severe muscle loss leading to pains and immobility

In Jan ’22 I became benzo-free after 10 months of Zolpidem, a few cold switches and nasty withdrawals to Zopiclone and back, a failed Trazodone 75 mg 2 week taper followed by reinstatement, a cross-over to Diazepam. All credits to becoming benzo-free go to this community. I’ve been on Trazodone since Dec ’20, various dosages, tried and failed rapid taper. In Nov ’21, while tapering down Diazepam I started a very slow taper of Trazodone. As of Nov ’22 I am on approx. 29 mg down from 50 gm in Nov ’21.

After becoming benzo-free there were only mild residual symptoms I observed for a few months. The slow Trazodone taper went for the most part not much eventful (full history in my intro topic here http://www.benzobuddies.org/forum/index.php?topic=275304.0) .

 

I know there’s been quite a few threads about muscle issues, including muscle loss which I’ve read, however I was not able to match my current, severe predicament I am in.

 

Ever since Dec ‘21-Jan ’22 I started noticing muscular issues in addition to twitching, jerking, stiffness. Specifically, it started to become obvious that I was losing muscle mass (potentially other lean tissue as well). It progressed slowly without any break all the way until today and it is still ongoing. The muscle loss is all over the body, not just a specific area. It has become so severe that it has impaired pretty much all physical activities. Concrete examples: lost all the cushioning in the buttocks, making it impossible to sit for longer than a few minutes without pain, feels like I am sitting on concrete with my bones in my buttocks and the sides and the upper side-bone of the leg that connects into the buttocks. Lost so much in shoulders and forearms that at the moment holding the phone for longer than 30 sec at a time triggers pains. The thighs and calves are reduced to bone with some muscle and ligaments and hanging skin. Cannot stand or walk for longer than few minutes without triggering pain. Cannot standup right properly due to loss of muscles in the back and it becomes painful after a while. Cannot walk barefoot as I get huge pain in the foot arch right away. These are some examples. The pain mentioned above which is triggered after shorter and shorter period of activity starts as dull then if activity continues, pain becomes sharper/stinging/burning for it to be accompanied by pins and needles and shooting nerve pain that comes and goes and can linger for hours. Often times I am getting also muscle twitching in the muscles recently used more. Please note that I am not talking about muscle weakness here. Many months ago, the pains were mostly muscle in nature and not nerve pain. I believe there is so much lean tissue that went away and nerves got more and more exposed, that I am getting more and more nerve pain. Most body parts are so sensitive and can trigger nerve pain that I can’t wear clothing that has stitches which press against my body. At this point I am over 90% bedridden and have no other symptoms besides these. The worst of the worst is that since last week or so, I am woken up by various pains that I am getting.

My joints are also unstable and movements can strain nearby muscles easily.

 

I have consulted neurologist, rheumatologist, did EMG 1 leg, did spine MRI, brain MRI, tons of blood tests, including thyroid hormone levels, CK levels, inflammatory markers such as CRP, etc. Nothing was resultant, as of ~ half a year ago when most of these tests were performed. My situation at that time was relatively OK (e.g. I could still walk for 1h, sit down for a few hours, etc). I have started to ask for second opinions because it doesn’t look to me like withdrawal anymore but unfortunately, I live in Canada and the specialist wait times are horrendous and my time is slowly running out.

My appetite and diet have been balanced throughout, taking in vegetables as well as proteins, no junk food, no alcohol, no caffeine since Nov ’21. Had been doing physio regularly for 11 months until Nov ’22, when it became difficult to perform most exercises. Throughout those 11 months the ability to perform exercises and stretches has been degrading slowly overtime.

 

Hoping you are still reading this, here are specific questions I have:

Can someone relate to the above issue with the continuing muscle loss leading to pains, despite not having other symptoms, really? Moreover, I am wondering if it could be benzo or AD withdrawal? Or can it be from taking Trazodone? Or could it be a medical condition unfortunately not yet identified that might have been triggered by any of the withdrawals?

 

Thank you!

 

Hey there!

I’m so sorry for your pain

Although mine did not come on slowly, mine came very fast. But still, I can relate to losing muscle mass, the feeling of pain like concrete where sitting or laying or basically where there is any pressure on your body. I was skin and bones with some sagging left over muscle. I was completely bedridden. I also had the twitching, muscles spasms, nerve pain etc. Couldn’t walk or function. Bedridden. So….I do know how that feels….it’s unbearable!

Mine came very fast after withdrawal, not slow like yours.

 

But can you clarify for me: how long benzo free?

And how long since last cut on trazadone? And what is your taper pace and dosage cut schedule for the trazadone?

Hey there!

I’m so sorry for your pain

Although mine did not come on slowly, mine came very fast. But still, I can relate to losing muscle mass, the feeling of pain like concrete where sitting or laying or basically where there is any pressure on your body. I was skin and bones with some sagging left over muscle. I was completely bedridden. I also had the twitching, muscles spasms, nerve pain etc. Couldn’t walk or function. Bedridden. So….I do know how that feels….it’s unbearable!

