Trouble standing .

[[Ma...]]

Anyone who had trouble standing for a long period of time, 

I am too much stiff and weak to stand. I can stand on good days like 1-2 minutes ( but I have to move) and bad days not even 20 seconds . Sort of I turn into cement and severe weakness. Who had this and healed?

I have this since CT feb 2022

[[kn...]]

I've had severe problems standing and walking for almost a year now.  It came on, literally, over night and is still with me in spades.  I've obtained a handicapped parking permit and use a cane to get around.  Even with all that I can't seem to sit more than 10 min and feel the need to get up again.  The good news is that I finally gave up and reinstated 2mgs of my diazepam taper.  That helped a lot with the muscle weakness and tingling in my legs and feet.  I know that this is BZ related.  I had a complete neurological exam and the Dr. couldn't figure out what why I was experiencing all of these symptoms.  I told him that I had be WD from benzodiazepines for over 2 years.  He replied that he had never heard of such a thing and really doubted that any kind of medication could be causing this.  He then referred me to an 'internest'.

Edited February 22 by [kn...]

[[Ma...]]

5 hours ago, [[k...] said:

I've had severe problems standing and walking for almost a year now.  It came on, literally, over night and is still with me in spades.  I've obtained a handicapped parking permit and use a cane to get around.  Even with all that I can't seem to sit more than 10 min and feel the need to get up again.  The good news is that I finally gave up and reinstated 2mgs of my diazepam taper.  That helped a lot with the muscle weakness and tingling in my legs and feet.  I know that this is BZ related.  I had a complete neurological exam and the Dr. couldn't figure out what why I was experiencing all of these symptoms.  I told him that I had be WD from benzodiazepines for over 2 years.  He replied that he had never heard of such a thing and really doubted that any kind of medication could be causing this.  He then referred me to an 'internest'.

You were 2 years off and reinstated? 

[[kn...]]

No, I may have misspoke.  I was stuck at 2mg and could not stabilize for 5 months.  That's when I updated to 4mg.  I have a call in now to my prescriber.  They've promised me an Rx for oral diazepam and I'll start back down a tenth mg at a time.  Sorry for any misunderstanding. 

[[bw...]]

Yep exactly like me. This came back in my setback at 5yrs off. Im now 6yrs off and in hell with this symptom. So weak and fatigued.

[[Fo...]]

Started 2 years off after the flu.

I just keep pushing to get back to where I was before I got sick. 

It messed everything up

[[Ma...]]

On 23/02/2024 at 12:24, [[b...] said:

Yep exactly like me. This came back in my setback at 5yrs off. Im now 6yrs off and in hell with this symptom. So weak and fatigued.

I’m so sorry . This shit ain’t easy. How long were u feeling healed before u had this setback ?

[[Ma...]]

On 23/02/2024 at 14:08, [[F...] said:

Started 2 years off after the flu.

I just keep pushing to get back to where I was before I got sick. 

It messed everything up

For me it has been like this February 2022 bur indeed COVID gave another extra add too it for me too.

I feel and look like someone who is dying , even though I gained 60 pounds. My face is swollen eyes are dropping connective tissue is totally destroyed i have no strength left in my body to do anything. I was seeiing small improvements but COVID brought me back into the state I was in before the improvements. Also my whole body is having eczema ever since, which I never had. The muscles and connective tissue is just destroyed literally. 
Im so sorry foxclover. Are u losing hope for healing? Do you know if any stories of ppl severely injured like us who are fine now? I see almost all succes stories are those of ppl with mostly mental issues and akathasia. Those two also improved lots for me 

[[dj...]]

If I’m on my feet too long, my entire body starts to tense up.  It will work its way into my back and head and give me awful head pressures.  Once everything is set off, it will stick around the rest of the day.  
 

It’s crazy how much I plan my day around not taking too many steps or being on my feet for too long.  
 

I’m 18 months off.  I’ve had problems like this since I jumped but it’s gotten really bad in the last 3-6 months.  My first 6 months off, I could stay on my feet for a long time but would have some moderate issues later.  Now, I doubt I’m on my feet more than 20-30 minutes a day total (including showering, dressing, cooking, and just moving about at home).  If I push myself too far, it will bring on a lot of pain and fatigue. 

[[dj...]]

17 hours ago, [[M...] said:

For me it has been like this February 2022 bur indeed COVID gave another extra add too it for me too.

I feel and look like someone who is dying , even though I gained 60 pounds. My face is swollen eyes are dropping connective tissue is totally destroyed i have no strength left in my body to do anything. I was seeiing small improvements but COVID brought me back into the state I was in before the improvements. Also my whole body is having eczema ever since, which I never had. The muscles and connective tissue is just destroyed literally. 
Im so sorry foxclover. Are u losing hope for healing? Do you know if any stories of ppl severely injured like us who are fine now? I see almost all succes stories are those of ppl with mostly mental issues and akathasia. Those two also improved lots for me 

There are definitely success stories of people who have been bedbound with severe pain and muscle issues.  Yes, most stories are people with mental issues and more minor physical stuff because there are way more of them out there.  Few people get this bad so you’re going to have to look harder for those, yes.  
 

I’m having a terrible day with these muscle issues.  It’s got me down.  My body feels like it weighs a million pounds.  I’m more optimistic most days.  

Edited April 5 by [dj...]

[[Ma...]]

On 05/04/2024 at 02:59, [[d...] said:

There are definitely success stories of people who have been bedbound with severe pain and muscle issues.  Yes, most stories are people with mental issues and more minor physical stuff because there are way more of them out there.  Few people get this bad so you’re going to have to look harder for those, yes.  
 

I’m having a terrible day with these muscle issues.  It’s got me down.  My body feels like it weighs a million pounds.  I’m more optimistic most days.  

If you don’t mind, can you share some with me, I literally searched 1,5 year everyday in here and found many fellow sufferers but all still in it even after 5/6/7 years. 
I woukd be forever grateful if you can give me a few nicknames used in here who recovers from it, I seriously didn’t find any . 
 

[[Ma...]]

On 05/04/2024 at 02:59, [[d...] said:

There are definitely success stories of people who have been bedbound with severe pain and muscle issues.  Yes, most stories are people with mental issues and more minor physical stuff because there are way more of them out there.  Few people get this bad so you’re going to have to look harder for those, yes.  
 

I’m having a terrible day with these muscle issues.  It’s got me down.  My body feels like it weighs a million pounds.  I’m more optimistic most days.  

Het @[dj...] maybe u missed this post but can u refer me to some of them?

I am working on a database with successtories of thise with severe muscle issues but I haven’t found them yet. I only spoke to one person who was feeling a little better after 3 years but nowhere close to healed. I need them to share with my group of people who are not able to walk and stand anymore either . You would help us a lot if you can mention a few ,