Muscles / fat / connective tissue turned to....mush?

[[...]]

Collagen is very high in glutamate.

 

It might be worth the risk if someone’s muscles are atrophying and they are literally wasting away.

[[Aj...]]

Mine have wasted away.

I tried collagen.

It didn’t help and made other symptoms worse.

 

But, we are all different.

 

Withdrawal seems to have caused very severe EDS.

 

It might also be excess glutamate - studies show glutamate injected in to muscle destroys ot.

 

My periods suddenly stopped as well so could also be hormonal.

 

 

[[...]]

Gotcha. I’m only trying to help. Everyone is different.

[[Tr...]]

DBM: As you write, sometimes it might be worth the risk. And it's good, that you are positive even if life is very difficult. 

 

 

[[Aj...]]

Yes, and we all risk things all the time trying to find a way through even doing things other ppl suggest that then backfire.

 

It might be getting checked for EDS because with that collagen can’t help because your collagen is defective just like with severe TMJ issues doing exercises actually causes irreparable same so we have to think carefully about the advice we give to other ppl based on our own experience and assumptions don’t we.

[[Tr...]]

Yes, and we all risk things all the time trying to find a way through even doing things other ppl suggest that then backfire.

 

It might be getting checked for EDS because with that collagen can’t help because your collagen is defective just like with severe TMJ issues doing exercises actually causes irreparable same so we have to think carefully about the advice we give to other ppl based on our own experience and assumptions don’t we.

 

Ajusta. We all make our own choices, and no one is forcing anyone else. We want to help each other, and not just complain. If you don’t like it, just forget it.

[[...]]

DBM: As you write, sometimes it might be worth the risk. And it's good,  that you are positive even if life is very difficult. 

 

Thanks, translator. Agreed. It’s really a benefit/risk analysis and everyone should look into recommendations and how they could be affected. If every suggestion on here had to take into account each person’s medical history and body chemistry, we’d never write a post!

 

For severe muscle wasting, I think looking into collagen is worth the time. Apparently the glutamic acid is bound and not free, and the body disposes of the unused amount. Also, there’s tons of glutamate in very common foods. So while I understand not wanting to throw off the gaba/glutamate ratio, a young woman suffering in a wheelchair due to muscle wasting and who already has every symptom in the book might find it worth trying.

[[Re...]]

Muscle wasting. Yep this happened to me during withdrawal.

[[Aj...]]

Muscle wasting. Yep this happened to me during withdrawal.

 

Did it happen really fast while you were still able to exercise?

Has it returned.

[[Bl...]]

Muscle wasting. Yep this happened to me during withdrawal.

 

Did it happen really fast while you were still able to exercise?

Has it returned.

 

It happened real fast to me. Both muscle waisting and rapid weight loss(almost 50 lbs loss within 4+ months). The muscle loss was phenomenal. I struggled with borderline acute akathisia the first year of benzo w/d...so I felt compelled to walk nonstop. It was gruelingly painful.

 

My muscle mass never fully recovered...but it did enough to where I'm less concerned about it. I have gained back 30 lbs and am fine with that. The low back damage never fully resolved and is concerning.

 

The akathisia flares up late at night only...and is way manageable than at first.

 

I stay active by walking as my source of exercise. It is a constant challenge due to the low back issues that were manageable before this benzo ordeal began. However, since this ordeal began, back issues are very disabling/constant challenge.

 

Some days are better than other days....but rarely do I go about a day not being consumed by limitations resulting from these drugs.

 

I am certain, had I never taken a benzo, I would be in WAY better shape right now.

[[Aj...]]

Have you had MRI or anything?

If so does it show anything in spine?

Anyone do a muscle biopsy or anything?

I have a lot of degeneration etc.

Can’t walk atm.

I was okish on the Benzos - was on them for spinal/muscle problems.

Do you have severe tightness as well as pain?

[[Bl...]]

Have you had MRI or anything?

If so does it show anything in spine?

Anyone do a muscle biopsy or anything?

I have a lot of degeneration etc.

Can’t walk atm.

I was okish on the Benzos - was on them for spinal/muscle problems.

Do you have severe tightness as well as pain?

 

 

 

I have osteoporosis....found out during this benzo ordeal, if I recall correctly. The only other bone density scan I had showed I had osteopenia. That initial scan took place a number of years before this benzo ordeal began.

 

I also had an x-ray over 25 years ago showing a defect in the coccyx area, indicating I am predisposed to muscular/skeletal pain.

