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Community Voices

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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Community Voices

What I need to remember when I bow out of summer activities.

<p>What I need to remember when I bow out of summer activities.</p>
3 people are talking about this
Community Voices

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

6 people are talking about this
Community Voices

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

12 people are talking about this
Community Voices

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

<p>I’m so glad to finally be back after the most <a class="tm-topic-link ugc-topic" title="traumatic" href="/topic/traumatic/" data-id="5c2a83fd20014900c96773ad" data-name="traumatic" aria-label="hashtag traumatic">#traumatic</a>  year!</p>
2 people are talking about this
Community Voices


1 person is talking about this
Community Voices

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 ,

3 people are talking about this
Community Voices

Functional Neurological Disorder (FND)

<p>Functional Neurological Disorder (<a href="" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce8100553f33fe99303c" data-name="FND" title="FND" target="_blank">FND</a>)<br></p>
11 people are talking about this
Community Voices

Wobbly legs, need braces!

<p>Wobbly legs, need braces!</p>
Community Voices

Navigation system for handicapped #WheelchairUsers #mobility

Do you know this problem too? I try to find the way or plan a tour on a place I don't know. There are plenty of different navigation systems. But... Non of them has an option for wheelchair user. So... If I go for the settings for pedestrian, it doesn't take long and I have to turn around because of obstacles (stair, too steep, door, too narrow....) but if I choose the one for bikes, then it doesn't take long and I end up on a crossroad without a sidepath or even on a street with speedlimit 80. It is so frustrating having to turn around on and on or even getting stuck sometimes (as too steep to turn around) We have a limit of distance by mobility and pain, but still are the ones not getting support by all these big companies for navigation systems. And it isn't just a problem in my country, it is a global one.

2 people are talking about this