Bedridden

Hey guys

 

Has anyone experienced being severely bedridden with extreme muscle atrophy and deconditioning? For the last 3 years I would estimate I’ve been stuck in bed Probably 98% of the time. Aside from making quick easy meals and coming close to passing out, and short trips to the bathroom, that is the only time I’m not recumbent. My mobility problems stem from severe POTS like symptoms and pain. My head also feels really unstable on my spine when I walk.

 

Can anybody out there relate to this?

 

There is a member who posts on the protracted board who is bedridden, her name is racksha, I'm very sorry to hear how small and painful your world has become. 

I will check this out thank you

All of that but as get lower also no bearable position to lie in as body crushing itself, any muscle left is like hard ricks grinding, vertebra being forced out of position, memory foam feels like lumpy concrete to lie on, every jo)not in body agony. Can’t take any meds.

 

Had the heavy head since got ill in 1996 - got ME diagnosis. Think it is actually Craniocervical Instability.

Lots ppl with ME finding they have that.

 

Was never this bad though and not only weak but muscles tight, dragging head back, down and to side. Can’t retract chin or put it forward because too tight at back and up under skull.

Bed ridden 95% for 2 yrs since starting taper after 5 days use of 2.5mg valium daily, now 1 yr off only got worse with new sx of extreme fatigue and shortness of breath to the original muscle rigidity dystonia like Ajusta described and severe  fybromygia-- pins and needles, burning numbing

 

Muscle altrophy allover but not the main reason for being bed ridden as when the above listed sx are lessoned enough, can still get out of bed.

 

Muscle streghth improved some after jumping, was not able to lift a cup during tapering now can hold 1 pound.

 

What dose are you at now?

When did the muscle altrophy started?

 

I’m so sorry you are dealing with all this.

 

Muscle atrophy started quite awhile ago. Maybe 3-4 years

So sad to see you suffering with this for a long time too. I can see I’m not alone and I know on the protracted board there are several people bedridden.

I’m 4.5 years off and mostly on my couch. Suffering anxiety and severe headache 24/7. No window

Waiting for a better day to come for all of us

Hi all. I'm bedridden as well. End of my ambien taper was hit with severe dizziness/ boatiness. I'm 3 months post jump. I'm doing everything I can to get out of this bed. It's causing much neck tension and muscle weakness. I guess more time is needed.

I'm almost bedridden. 6mg Valium, tapered 2+ years, jumped this May.  I go between the the bed and couch 95% of the time.  Showering is my biggest activity every 2-3 days. Some days I do 1 chore for 5 minutes.  I can get a few hours of minimal functioning 1-2 days a months but then pay for it for days.  I have no visible bicep, calf, or thigh muscles.  I was like this during tapering but improved a bit after a move.  It returned after I got sick in March. Then became severe this last month after I was sick in August again. I originally got sick in spring 2018 and never recovered fully. 

 

My body seems to attack a different body part every few weeks. It's my wrists this week so even using my phone is hard. Left shoulder hurts to lay on it for a month now.

 

I hope you guys find relief and recovery.

 

Do you guys remember

 

I have symptoms of CFS and Fibro but have no diagnosis.

Sunshine, thx very much. I wish you relief too

I'm even worse. I can't even sit or lie down because of the pain. I wish I could not walk, but did not feel pain.

I am saved only by the distraction to this forum from horrible symptoms.

Ar old, don't give up. I'm sorry you're in this terrible state. I'm sorry for all of us bedridden people. I'm grateful for this forum as well. It's been a huge benefit and a great distraction. I'm hoping to be able to be out of this bed soon.

I'm fortunate not to be in this tragic position, but my heart goes out to you all.  I'm wondering if you could have contributing conditions.  The reason I ask is because prior to, and contributing to, my misguided Klonopin use last spring I went through very frightening chest pains and numbness/tingling that crept over a period of weeks from my left foot up my body, up my neck and finally across my brow.  A brain MRI revealed nothing and a Lyme's Disease test came back negative. But my CNS symptoms have worsened in months since and I'm not sure if they're because of the Klonopin I started using, or something else, or maybe both.