Mine came very fast after withdrawal, not slow like yours.

 

But can you clarify for me: how long benzo free?

And how long since last cut on trazadone? And what is your taper pace and dosage cut schedule for the trazadone?

 

Hi there. Regarding your questions:

 

I've been benzo free since Jan '22

Last cut on Trazodone was in Nov '22 ; there was a failed attempt to updose in Dec '22 (1 day); so around 2 months on approx 29mg

Tapered from 50gm to 29mg over the course of 12 months. Cut approx 5-10 % every 6 weeks, but not single big cuts, but rather divided over 4 weeks followed by 2 weeks+ holding. It was closer to 10% in the beginning but once reaching 35mg had to slow down, mostly to avoid too many rough nights.

I’m from Canada too!

In the GTA.

 

I have a lot of these symptoms after getting off Ativan.

Was stuck on both Ativan and Valium.

 

I also take Trazodone and cut down from 75 to 50.

 

It has brutal side effects, similar to a benzo if you read on SA.

 

Have you had you COVID vaccines, had COVID at all?

 

I experienced this right after my booster dose, and it’s Ben bad ever since.

 

I then had COVID a few times, last being in Nov. which coincided with another massive amount of muscles wastage.

 

No idea what to do, as I’m still tapering and I cannot go fast.

 

I’ll be interested on peoples responses.

 

I’m aware that people undergoing chemo get something like this as well!

 

I’m not sure how to fix it at this point.

 

I’ve tried physio, chiro etc. that was great until I got off the Ativan.

 

Then the hell unleashed….

 

Yes write smaller amounts and I don’t do paragraphs anymore.

 

Easier for people to read.

 

It should get better.

 

Best wishes

 

Winnie

I’m from Canada too!

In the GTA.

 

I have a lot of these symptoms after getting off Ativan.

Was stuck on both Ativan and Valium.

 

I also take Trazodone and cut down from 75 to 50.

 

It has brutal side effects, similar to a benzo if you read on SA.

 

Have you had you COVID vaccines, had COVID at all?

 

I experienced this right after my booster dose, and it’s Ben bad ever since.

 

I then had COVID a few times, last being in Nov. which coincided with another massive amount of muscles wastage.

 

No idea what to do, as I’m still tapering and I cannot go fast.

 

I’ll be interested on peoples responses.

 

I’m aware that people undergoing chemo get something like this as well!

 

I’m not sure how to fix it at this point.

 

I’ve tried physio, chiro etc. that was great until I got off the Ativan.

 

Then the hell unleashed….

 

Yes write smaller amounts and I don’t do paragraphs anymore.

 

Easier for people to read.

 

It should get better.

 

Best wishes

 

Winnie

 

Hei!

Glad to hear that another GTA-er is in the process of getting rid of these poisons.

 

I am familiar with SA; I've been also frequenting that forum for over a year now. Withdrawal from Trazodone, if done very slowly, it shouldn't be too bad until you hit low doses (or it wasn't for me until I got to 35 and below). I hope your taper goes smooth.

 

I have been vaccinated and got 1 booster 13 months ago. Also contracted Covid 4 months ago. None of these seem to influence my situation directly.

 

Like I was saying above, my huge issue here is not the muscle loss itself, but that it broke mobility in my body, making me over 90% bedridden. Having all sorts of pains also nerve pain when making all sorts of moves, getting into certain positions etc. And everything getting worse by the month, then week then day.

Ah, gotcha!

 

Yes my nerve pain is very bad to the moment.

 

I’m pretty bedridden too, but can’t lie flat because of the acid reflux.

 

But I’ve got every neuralgia going on in my head.

 

i also can’t get comfortable at all!

 

I use a lot of heat and even ice sometimes.

 

How is your dr?

 

Do they believe any of this?

 

Mine are brutal, except my POTS dr she gets it.

 

Family dr is finally on board, but just thinks it’s long COVID, which I have too.

 

Neurologists here are a waste of time. They’ll tell you it’s in your head etc.

 

I have a good neurologist for my migraines, but that hasn’t helped, as these are like pressure headaches and from contracting muscles etc

 

One thing that helps me are my compression stockings.

 

Winnie

Ah, gotcha!

 

Yes my nerve pain is very bad to the moment.

 

I’m pretty bedridden too, but can’t lie flat because of the acid reflux.

 

But I’ve got every neuralgia going on in my head.

 

i also can’t get comfortable at all!

 

I use a lot of heat and even ice sometimes.

 

How is your dr?

 

Do they believe any of this?

 

Mine are brutal, except my POTS dr she gets it.

 

Family dr is finally on board, but just thinks it’s long COVID, which I have too.

 

Neurologists here are a waste of time. They’ll tell you it’s in your head etc.

