neuropathy

Let's think about accessibility and comfort today.

Spending a lot of time in bed makes your bedroom or other living space a very important place. Making sure those places are comfortable, accessible, and tailored to your specific needs can be a big help in managing symptoms or getting around more effortlessly.

What's one thing you can add to your living space to improve your quality of life? What's something you already have that you would recommend to someone else?

Let us know in the comments below! ⬇️

#ChronicIllness #Disability #ChronicPain #Pain #BackPain #Spoonie #Fibromyalgia #Neuropathy #MyalgicEncephalomyelitis
#Lupus #Cancer #Gastroparesis #MultipleSclerosis #RheumatoidArthritis #InflammatoryBowelDiseaseIBD #ChronicEpsteinBarrVirus #MentalHealth #ChronicDepression #Anxiety #PanicAttacks #InvisibleIllness
#alwaysinbed

Yesterday was a bit cold but beautiful sunshine! Nice day for a walk on the beach. No one in sight, the calm beauty, serenity, the warmth of the sun on my face......what a great way to rejuvenate the mind and soul❤️ #Fibromyalgia , #ChronicPain , #ChronicFatigue , #Anxiety , #Seizures , #Depression , #Migraines , #Neuropathy , #DegenerativeDiscDisease .

I am looking for stories that the white papers don't tell, that stay between you and your doctor and never get reported. Comment of you have been on #Biologics and experienced neurological symptoms especially new chronic life-changing nerve pain.

1. Which biologic?
2. Related to COVID infection or no?
3. Did you stop taking it?
4. Did the side effect symptoms go away, if so?

I read something about the immune system being like a water bed. Nothing ever gets fully blocked, just displaced.

I am on #Stelara 90mg/4wks. I am concerned that my typical gastrointestinal inflammation just got redirected to neurological problems like neuropathy, autonomic dysregulation, weakness, fatigue and dizziness that made my life even harder than the Crohns did. I have been doing a lot of research and am asking my doctor if we can switch me off of it.

I was on Stelara about 8 months til I got COVID and its been downhill ever since. Went from teaching dance classes to walking with a cane in about a year.

Its hard to find this kind of story online. Maybe the comments on this post will help some confused people who are also having the same symptoms with #immunosuppressants -- hope we all feel better soon.

Also, I'm new to this app. Help me find my people! Say hi!

#AutoimmuneDisease #remicade #Humira #cimzia #rinvoq #anythingumab #RheumatoidArthritis #Psoriasis #PsoriaticArthritis #InflammatoryBowelDiseaseIBD #longcovid #ChronicFatigue #Neuropathy

Today I found an earthworm where he shouldn’t be in my garden . So I gently placed him in my hand

But I didn’t feel the familiar coolness of his touch , the slithers of his movement .
Or the slime of his skin

It was hard to understand

How something so familiar , something I’ve experienced my whole life . Something that to be a sensed so strong .
Was all the sudden.
Gone .

My mind flashed back to sterile doctors offices as a child
Reflex hammers to the knee
The baffled looked when my legs didn’t jump , the same result happening when they tried different parts of me

Wheels in the doctors brains spinning in hyper drive as you could see their brain pouring over the possibilities.

Then as I grew , their seemed to be a growing collection of “ things wrong with me “

For years , I’ve been a mystery .

As answers has been slowly appearing .

I’ve sat with doctors as they have tried to help me understand

Why my body works like it does .
Why I “am the way that I am “
But when I didn’t feel that earth worm move in my hand .

The neurologist workups and worries made more sense to me

I’ve always cracked jokes when they have mentioned “ Neuropathy “ .

I didn’t see it as a big issue . Just something small .
Not a sign to a bigger issue .
I mean isn’t it better than more pain to just feel nothing at all?

But when I knew how that worm was suppose to feel .
Then felt nothing at all.
It made my “little worry “ feel less small .

As I put the worm in a different container
Watched him slither away as I set him free .
I couldn’t help but mournfully wonder
What will be the next little thing I’ll loose about me?

#smileon🐷 #spoonie #chronicillnes #chronicpain #neurology #Neuropathy #poetsofig #poetry #spoonie #rareadult #raredisease #themighty #mightytogether #mightypoets #SmallFiberNeuropathy #autoimmunewarrior #epilepsy #undiagnosed

We all have different needs and preferences when it comes to picking the right mattress, especially for those of us who spend a lot of our time in bed. Some of us may prefer firm mattresses, others soft or memory foam, maybe even Tempur-Pedic (or for the real adventurers among us… water!).

What type of mattress do you prefer? I like my mattress more on the firm side with gel infused breathable memory foam.

#ChronicIllness #Disability #ChronicPain #Pain #BackPain #Spoonie #Fibromyalgia #Neuropathy #MyalgicEncephalomyelitis
#Lupus #Cancer #Gastroparesis #MultipleSclerosis #RheumatoidArthritis #IrritableBowelSyndromeIBS #InflammatoryBowelDiseaseIBD #ChronicEpsteinBarrVirus #MentalHealth #ChronicDepression #Anxiety #PanicAttacks #InvisibleIllness #alwaysinbed