neuropathy

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

Brain fog from new supps recommended by the results of the private lab test recently received has me feeling like I’m in a state of arrested development. I can’t easily get out, and I’ve become a pariah to most who know me. I’ve written about this before… many people don’t know what to say to me, so now they simply say nothing at all.

But that doesn’t make it hurt any less.

Feeling like if I’m not whole and actively participating in life, I am not worthy of their time. It cuts ever so deeper when I realised that when I had nothing left to give, I lost most of my family. Many are apparently “there for me” but in an abstract way only that doesn’t require them to do more than send me texts. I have been relegated to acquaintance status. And I find my health problems are conveniently diminished by the use of reductive phrases like me being “sicky-poo”. One; I haven’t been “sicky-poo” since I was a toddler and two; I know this is a means to downplay the severity of my illness, because you don’t have to show up for someone who you refuse to acknowledge as being chronically ill.

Then there’s the people who treat chronic illness like it’s a competition.

I’m sure you know the type. If you complain about sleep problems, they instantly bemoan their own. If you’ve stubbed your toe; they’ve broken their own. When I was hospitalised with chest pains and high blood pressure, a family member had to change the conversation to them having visiting the hospital for an ingrown fingernail. Apparently routine outpatient treatments are equatable to being admitted to a cardiac assessment ward.

Being chronically ill, brings out the worst in most people.

And to add injury to insult, I find myself having to self treat and order my own lab tests to try and improve my health. Of course, the first thing doctors will say is that I shouldn’t self treat or self diagnose, yet in their unwillingness to help me, what else am I supposed to do? I’ve lost count of the number of times I’ve been declared to be the picture of perfect health based on basic bloods. Yet the advanced lab tests I have done reveal a completely different picture.

Worse, poorly informed doctors can hurt patients with bad advice. Case in point; the private GP who told me that I should treat my heavy metal poisoning with graded exercise therapy (GET). Never mind that it’s been scrapped from the treatment guidelines for people with CFSME, moreover, my body is so depleted of nutrients and my detox pathways so overloaded with oxadative stress, forced exercise would undoubtedly make me so much worse.

And I am no exception to the conditioning that society attachs to looks and our worth.

Which makes my continued hair loss and the burning peripheral neuropathy, yet another assault on my everyday life. It’s hard to feel like you matter when you know you are an afterthought to the people who proclaim to care about you, have doctors invalidate your illness, and feel the eroding effects of your condition on your body. I feel suspended in time, yet time is taking it’s toll on me nonetheless—both physically and mentally.

I’m not entertaining any thoughts of ending it all, but I can’t help but think of what my funeral might look like. A staged event with all these people rushing to say wonderful things about me after I’m gone. Virtue signalling writ large. There may even be some tears. All this from people who can’t be bothered to speak to me while I’m still here.

As always I find that whatever I’m going through, there is someone who has covered similar ground and in this case I find myself thinking of Monty Python’s “Always Look On The Bright Side of Life” from Life Of Brian. Specifically this part…

“Life's a piece of shit, When you look at it, Life's a laugh and death's a joke, it's true, You'll see it's all a show, Keep 'em laughin' as you go, Just remember that the last laugh is on you.”

#MentalHealth #Thoughts #MyCondition #HairLoss #Neuropathy #PeripheralNeuropathy #ChronicFatigue #MyalgicEncephalomyelitis #Fibromyalgia #BrainFog