Join the Conversation on
418 people
0 stories
31 posts
Note: The hashtags you follow are publicly viewable on your profile; you can change this at any time.
Don’t miss what’s new on The Mighty. We have over 20 email newsletters to choose from, from mental health to chronic illness.
Browse and Subscribe
What's New in
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
Community Voices

Hello Everryboddy ! ( I'm saying hello in my best Grover voice. ...a blue fur covered muppet from Sesame Street kid's program. )

<p>Hello Everryboddy ! ( I'm saying hello in my best Grover voice. ...a blue fur covered muppet from Sesame Street kid's program. )</p>
3 people are talking about this
Community Voices

Treating Symptoms and Finding Answers

This is my first post, but I am hoping to get some opinions from people. I have battling chronic illness for years and it has recently gotten bad. I have a lot of blood work/tests that indicates a problem, but is very unspecific. I'm starting a new medication to treat the pain I experience (assuming it works), but I am experiencing some cognitive dissonance about the whole thing. I want the pain to go away, but I desperately want an answer, a reason for the pain. If my pain goes away, I am afraid doctors will stop helping me try to find an answer. Do I NEED an answer? Or do I just want an answer to make myself feel better mentally? If the medication works, should I stop looking for an answer? I don't want the past 5 years to be chalked up to nothing and just be stuck taking random pills. Any thoughts/advice is appreciated.#LymeDisease #ChronicIllness #AutoimmuneDisease #Undiagnosed #Mystery #AbsenceSeizures #Nervedamage

4 people are talking about this
Community Voices

Advice for stopping Savella

Does anyone have any suggestions for how I should go about tapering off of Savella? I tried contacting my doctor but haven’t heard back. I’m having some symptoms that I don’t like and I’m thinking they could be caused from the Savella. I looked online for suggestions and all I could find was that it’s important to taper slowly and not to stop cold-turkey. However I could really use more specific advice for how to taper the dose safely. I’m currently taking the max dose of 200mg/per day (100mg in morning and 100mg at bedtime). If anyone else has had to stop this medication, your input on how you went about it, will be greatly appreciated.
#Fibromyalgia #ME /CFS #Migraine #IBS #ic #Nervedamage #DegenerativeDiscDisease #FoodAllergies #fragranceallergies #KidneyStones #spinalmass #Depression #sensorysensitivities

5 people are talking about this
Community Voices

Medical Marijuana ~ I Never thought I’d Be a 50 Year-Old Stoner. But Here I Am.

<p>Medical Marijuana ~ I Never thought I’d Be a 50 Year-Old Stoner. But Here I Am.</p>
10 people are talking about this
Community Voices


53 people are talking about this
Community Voices
Community Voices

So tired of everything ... no purpose left

I forgot how to spell the city that I was born in. I remember a time that I used to be so smart, usually I’d be the smartest in any room I’d walk into. Not anymore. Even making phone calls are tough because I always lose my focus. Too many concussions, I’m finding that I am getting so emotional. From mad to sad. Angry. I’m convinced I have CTE. The only thing in my “death note” is that I want my brain tested.

So many health problems that I’ve basically given up. How many different doctors and specialists do I have to go to before the frustration of no one being able to help me sets in? I’ve seen them all. Second opinions for most as well.

Exhausted all the time, it’s a struggle to get out of bed. When I “try” to sleep I struggle. Inevitably I crash for an hour or two a couple times a day when I’m not really trying.

I feel so lonely and alone. I cry everyday. I lay in bed waiting to crash and hoping I don’t ever wake up. I haven’t seen my friends (the two who still pretend to be my friend) in over 2 years now. Covid is a lame excuse at this point.

I take 14 different pills a day and I’m still miserable. Back, neck, knee, and nerve pain shooting down my legs. Frequent headaches. Double vision. Confused often. Depression. Anxiety. Broken.

I often laugh that I’d never kill myself because I’d f- - - it up somehow and just be in even worse shape.

I have a dog that’s 16 years old. I get no joy anymore, and take care of her under obligation. I am kinda expecting that my body will fail once and for all when she’s gone. I won’t have any reason to get out of bed once she passes.

#ChronicPain #TraumaticBrainInjury #TBI #CTE #Neuropathy #Nervedamage #MajorDepressiveDisorder #Anxiety #donefighting #Insomnia

4 people are talking about this
Community Voices

Chronic Pain vs Pain Mangement

I have chronic pain I have Fibro, RA,
ankylosing spondylitis, IC/BPS, sciatica, spinal stenosis, arthritis etc.....

So I am being told by my Pain Dr that I cannot be on pain meds for the rest of my life. Now my pain is chronic as in forever like we know these dx’s are uncureable.
So how can a pain dr take the stance of taking away my pain pills every month ?
She said to me you can’t be on pain meds forever.

You think this is what I wanted to be on a ton of pills a day?
So you’re start weaning me without telling me down. Thing is I foreshadowed this coming so I got my medical marijuana card. In hopes that this can help.

I realized beginning of 2020 she had cut one month by 25 pills without telling me then she started talking to me about cutting more and more and more.
From when we started (year and a half) she already cut me down by by 75 pills and she’s not finished.

I am pisssed as all hell but my husband doesn’t think it’s a big deal. I’m just like if my conditions weren’t chronic and uncureable ok but I’m still gonna be in pain.

4 years ago I had a gastric sleeve so a lot of medicine I was on I was told I could no longer take because stomach. No longer take inflammatories. Now at the time of the surgery I was also on OxyContin for quite a few years by then.

I was told I could no longer be able to take them and was also told by at least 12 dr’s that I would either never be able to get off or it would take years to take me off.

Well we figured out a schedule and I was off them in a month and a half. That’s when they put me on what I am now and she has been trying to crazy weening me every month.

My main concern is I’m 52 I’ve been a warrior now for 20 plus years. It makes me thou really scared to think of what my life is going to be like at 60 or 70. The woman in my family live till late 80’s. Any body else dealing with a similar situation?

#RA #RheumatoidArthritis #Fibro #Fibromyalgia #ic /BPS #InterstitialCystitis #PTSD #sciatica #PituitaryTumors #Nervedamage #AnkylosingSpondylitis #LymeDisease #LymeWarrior #ChronicPain #chronicpainsufferer #DDD #Migraines

26 people are talking about this