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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

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Community Voices

Back into the Unknown

I was diagnosed with fibromyalgia and essential tremors a few years ago. It was such a relief to put a name to the disease, and be able to focus my energy on treating and living with it. Fast forward to the last few months, my tremors have been worsening, and they have affected my writing, typing, and errant mouse clicks ( I'm in IT) even clicking on send to all email to my entire company. Long story short, I'm being sent to a movement disorders clinic for my tremors and to be evaluated for Parkinson's Disease due to other issues lining up with it. I feel like I'm starting over again, and 4months to wait for an appointment is just cruel, but they are supposed to be great, so I'll wait and hope for a cancellation. I need to have a name for my foe. Thank you for letting me vent.

#Fibromyalgia #ParkinsonsDisease #Tremors

3 people are talking about this
Community Voices

Feeling run down

How do you stop worrying about how everything is feeling and focus on your own mental health? I’m not in a good place. I’m constantly worried about every person in my life and feeling like I have to tiptoe around everyone. I can’t just let people feel their feelings because I don’t want them to be upset or sad but yet for some reason it’s ok for me to feel that way constantly. I haven’t been able to go to counseling in almost a month because of life. I have an appt next week but even then I feel like we talk more about how she can relate to me and things her kids have been through. Then I leave there feeling like I didn’t get anywhere. I’m in pain physically constantly and can’t get in to see a dr until November to get shots in my head. Physically and mentally I just feel worn out and don’t want to do it anymore but I keep doing it for my kids. I’m just so tired of everyone’s shit when I can’t even take care of myself. #Depression #ChronicPain #OccipitalNeuralgia #Anxiety #ArnoldChiariMalformation #IntracranialHypertension #Tremors

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Community Voices
Community Voices

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Community Voices

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Community Voices

#Depression as per my past few days

Whats on your mind?

I haven't showered in days. I've been asleep more hours than I've been awake. My sustenance has consisted of gas station snacks and #Anxiety . My words seem like i can't get them out fast enough, as if theres a rushing whirlpool in my mind. My t-shirt has been my tissue as well as my napkin. Something about mercury in retrograde again. I know I'm not hungry so, why did i eat that? I messed up and only shaved half of one leg. My #Tremors are making it hard to hold things, write, type. I'm scared. Always so on edge. I'm afraid one day my med's will stop working and i wont have developed the proper coping techniques to be okay.

Thats whats #onmymind

9 people are talking about this
Community Voices
Community Voices

How to ask about using #MobilityAids ?

I am currently working with an exercise physiologist and I am wanting to ask about #MobilityAids but I'm not sure how to approach it. I really struggle staying upright and standing for a long time because of #PosturalOrthostaticTachycardiaSyndrome and lately I've been having trouble walking, due to #Fatigue and joint and muscle weakness and #Tremors .
I am thinking about maybe using a cane/crutches or even a walker to help me.
I don't know how to bring it up. I feel really nervous talking about it because I feel like I don't really need it because I'm young and not sick enough. My mum keeps telling me to excerise more and I feel really embarrassed that I can't even stand properly.
How should I bring this up with my parents/doctor's?

5 people are talking about this