 

I have a good neurologist for my migraines, but that hasn’t helped, as these are like pressure headaches and from contracting muscles etc

 

One thing that helps me are my compression stockings.

 

Winnie

 

Nothing for the acid reflux that helps?

 

Glad to hear that you have some doctors that help. Unfortunately that is not really my case; not one was able to understand and help with the horrific benzo withdrawal experience that I had 1 year ago. I figured it all out with helo from BB. I only got them to prescribe.

Other issue I am currently facing with them is that they would not try/explore all possible causes for my ailments and are rather dismissive and short sighted.

 

Hope your nerve pain improves soon.

fellow buddies - my doc wants to put me on pregabalin to help with the pains, at least until some specialist figures this out. Now .. I am aware of the horror stories around pregabalin, side effects and withdrawal similar to benzo withdrawal. wondering if there are any positive experiences from anyone here, though?

thoughts?

HI

Please search my posts under my username, you will see the torture I have endured with the muscle issues,,,,In short, I have squeezing throughout my body, my head, neck, abdomen, not muscle loss per se, but squeezing, pressure, stifness I guess,,,,,I was 2.5 years off and started using small doses of valium and smoking weed again at night, Im still strong at the gym but its very hard to sit in a chair at dinner, as the pressure in my abdomen is unreal,,,all the medical tests like you, NO issues, CTs of my abdomen, nothing, 2 neurologists and a visit to a movement disorder clininc where the best doctors reside, nothing, they claim its an anxiety disorder, and they maybe correct, however the pills or perhaps my lifestyle exascerbated it all, this is coming from a pure athlete and great shape my whole life, now the agitation and tension is something else, I stopped worring about things, but im not sure if my nightly cannabis use and playing with valium made things worse, I would like to give the weed a break and see if there is any changes, I do think cannabis is beneficial, but maybe more spaced out for me,,,I cant imagine this lasting forever, but It may take years to resolve, its like poltergiest, you know somethings going on, but when doctors show up they find nothing

HI

Please search my posts under my username, you will see the torture I have endured with the muscle issues,,,,In short, I have squeezing throughout my body, my head, neck, abdomen, not muscle loss per se, but squeezing, pressure, stifness I guess,,,,,I was 2.5 years off and started using small doses of valium and smoking weed again at night, Im still strong at the gym but its very hard to sit in a chair at dinner, as the pressure in my abdomen is unreal,,,all the medical tests like you, NO issues, CTs of my abdomen, nothing, 2 neurologists and a visit to a movement disorder clininc where the best doctors reside, nothing, they claim its an anxiety disorder, and they maybe correct, however the pills or perhaps my lifestyle exascerbated it all, this is coming from a pure athlete and great shape my whole life, now the agitation and tension is something else, I stopped worring about things, but im not sure if my nightly cannabis use and playing with valium made things worse, I would like to give the weed a break and see if there is any changes, I do think cannabis is beneficial, but maybe more spaced out for me,,,I cant imagine this lasting forever, but It may take years to resolve, its like poltergiest, you know somethings going on, but when doctors show up they find nothing

had a flick through those; sorry to hear about your years long struggles. must be beyond frustrating.

highly likely that any GABAergic intake post-withdrawal (such as the Diazepam) negatively impacted the healing, as the THC does. When I tried weed myself, sent me straight into ugly panic attacks (this was during tapering).

 

Not sure how Pregabalin recommended by my doc for my pains would impact me...

Hey there!

I’m so sorry for your pain

Although mine did not come on slowly, mine came very fast. But still, I can relate to losing muscle mass, the feeling of pain like concrete where sitting or laying or basically where there is any pressure on your body. I was skin and bones with some sagging left over muscle. I was completely bedridden. I also had the twitching, muscles spasms, nerve pain etc. Couldn’t walk or function. Bedridden. So….I do know how that feels….it’s unbearable!

Mine came very fast after withdrawal, not slow like yours.

 

But can you clarify for me: how long benzo free?

And how long since last cut on trazadone? And what is your taper pace and dosage cut schedule for the trazadone?

Hello how are you guys doing with this now im only 26 and just about 2 months off 10 years of 3mg K use my muscles burn a little bit but seems to be wasting away so fast I run my own cleaning business I’ve continued to work and walk in the evenings but I’m so scared I am going to become incapable of doing this unless still have a numbing sensation all over my body that has been there since end on my 2 month fast taper TIA

Hey how is your muscle loss I am 7 weeks off 10 years of clozepam and having pretty bad muscle wasting I’m only 26 this is really hard fear I’m going to loose them all

How is your muscle loss now im having the same issues 7 weeks off clozepam loosing all my muscles rapidly I’m only 26 this is awful

No improvements here on my end; only getting worse :'(

I’m so sorry to hear that this is absolutely insane to feel this way! What are your other symptoms I will say a prayer for you!

I’m so sorry to hear that this is absolutely insane to feel this way! What are your other symptoms I will say a prayer for you!

thanks. No other big symptoms besides what I already mentioned , really