neuropathy

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Chemo and nerve pain

At 62 I was diagnosed with breast cancer HER+ ER+. Had a mastectomy, went through chemo and have been taking Arimidex for 8 years. This August shortly after my 70th birthday, I was diagnosed with TNBC, triple negative breast cancer. Had another mastectomy and started chemo of Taxol, Carboplatin and Keytruda this past Friday. By Monday I felt like I had been beaten with a baseball bat. It was like 10x the worst fibromyalgia episode ever. Still some soreness a few days later. Just wondering if anyone else has experienced anything like this. I'm told fighting two different kinds of breast cancer is "unique " and I know they're throwing the book at me, but I'm going to need something stronger than Lyrica to deal with this. #Cancer #Neuropathy #Fibromyalgia

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How do you manage physical discomfort, pain, or fatigue while in bed?

There can be a range of reasons why we may feel physical discomfort, pain, and fatigue while spending our days in bed—from health symptoms and muscle tension to stiffness, even stress. Finding relief and some level of comfort can be a constant challenge, but it’s also essential for maintaining a sense of balance.

For some, it may involve using supportive pillows or cushions to adjust their body alignment and alleviate pressure points. Others may find relief through gentle stretches or movement, when possible, or by using heating pads or cold compresses to soothe sore muscles. Breathing exercises or practicing regular hobbies can also help reduce stress and ease the mind, which in turn can ease physical discomfort.

Sometimes, it’s about creating a comfortable environment—adjusting room temperature or dimming lights to promote relaxation. And for many, reaching out to loved ones or healthcare providers for advice or support can provide both physical and emotional comfort.

What helps you manage physical discomfort, pain, or fatigue while you’re in bed?

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

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I went on a "trip"

I have fallen twice in three days, and the third isn't over yet. Fell in my trailer Wednesday night. Yesterday my balance was horrible and I was on a bus trip. Had to load my own luggage, turned around, caught the curb and hit side of my head on the bus. I should have taken the offer of an ambulance because I now believe I had a concussion. I also did damage to my ankle. Has anyone had this hard of a time with nalance? N #Neuropathy #accidentalfall #weaknessin legs and feet "#recap your week

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What can you add to your living space to make it more accessible or comfortable?

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

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Beautiful day!

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 .

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Neurological side effects of biologic medication

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

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A Grief That’s New To Me .. #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