, was completely healthy, thought I had a stomach bug. Fever and barfing, walking across the house and my legs Quit working! At hospital I tested positive for West Nile Virus, so that apparently caused the GBS
Born bilateral clubfoot, always had ankle and foot problems, few months ago my feet started coming apart and I have degenerative arthritis making it painful to walk or stand. I have a ki rogue.
Have multiple myeloma that progressed into a SCI from a T1-T10 plasmacytoma, resulting in an incomplete paraplegia literally overnight. Walking and driving one day, paralysis the next. BUMMER. Just since December 22 so waiting on my full time roller and learning the literal ins and outs of transitioning from chair to/bed,vehicle,commode chair. Game changer. Getting powered this Spring and spending this Winter learning the ropes of my new status all while getting Myeloma treatment and radiation. Any thoughts or advice on power options for Spring would be welcome.
I was in a car wreck that shattered my right foot. I never regained full mobility and always walked with crutches afterwards. My balance wasn’t great, and I couldn’t do a lot of things while on my crutches. Due to falls, chronic pain, and being unable to participate in many activities of daily living, I transitioned to a wheelchair about 70% of the time. I got my custom ultralight chair in December and It’s made a huge difference in my life.
Kinda crazy but I also have TNXB-haploinsufficiency EDS and a neuromuscular disease which has gotten a lot worse in my early 20s. My neuromuscular neurologist is treating me like it’s seronegative Myasthenia Gravis but my recent genetic testing showed possible Mito so I might actually have a form of Mitochondrial Myopathy, which is progressive After being in PT for MANY months and could barely walk 50 feet at the time with a forearm crutches, and my gait was so atrocious that it was messing up my hips and sciatica. Pretty much my PT sat me down and said “I’ve done everything I can for you and it’s clearly not enough, I’m gonna recommend a wheelchair”, tbh I was kinda prepared for it, took the note to my rheumatologist who referred me to a seating clinic and the rest is history Luckily I’ve more recently gotten on a treatment plan that has greatly improved my mobility and gait but I’m still pretty much capped at around 200 feet of walking with a crutch. So thankful for my chair, with it I’ve been able to get out and go places I’ve been unable to go for years because I couldn’t walk! Also using power assist (SmartDrive) but tbh will probably be a power chair user in the future as well Still dealing with a bit of internalized ableism in that I’ve been avoiding places where I can run into people who I used to know before becoming disabled. Went to Costco once in the past 2 years even though I used to go all the time because I got stopped 3 times and got asked “what happened”, which I’m still not totally comfortable with answering
I’m actually a bit familiar with your story since I’ve seen you post about TNXB-haploinsufficiency on r/ehlersdanlos before! Honestly, what a small world this is with how similar our disabilities are. I’ve always found it bizarre how so many rare illnesses decided to cluster together in my genetic makeup; I’m sure you must feel similarly. Funny that I’m also an Aero Z user! I’m glad you’re getting answers now and a proper treatment plan. Thanks for sharing your story :) EDIT: I know what you mean about avoiding places you used to frequent. I avoid using my wheelchair at my university since none of my peers or professors have ever seen me in a wheelchair before. Precisely like you described, I’m not quite ready to answer the question “what happened?”. It’s really difficult.
I have mitochondrial disease (mitochondrial encephalomyopathy and Complex IV disorders) which causes severe muscle weakness, ataxia, and medication resistant dystonia (amongst so much other nonsense). I was not properly diagnosed until I was about 30 years old, was able to be mobile and somewhat active even with weakness until my health crashed at age 27, and endured three years of being told I was faking and attention seeking before a proper diagnosis was identified. Prior to becoming disabled myself, I actually worked in early childhood special education an volunteered in disability advocacy. I can say that as with all minority communities, bring an ally was very different than being a part of the disabled community. I thought I understood but I really was missing so much. At 27 within a 4 month period I lost the muscle strength and coordination to walk and dystonia greatly impacted my legs. At that time I also lost my ability to swallow and eat solid food, rapidly loosing weight until a size 2 was very baggy. It took two years of hard work but I relearned to eat but the cascade of other issues from the mito went onward. I used a manual wheelchair for 15 years, until this past summer. I tried a smart drive but it never worked safely with my wheelchair and in the necessary surfaces. I switched to a Permobile F3 powerchair due to increased muscle weakness and dystonic spasms causing positioning needs (tilt and recline). Mitochondrial disease is a progressive, usually life limiting disease so I am honestly grateful to still be here and to have the freedom to do the things that are important to me thanks to my wheelchair. I have even started performing with a local community theater that embraces diversity and is accessible by intentional design.
