Connect with others who understand.

  •   Learn from expert-reviewed resources
  •   Real advice from people who’ve been there
  •   People who understand what you’re going through
Sign Up Log In
All Resources Treatments A-Z Personal Assistant Help Center Crisis
Powered By
Real members of MyFibroTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Is anyone else bed bound and not by choice ?

A MyFibroTeam Member asked a question 💭
Cortland, NY

You name it I’ve got it . Cfs/m.e. Fibromyalgia, pots, multiple chemical sensitivity, pem, and related syndromes. Ugh 😩

January 3
 · 
Reactions
A MyFibroTeam Member

I have been, yes. Fortunately, I'm not right now, but I have had to spend up to 2 weeks in bed from fibromyalgia. I recently discovered POTS, and I'm spending a lot less time sitting/laying down with compression stockings and electrolyte drinks. But there are still days where the fibro pain and dyspraxia is too difficult or my energy levels are too low. I seem to be having more good days than bad in past two weeks, but it hasn't always been that way, and I was much sicker in November. Sometimes the body, especially a body with fibro, needs more rest. Hang in there!

January 3
A MyFibroTeam Member

Yes, I cease up cannot move for days at a time. I listen to audio movies downloaded from library. Hugs ,

January 4
MyFibroTeam

Are others experiencing being bed-bound with fibromyalgia and related conditions?

You're definitely not alone in this struggle. Many people with fibromyalgia experience severe symptoms that keep them bed-bound, and it's incredibly frustrating.

A MyFibroTeam member shared spending most of their time in bed during their Show Full Answer

Are others experiencing being bed-bound with fibromyalgia and related conditions?

You're definitely not alone in this struggle. Many people with fibromyalgia experience severe symptoms that keep them bed-bound, and it's incredibly frustrating.

A MyFibroTeam member shared spending most of their time in bed during their health crisis, dealing with overwhelming pain and fatigue. Another member described being bedridden for extended periods, unable to even shower for a full week because standing was too difficult.

The combination of chronic fatigue syndrome (which often occurs alongside fibromyalgia), orthostatic intolerance (POTS), and post-exertional malaise can make daily activities feel impossible. These aren't separate issues—they're recognized comorbidities that frequently occur together with fibromyalgia.

What you're experiencing is real and valid. The exhaustion, pain, and inability to function aren't "in your head," even though many people struggle to understand the severity of these conditions.

Some members have found that working with understanding doctors who believe their symptoms has been crucial. Others have needed to apply for disability benefits because the combination of symptoms makes working impossible.

It's a tough reality, but connecting with others who truly understand what you're going through can help you feel less isolated in this experience.

January 3
A MyFibroTeam Member

Trevor is feel your pain, literally. In 2003 & even today's doctor's tell their fibro patients it won't kill you. But they don't add in all the other many diseases that we are predisposed to get. Its only in the past few years that they have found it can cause chronic pancreatis. This year has been a rough 1 for me too. Diagnosed with EPI (weighed less than i did in JR High School), Chronic pancreatis, fatty liver (MASLD) They decided partly caused by my chloresteral med & Zoloft. I'll admit to having a sweet tooth during the pandemic, but i lost weight in 2023. I also have problems with idiopathic hypersomnia ( it's like being allergic to daylight, can't stay awake. As I mentioned earlier the National Medical Library has reports of Fibro causing chronic pancreatis. It does so with elevated cytokines. And guess what all my diseases, plus CF have in common. High levels of cytokines.
Im hoping my doctor will put me on an inflammatory cytokines inhibitor.
I'll let you know if it helps. Im almost 70 so I don't think it can hurt.

January 8
A MyFibroTeam Member

Winter, the really cold weather, is extremely rough on me. I will get chills that won’t go away and this Winter, almost daily, I have to get back into bed, with all my blankets & heated blanket and stay there until I warm up. Nothing else works for ne.

Thankfully my home is warmest in the evening, so most evenings I’m okay.

January 4 (edited)

Related Questions

View All

Is anyone else bed bound

A MyFibroTeam Member asked a question 💭
Cortland, NY
June 26

I'm not faking being sick...
Your fibro does not define you...
History Shows You Are Not Alone With Fibromyalgia