mobility

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    Crutches for mibility

    Hi all. As my pain seems to be getting worse, especially in my mid and lower back, I am wondering if any of you have found crutches helpful? I have a walking stick, which I so use but find it causes muscle tension on the side I use it. Not quite ready ro go full time with a wheelchair ( though I do use it on days out etc) thanks all x #Fibromyalgia #degenerative disc disease #mobility

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    Sleep Deprived EEG Tests

    I’m going to be having an eeg test soon for the first time. I just found out its a sleep deprived one.

    Have you had this test and can you tell me your experience with it? I’m wondering why the neurologist ordered this kind (sleep deprived) specifically.

    Did it get you and your doctors closer to proper diagnosis? #EEG #testing #Nerve and joint pain #neurologist #Diagnosis #mobility #Tinnitus #Epilepsy #ChronicPain

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    Making an apartment more accessible?

    I was finally awarded disability and I’m trying to stock up on helpful items. I have hypermobile Ehlers Danlos, POTS, and a few other things that limit my mobility. I have a shower chair and that’s about it. Anything you’ve done that has been helpful for you for mobility?

    #EhlersDanlos #mobility #Accessibility #apartmentliving

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    How much do you push your body when in an effort to fight for mobility you can’t control the nerve pain or the muscle spacticity and spasms?

    I’m living with chronic intense spine pain with nerve damage and muscle atrophy in my lower body. Just a few weeks ago I was in a wheelchair for eleven days straight and could not walk at all. I haven’t been able to do anything besides the bare basics of caring for myself and my pup. Yes, the bare basics. I’m not in a wheelchair right this minute but I cannot walk without my rollator or walker with my attached cane. It’s been that way for a long time now, years.

    Anyway, I’m trying to walk (via walker) and track my steps, push myself a little more each day.

    The pain, burning and numbness take over my body and I have to stop repeatedly to bend my spine forward and relieve the pain and pressure, ease the burning. It’s horrible and the pain sucks but still, I want my life back and I’m not going down without a whole lot more fighting (again). Yes, I’ve been living with chronic pain my entire adult life, so it’s been an ongoing battle for years.

    The problem I’m having right now and daily is: when I’m pushing for mobility and trying to save my lower body (mid spine to feet) from being permanently paralyzed I’m fighting nerve damage that only relieves with ice for hours (mid to low spine and bum and hips) but muscle spasms that only relieve with heat (legs/feet).

    Just exactly how much muscle spasms/spasticity is too much and how do I know if I’m pushing way too much or just not enough? I’m really not knowing and I know if I don’t keep fighting and just stay in whats comfortable and least painful I won’t be out of the wheelchair very long. Any tips, advice? I welcome them all please. This pain is making me a little bit nuts and I’m using ice and heat at the same time to combat the different parts and symptoms on my lower body. I’m exhausted and frustrated to say the least. #ChronicPain #FailedBackSurgery #Nervedamage #DDD #Osteoarthritis #spinestimulator #migratedleadwire #Exercise #Neuropathy #MuscleWasting #Tremors #numb #tingling #Burning #Spasticity #musclespasms #mobility #Fibromyalgia

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    I’m so glad to finally be back after the most #traumatic year!

    I have been a contributor for some time and I can’t believe I’ve only written two articles! I have had #MyalgicEncephalomyelitis for 12 years, I am severely affected - housebound and bed/sofa bound. I developed #Gastroparesis 5 years ago. I used to be a regular figure in the M.E community (you might know me from my books!) but when my husband and I started our own business around 2019 all of my energy was put into that. So much has happened. In April 2021 I was diagnosed with #GeneralizedAnxietyDisorder then two days later my brother broke my heart by walking out of my life, choosing to believe his girlfriend (who has previous!) over his big sister who he always said was his second Mum. This ripped my world apart. The shock… the disbelief.. because as siblings we were so close. I couldn’t have imagined it in a million years. Long story short I fell into a deep depression, for about 3-4 months. Wasn’t working, wasn’t really even living. All of this on top of #SevereME is a hell I wouldn’t wish on anyone. My husband and I lost a lot that year. We are still picking up the pieces. I I have been a contributor for some time and I can’t believe I’ve only written two articles! I have had #MyalgicEncephalomyelitis for 12 years, I am severely affected - housebound and bed/sofa bound. I developed #Gastroparesis 5 years ago. I used to be a regular figure in the M.E community (you might know me from my books!) but when my husband and I started our own business around 2019 all of my energy was put into that. So much has happened. In April 2021 I was diagnosed with #GeneralizedAnxietyDisorder then two days later my brother broke my heart by walking out of my life, choosing to believe his girlfriend (who has previous!) over his big sister who he always said was his second Mum. This ripped my world apart. The shock… the disbelief.. because as siblings we were so close. I couldn’t have imagined it in a million years. Long story short I fell into a deep depression, for about 3-4 months. Wasn’t working, wasn’t really even living. All of this on top of #SevereME is a hell I wouldn’t wish on anyone. My husband and I lost a lot that year. We are still picking up the pieces. I deteriorated significantly with my #CognitiveIssues & #mobility and I won’t lie, I’m a mess. After coming out of a 6 month long #Gastroparesis flare I can now try and get the help I need. Anyways that was a super long essay but I can’t wait to write another article, and having been away from #Spoonie friends for so long, I forget that there are people who care. Sending love and hugs to anyone who needs it right now. Hay xxxxxx