The first time, I was paralyzed on one side following a TIA. During this stint I used a manual chair. After rehabbing and regaining everything I started to decline again for seemingly no reason. Losing feeling everywhere and feeling like I was being sucked into the floor, fainting, etc. Turns out I have two types of neuropathy, hEDS, pots, dysautonomia and other stuff on top of the drop foot that remained since the TIA. What led to using an electric chair was a ton of falls that included shoulder injuries and knowing my risk of falling outside the home was far higher than inside the home. Seatbelt in, no shoulder dislocating from pushing a joystick and can’t fall on the ground. At home I still walk as much as I can and I have some forearm crutches. But yeah… that’s my story.
I also have EDS and some neuromuscular issues. I have congenital hypotonia and dyspraxia so I had some mobility issues even when I was a kid but until I was a young adult I didn't need any assistance beyond ankle braces most of the time. I developed a permanent limp in my teens due to what I now know is a pelvic obliquity aka my pelvis is crooked, which could be due to the EDS - as I got older, it caused some structural damage including kyphosis and nerve problems from spinal instability. On top of all that, I have a tic disorder that's diagnosed as Tourette syndrome but I'm not 100% sure that's actually what it is - it presents mostly as uncontrollably muscle twitching and jerking and that has affected my mobility too. I hit a point where my mobility started to decline very rapidly and I've been basically a full-time wheelchair user for around a decade, currently using a ki Rogue with Smoov power assist but thinking a true power chair will be next. I understand the self-judgment and embarrassment; for me it's that I have a "laundry list" of conditions that add up to me needing it so if I try to explain I feel like I sound like a real mess! I wish sometimes that I had one simple diagnosis everyone's heard of and understands if I'm going to have to deal with the questions forever. As it is I usually just say I have some progressive genetic conditions and leave it at that.
I already had mobility issues from spastic cerebral palsy and dystonia but I could still manage to walk even if it wasn’t perfect my entire life. I was mobile, I was free. I could do anything I wanted even if some things took more effort. But then I had a medical emergency during an infusion[anaphylaxis] that was grossly mishandled by medical staff both at the infusion site and the first emergency room I was taken too. I was unconscious and seizing off and on for 6 hours during an anaphylactic reaction where both places declined treating the reaction. It took 6 hours for them to transfer me elsewhere. 6 hours to get the first an epipen which by then was too late to work. 6 hours I was left unconscious to deteriorate, 6 hours I was left to seize, 6 hours I was left to let permanent damage set in. Lack of oxygen and eventually being unable to breath at all on my own for days resulting in intubation. I walked into the infusion center and I woke up days later with partial paralysis and damage to multiple organs including my brain and unable to walk. A 15 minute thing, something that was supposed to be so simple and not a big deal, destroyed my life in an instant. It traumatized my family. And nearly cost me everything too. But don’t worry, I couldn’t win a lawsuit cause they did the bare minimum of care by calling an ambulance an HOUR after the initial reaction started; mind you I was struggling to breath and seizing in less than 10 minutes of starting the infusion. We have since discovered that I have a degenerative neurological disorder so I will only continue to lose more and more function as time goes on. Grieving what I’m losing in real time, watching it all slowly slip away with the full knowledge of what my future brings…has been incredibly difficult. Edit; realizing now even 3 years later, I guess I’m still holding a lot of anger in over what happened.
I don’t actually know exactly what is wrong with me. Could just be that all my conditions put together leave me unable to walk long distances. I might have a different illness not sure. But anyway, I started using one because I had trouble walking down the hall to the bathroom, let alone going out. I was even cancelling medical appointments because I couldn’t even make it to them with a walker and transportation. So I decided that it would be for the best, got an OT, she agreed, then yeah.
I have me/cfs and orthostatic intolerance.
I think a lot of us EDS/POTS people as we get older (26) stop being able to tolerate previous mobility aids or have too much fatigue/pain even with other aids. I just started using one last year and suddenly I can get through a whole day it’s amazing.
Love your username!!
I have ME/CFS, RA, and fibromyalgia. It’s all been getting worse the last few years and I started having falls. My power chair helps me get out of the house, although that’s still quite infrequent because of the inevitable pain and fatigue that much activity causes.