 

Especially since being an avid hiker and outdoorsperson I have picked up many ticks over the years.  I've wondered if I should be tested for other tick diseases besides Lymes, as they also can have longterm neurological impacts.

 

I'm just sharing this because some of the symptoms you folks mention remind me of Lymes, and it does seem possible you could have contributing conditions unrelated but aggravated by benzos.

 

Hugs to you all.  Don't give up! 

 

clearbluesky

Hi clearblue thx for your insight and compassion. I'm happy to report that I've never been bitten by a tick. I'm 1 million percent certain that my symptoms are entirely Ambien usage related. It's the only medicine I've ever had. Before taking it, I was completely fine. The tests that people go get WILL come back normal because this is a matter of gaba & glutamate mishaps in the brain. No MRI, CT SCAN or any other test can detect it. But the doctors see & know their patients are having these issues. Some deny it because they don't want to be responsible but they KNOW! So does the pharmaceutical companies. Lyme disease is easier to identify and has some similar symptoms. But it's an impossible diagnosis when you've never been bitten by a tick.

Did any of you have your thyroid checked?  I know withdrawal has a major impact. 

Benzo's and w/d didn't affect my thyroid at all.  I've been hypothyroid for decades and it's not gotten worse.

Yes I have mine checked about every 6 months. All is fine.

I am so sorry you have all been debilitated to this degree.  My prayers go out to each of you that healing will take place eventually.  Hugs

I wish that I could be bedridden and not have to deal with and worry about so many things in my life.  I wish someone would just take care of me and do everything for me. 

I am so sorry you have all been debilitated to this degree.  My prayers go out to each of you that healing will take place eventually.  Hugs

Thx so much for your compassion. I pray you're doing well. Big hugs

I wish that I could be bedridden and not have to deal with and worry about so many things in my life.  I wish someone would just take care of me and do everything for me.

 

Becks please don't wish that you were bedridden. There's nothing pleasant about it at all. Nobody is waited on hand & foot. That would be nice but not reality. It's important that you keep as much of your mobility as you can. When bedridden you have to wait until someone is available to help you, starving hungry but can't fix your own meal, have to use bathroom but so dizzy so your terrified of falling cuz if you hurt yourself then you have to wait until someone can help you. You can't drive, do family activities, plan anything, go grocery shopping, wash your own hair or body without help, can't sit up to simply watch tv, you're left behind/ left out, forgotten about, treated like you're a burden, watch others half do your chores....I can go on & on about what bedridden people endure. Don't ever wish to be in a bed prison.

What I meant to say is that I wish I could sleep all day just one day, but I can't.  I have too much to deal with.  I need to feed my cat, cook my own meals, etc.  I wish I had someone here who could take over for me for awhile.  I need rest, but can't get it.  I live alone and have so much to deal with.  That's what I meant by wanting to be bedridden--just for awhile or a few days at least.  Just 3 days to have nothing to deal with would help me so much, but I don't have that luxury.

Oh ok. I see what you mean. I'm sorry that you're alone. I wish I lived nearby to help you out, sweetie. I'm sure you have those days that are tough to get up. You live alone but you're not alone on here. I'm happy to have met you on here. You're very smart and you inspire me. Thanks Becks! Your strength is evident. It gives me hope. Big hugs to you 

I had to go out and cut the darn grass today and do the edging too and I have about 1/4 acre and it nearly killed me.  I overdo it nearly every single day.  Everything stresses the heck out of me all the time.  I wish I could just sleep all day and had someone else helping me with things.  But, I live alone and have to do things myself all the time.

Wow girl. Slow down sweetie! You can't be overdoing it. Have you tried making yourself a task list for the days of the week? Monday vacuum Tuesday dusting Wednesday laundry etc for example. You can also cut half the yard at a time. I know that's tough being alone. What's worse is having a house full of people and still be alone.  whatever you can put off for another day please do so. I'd hate to see you keep overdoing it. Rest is important and I know you know it. Sometimes we get to doing things and forget to be careful. It happens to us all. Maybe you can find a volunteer group that help people with illnesses for free. Some communities have those services.