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    Mobilityyyy!

    Anyone got some #Lifehacks for managing loss of mobility? My hand, wrist, and arm function has gotten so much worse the last few years, since I haven’t been able to afford to treat my #AutoimmuneDisease , and it is hard to cope! Folks with minimal hand mobility - how do you manage ADLs and general functioning? My legs and feet are also poor, but I’ve dealt with that a lot longer, and it doesn’t cause as many issues. I’m unable to grip or turn or hold weight, can’t open or close my hands very well, and basically just have little balled fists to work with. I should probably see an occupational therapist but again - American healthcare is too expensive! #AnkylosingSpondylitis #PsoriaticArthritis #mobility

    Photo of my hands in better times, as they started to deteriorate.

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    I don't know how to do this thing called 'self care'

    I am one of those ppl who has to stay busy. My body (and my Drs) for some time now, have been telling me to sit more. Mostly it's to elevate my lower legs due to venous insufficiency and ulcers caused by Sarcoidosis. How do I do this, sit more? What are some things that have helped you transition from mobile to sedentary. How do you divide your time between being up and active with being down and resting? What does your rest 'area' look like? Would love some guideance. #mobility issues,#sedentary ,# Sarcoidosis,#chronic pain,
    #Arthritis ,#Fibromyalgia ,#Chores ,
    #Pain

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    Functional Neurological Disorder (FND)

    I have really been struggling with something called functional neurological disorder (FND) for almost a year now. I get non-epileptic seizures, facial spasms, selective mutism, and occasionally trouble walking and moving my legs. It makes me feel really hopeless 😩 because my doctor said there is nothing she can do about it - she just tells me to manange my stress. This disorder is also know as conversion disorder, which is a very archaeic term from the time of Freud. Back then it was mostly women afflicted by it, and they called it hysteria. Even when I was in the hospital 🏥, they wrote in my chart that I was “faking a seizure”. There is nothing fake about it - it is a very very real and scary experience. Just because there is no “known” physical cause shouldn’t make it any less valid! I also am frustrated by the fact that this disorder is called “functional”. It is anything but. It can be very distressing and incredibly disabling for the individual experiencing it. I am writing ✍️ this post to bring awareness to this issue, and the problem with the medical system where if doctors can’t find a cause of the symptoms, they say it’s all in the person’s head or accuse them of faking. These leads people who are struggling feeling upset and invalidated and leading to a distrust of doctors which could make them less likely to reach out for support in the future. This is highly damaging. Just needed to rant and ask has anyone experienced anything similar with the medical system or symptoms of FND? How do you cope? #FunctionalNeurologicalDisorder #non -epileptic seizures, #Selective mutism #mobility issues #It ’s not all in your head

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    Wobbly legs, need braces!

    Hey everyone!

    I have #Undiagnosed hypermobility (either HSD or hEDS, diagnosis pending) and my limbs like to collapse in on themselves at very inconvenient times. My knees have been particularly bad lately and while I'm usually able to 'catch' myself on my other leg they've taken to collapsing at the same time lately where I have to grab onto supports.

    I'm seeing my doc on Monday to ask for a prescription for knee braces but I was wondering if y'all had any recommendations on type / brand that I can get her to write down? My insurance requires a lot of specificity and she's very good at following my lead but I need to know a few types before I see her to make sure I don't have to go back if it's not the right one for my (admittedly uncertain) diagnosis.

    I'm looking for something with lots of stability for wobbly, hypermobile, weak, and painful knees that isn't too bulky and is ideally under $200 CAD each (bc my insurance works with reimbursements and maxes out at $500/ year).

    If y'all have other recommendations for unreliable and generally annoying knees, especially when it comes to being able to go Christmas shopping and move between floors in my house, I'd love to hear em!

    #Hypermobility #HEDS #Zebra #Braces #mobility #Mobilityaid #knee #Recommendations