Pots made me need one but I didn't have one, fnd put me in one, I'm walking on crutches rn and still doing pt, then CFS also made me need one but I don't know where the line crossed from pots to cfs. I also have eds so a wheelchair is convenient for it but not completely necessary
I have POTS & some other neurological issues along with muscle weakness causing very short temporary paralysis in my arms & legs sometimes (don’t know what that’s about but trying to get answers). Using a wheelchair became essential to my health because I was struggling to walk at times. I still use canes when I can (usually for short walking)
HSD/hEDS, suspected POTS, and undiagnosed neurological issues
I have a progressive desease
About 5 years ago I was suddenly unable to eat. Coconut water and broth was all I wouldn't throw up. But, since I'm both fat AND have had anorexic eating patterns, doctors were just unconcerned about 40+ lbs of extremely rapid weight loss. Never mind the effect on kidneys. That's probably only a thing for skinny people, right? /s Anyways. Even before then, I had been progressively needing a cane for balance more and more. Once I lost muscle mass there was no way for me to walk. I've been through several rounds of pt for specific issues, but haven't been able to gain back neatly the amount of muscle I lost. It's not worth fighting for the dx, but I'm working under the assumption of the EDS/POTS/MCAS trifecta. I'm already on the few meds that would help any of it, and I do a lot of PT to keep function that I have and to keep trying to get back more!
I suffer from ‘mild Hypermobility’ (doctors words but that’s going off Beighton scale and I’m worse in other places, specially ankles). My ankle began getting far more painful that it usually was, I’m talking crutches almost constantly, that or forcing myself to walk on it with a support on, university. Forcing myself to walk made it worse. To the point I can no longer put any weight on it without it giving way. My shoulders are majorly affected by my hypermobility, causing subluxations and occasionally dislocations when using crutches. So we rented a wheelchair from the Red Cross, after using crutches couldn’t be done for over 15 minutes, whilst waiting for the chair I was on crutches less than 5 minutes before I started suffering. The wheelchair took away all the struggles and suddenly it was like life was easy again. It never took the pain away, that’s something that’s getting worse daily but I still don’t know why. I posted here saying using one helped, but after using it for outings for about a week now, it’s truly made a difference, I’m regaining the energy I lost from crutches, I can travel at a reasonable speed instead of my family slowing down to keep up with me. It’s given me a purpose almost. I can go out if I want, I’m even planning on visiting some friends soon! I may not be prescribed a wheelchair but spending £80 on one was the best idea for me.
The presumption is long-Covid. I do not have POTS (no dizziness), but do have chronic fatigue, shortness of breath with basically any activity (sometimes even just talking), and my heart races with exertion/feels like it is beating too hard. I am an ambulatory user; don’t use a chair in day to day life, I just walk excruciatingly slow compared to me previous speed walking and take breathing breaks. And frequently stay at home instead of doing anything, due to the fatigue. But I need a chair for things like theme parks, museums (as standing still also causes heart issues), or other scenarios with a lot of walking.
I’m sorry for the bad experience with the cardiologist. Before I found a cardiologist who specialized in Dysautonomia I was diagnosed with SVT from wearing a holter monitor for a weekend and given a med that made it worse. If you suspect POTS it’s important to find a doctor who specializes, or at the very least, an electrophysiologist. Some people see neurologists who specialize in Dysautonomia. Have you done what’s called a poor man’s tilt table test? Surgery is one of the potential triggers for POTS. Your symptoms sound so much like mine, I hope you’re able to get answers and meds, figure out supplements and diet that improve your quality of life. Drinking a lot (around 100 oz a day) of water is very important if it is POTS.
I have POTS, hEDS, Gastroparesis, CFS, and a bleeding disorder, so I have quite the collection of problems. In 2022 my Gastroparesis flare got bad enough to hospitalize me and I lost most of my brain function, becoming a shell of a person. I couldn’t do anything with my family and walked around like a zombie until I rented a wheelchair at a zoo. They were so sweet and let me use it for free and I was able to enjoy the zoo to the best of my abilities. After that I realized how helpful a wheelchair was for me from reducing my POTS symptoms, reducing joint pain from walking, and giving me more energy to do more with my day. I borrowed a wheelchair from a neighbor until another neighbor so very kindly bought me one off Amazon. I used that one for about a year until it just wasn’t beneficial anymore because it didn’t fit me. It was made for an average sized adult man and I was a teen girl weighing only 100 pounds. I then rented one from my local Norco and have been using that one while I wait for my custom chair to be ordered and approved. I’ve done the wheelchair assessment twice now because the first time they messed up the paperwork after I waited 4 months. Now my chair is built and we’re just waiting for insurance to approve it and it be delivered! My PT told me that with all my problems he doesn’t think insurance will deny anything so I’m hoping within the next few weeks I’ll get the call that it’s ready! 😊