 

I'm sure there is scar tissue from a few surgeries I've had. It feels like the muscles are stressed out...mainly manifesting hardened muscle like trigger points. I have tender points in all quadrants of my body too...FMS. I'm sure nerve damage is in the mix.

 

Plus, I had a pretty bad fall that seriously impacted that same area(coccyx) some 33 years ago. Over the years, since the fall, I have had several x-rays of my back. I've never had an MRI specifically for back issues. Came close to it around 4 years ago. But I decided to pass on going through with it.

 

I will only agree to any further tests for my back in an ER setting.....maybe in a less intense setting...but NOT likely. I've never had a muscle biopsy for any back issues.

 

I'm so worn out from what the benzos have done to my health...I have very little strength/desire to monitor any current health concerns. My teeth are my main priority.....need them to eat with. Benzos significantly affected my teeth...and vision.

 

I hold on tight to the hope that I am still recovering from past benzos/z-drug prescribed use.

 

And by extension, I want to hold out that same hope for all who are suffering from what these lethal drugs have caused/or possibly worsened as regards any pre-existing issues(?). They have their place...just needs to be respected.

[[Aj...]]

Seen others with osteoporosis in this.

It is a very real possibility for me as been ill for many years so limited exercise.

And WD seems to have thrown me in to menopause.

 

I think I have Craniocervical Instability - think that is what caused all the stuff right from 1996 and that tends to come with tethered cord syndrome as well. A lot of ppl with an ME diagnosis that had my Neuro symptoms are funding that is what is really wrong.

 

Now so sensitised no way can have surgery even if it was available in U.K. which it isn’t.

 

How old are you BlueRose?

 

Have you looked into Lpw Dose Naltrexone?

 

It can be quite miraculous for pain and many other things?

 

I am going to try it but don’t think it will help because I think the rigidity in upper back , neck, shoulders, jaw, buttocks  is largely structural from spinal arthritis and hypermobility/EDS.

[[Bl...]]

I'm 63. Thank you for the suggestion...I'll look into it.

[[Jo...]]

4mom

 

Yes like muscle melting away. But I feel it’s more than just muscles. Feels like the connective tissue surrounding muscles and fat are also gone. When contracting it feels like there’s no middle ground. Sort of like all or none contraction.

 

So u were bedridden during the taper as well extending into post taper?

 

It’s so bizarre that this is happening to me NOW.

 

I agree it’s muscle and nerve damage from drugs, I also think lack of sleep is contributing to the deterioration.

 

Yeah it happened very shortly after becoming bedridden. Like as I was losing function of my muscles I started noticing signs of the softening of the tissues. For the first 7 months I was walking around, swimming, I had 90% mental symptoms. But I could Feel something was “happening” physically too. Like my muscles felt like they weren’t recovering after walking. They weren’t recovering after sleeping. They werent building itself back up. Which is why I feel like sleep may be a cause too.

 

Ptsdmiracle

 

Please forbear ... I would like to reply to this comment.

 

I believe that sleep deprivation and lack of sleep over long periods of time (even several years) has a lot more to do with all of these symptoms than is actually realized.  I've gone 35 days straight with NO PERCEPTIBLE SLEEP... and I've had sleep deprivation for the past 15-18 years.  I was bedridden for 5 years.  It took me a very long time to realize how many of my SEVERE symptoms are from not sleeping.  I'm not disagreeing with what you are saying about your suffering at all, though.  I just wanted to bring that out because I really believe it's true.  I've come very near death many times as a result of not sleeping.  I'm sure of it.  I'm a severe damaged case, too... and it wasn't even a few months ago that I almost died again.  Having taken Klonopin for 20 years along with Dilantin... I also know what the muscle and connective tissue hell is like... and believe me... Klonopin is the WORSE benzo with regards to muscle problems and tissue problems, etc... in my opinion.  Of course the drugs cause all kinds of problems like these... but I believe it's the lack of sleep that is the primary cause of the most painful experiences even with the worsening of the deterioration and tissues, muscles, etc...  I've also had several CT's off Klonopin and other meds as well... so I know where you are coming from with your hardcore long term suffering.  After my FIRST taper off Klonopin... about 6 months out I was having severe muscle, connective tissue, fat, etc... problems that sound just like what you have described... and looking back... that was during the time that I had the worst sleep deprivation ever being off of benzodiazepines at the time.  I don't believe I would survive without benzos... in fact... I don't even think I could survive another cut.  I was off EVERYTHING for six months before I almost died several times...Having started abusing my brain and body at age 9 with bad things... I've been on some sort of drug my entire life pretty much even up til now including 30 years of benzos and 20 years of siezure medications.... plus early childhood drugs and alcohol up until adulthood... I'm telling you... it's the sleep deprivation that takes us down the most.  That's just my opinion... and you have my deep empathy for your terrible suffering.  :'(

 

 

Kindly,

j

[[No...]]

 

PtSD miracle, did this person recover? Someone was asking about them. I hope they did

I believe you miracle. It's not just the lack of use of muscle causing the atrophy and loss. It's much more frightening.

 

I couldn't stand up still or sit for about 2 yrs for longer than just a minute not only due to lack of  muscle support but more the strong pulling of entire skeleton from contraction. I still can't stand up still now due to the contraction and dystonia it caused but keep walking is ok as the muscle streghth is back.

 

Same reason I can only do floor exercise.

 

Do ur muscles feel scarred?

[[Ma...]]

anyone recovered from this?

 

I am almost 7 months out I have this now for 19 montjs and it’s not getting any netter

[Guest [...]]

I don’t know, but this has started happening to me the last few months, most notably the last few weeks.

 

Very fast, out of nowhere!

 

I also have to sleep all the time, cannot stay awake.

 

I’m loosing a lot of weight, and strength etc.

 

I haven’t been able to taper in weeks.

 

Drs are running a bunch of tests.

 

Looking for answers too!

 

Winnie

[[Fo...]]

I don’t have a better scientific word to explain what’s going on but for the past couple of months I’ve developed a new frightening symptom. The muscles, fat, connective tissue, basically whatever’s between my skin and bones have turned consistency. They feel like “mush”, like gone, evaporated, collapsed. And when I touch it it feels like one of those already bursted bubble wraps, without the air in them Like before. Feels like the cells just collapsed or disappeared. When I step on my feet or sit on my butt, I can literally feel the weight crushing my bones on my skin with nothing in between. Pain.

 

I feel like the wicked witch of the west just melting.

 

Anyone else...?

Yeah,  it felt like the connective tissue was not there or withered,  very painful

[[mt...]]

same here and is going on for at least 18 months now. I lost soooooo much muscle. that I can no longer sit or walk for a few minutes without pain. I have to be helped with any tasks requiring hands/arms. Barely do anything myself. Even pressure from clothes creates problems . all my bones are crackling.

And all the muscles circumference measurements are indicating that is getting worse. Highly likely I will be completely disabled.

[[Fo...]]

same here and is going on for at least 18 months now. Can no longer sit or walk for a few minutes without pain. I have to be helped with any tasks requiring hands/arms. Barely do anything myself. Even pressure from clothes creates problems . all my bones are crackling.

And all the muscles circumference measurements are indicating that is getting worse. Highly likely I will be completely disabled.

How long you been off ?

I thought this too.

It isn't the case though, I had severe pain and cracking, I would cry even walking was too hard sometimes because the pain in my back, ribs, it will get better.  I take glutathione and vitamin d with k, I don't know it it helps but it seems to. I have made slot of progress with the pain, it felt like a disease.

[[mt...]]

same here and is going on for at least 18 months now. Can no longer sit or walk for a few minutes without pain. I have to be helped with any tasks requiring hands/arms. Barely do anything myself. Even pressure from clothes creates problems . all my bones are crackling.

And all the muscles circumference measurements are indicating that is getting worse. Highly likely I will be completely disabled.

How long you been off ?

I thought this too.

It isn't the case though, I had severe pain and cracking, I would cry even walking was too hard sometimes because the pain in my back, ribs, it will get better.  I take glutathione and vitamin d with k, I don't know it it helps but it seems to. I have made slot of progress with the pain, it felt like a disease.

18 mos. Noticed the muscle wasting started a couple of months before that while tapering

[[Ma...]]

Mteverest21 you have dystonia?

[[mt...]]

Mteverest21 you have dystonia?

no, at least not according to a couple neurologists I've seen

[Guest [...]]

Mt Everest

 

I know you’re in the Toronto area, do you mind sharing which neurologists you’ve seen?

 

I’ve seen 3, but they were for headaches and such, this muscle wasting is much different and has got me very worried!

 

Thanks a bunch

 

Winniedog