mteverest21 - help: withdrawal, medication, or illness?

First of all, thank you to this great community for I learned a lot and has helped me throughout my withdrawals journey and avoiding some disasters.

 

My story spans across the realms of both benzos and AD’s. I have been searching for certain answers studying this forum (as well as SA) for over a year now but I was not really able to relate enough to my current predicament. Therefore, I would like to share my story and ask a few specific questions (at the very bottom) hoping to get some insight from fellow members who can relate to this situation. This would be of tremendous help, as the situation has gotten so bad that I am very close to needing to be admitted and potentially be misdiagnosed and drugged with who knows what.

Most of this post is being written under dictation due to my physical condition, so apologies for any lack of fluency or otherwise.

 

Started Trazodone 50mg in Dec 2020 for insomnia. I also have sleep apnea. Between Dec 2020 and Jun 2021 various dosages have been experimented, going up to 100mg then down to 75mg. From Feb 2021 to Sep 2021 I had been taking Zolpidem 5-10mg approx. 3 times/week. In Sep 2021 my dr wanted me off Trazodone and went to 0 over the course of 2 weeks. That was obviously a disaster. At the same time dr decided to alternate Zolpidem with Zopiclone 7.5 mg every 2 weeks. Started that at the same time as the Trazodone “taper”; reinstated Trazodone 50mg after 5 days. Situation got close to “normal” in a few days. After a couple of weeks when the next switch from Zopiclone to Zolpidem occurred hell broke loose. I entered severe withdrawal. 2 weeks of useless dr visits, ER visits with help of communities such as this, I understood for how long I have been subjecting myself to tolerance, interdose and regular withdrawals from both benzos and AD.

I crossed over to Diazepam in Nov ’21, eliminating Zolpidem and Zopiclone. In the meantime, at the same time, I started proper, slow taper of Trazodone. Not the best idea to do it at the same time, I know. The taper of Trazodone was sliding scale of 5-10% over each 6 weeks period. Diazepam was tapered to 0 until Jan ’22. When I was done with the benzos I was on approx. 40mg Trazodone which I held for another extra month. Almost too good to be true, I did not suffer from any significant withdrawal after ending Diazepam. I had residual relatively mild symptoms until April ’22. I have slowly continued tapering Trazodone down to approx. 29 mg, dosage I reached in Nov ’22. Until 35mg symptoms were mild with each cut, mostly few bad nights, muscle twitching, elevated anxiety. Then it started to become more and more difficult, symptoms being more pronounced and taking longer to stabilize. The last drops from approx. 32 mg to 29 mg the symptoms of insomnia, muscle twitching, limb jerks, sweating were not stabilizing as quickly as they used to over 1-2 weeks. After waiting 3 weeks for more stabilization, I decided to updose 2mg and taper even more slowly. As soon as I tried updosing, I had immediate adverse reaction mimicking serotonin syndrome: tremors, sweats, tinnitus, diarrhea, dizziness. Needless to say, I went back down to previous dosage and eventually stabilized later in Dec ’22, holding ever since. My idea was to reach the milestone of 25mg, but because of my bigger issues I will mention below, I am not able to continue tapering at the moment.

 

Now this is my urgent huge, and unexplained issue: 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.

 

That is my very long story. Hoping some of 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? (I was not able to find answers myself to any of these despite studying countless forum threads and articles about muscle loss/issues related to withdrawal or mediation itself) Or could it be a medical condition unfortunately not yet identified that might have been triggered by any of the withdrawals?

 

I am hopeful that the community will find time to read my story and help with relatable stories and provide insights/advice for me to understand the potential origin and course of action pertaining to my question (muscle loss leading to so much pain).

Thank you!

 

Hello mteverest21, welcome to BenzoBuddies,

 

When I was reading your story it struck me that what you described happening to you in Dec 21 fit perfectly with benzo withdrawal symptoms because you made the cross from the Zolpidem and Zopiclone in November and muscle symptoms, twitching, jerking, stiffness are all common symptoms but not the muscle wasting unless you’ve become completely bedridden. 

 

I’ve never seen anyone react like you have to Trazadone, I know its an A/D but it seems like most of our members use it in the lower doses as a sleep aid rather than an A/D and 50 mgs is a low dose.

 

I have no idea what has caused your terrible affliction but we have a lot of members and it’s amazing to see them chime in with similar experiences just when you think there is no way this could be caused by a medication. 

 

Please feel free to post on any of the various boards to get suggestions from our other members, hopefully someone will have some input for you.

 

We’re glad you’re here and hope we can help you find answers.

 

Pamster

 

The Ashton Manual

 

Post-withdrawal Recovery Support

Hello mteverest21, welcome to BenzoBuddies,

 

When I was reading your story it struck me that what you described happening to you in Dec 21 fit perfectly with benzo withdrawal symptoms because you made the cross from the Zolpidem and Zopiclone in November and muscle symptoms, twitching, jerking, stiffness are all common symptoms but not the muscle wasting unless you’ve become completely bedridden. 

 

I’ve never seen anyone react like you have to Trazadone, I know its an A/D but it seems like most of our members use it in the lower doses as a sleep aid rather than an A/D and 50 mgs is a low dose.

 

I have no idea what has caused your terrible affliction but we have a lot of members and it’s amazing to see them chime in with similar experiences just when you think there is no way this could be caused by a medication. 

 

Please feel free to post on any of the various boards to get suggestions from our other members, hopefully someone will have some input for you.

 

We’re glad you’re here and hope we can help you find answers.

 

Pamster

 

The Ashton Manual

 

Post-withdrawal Recovery Support

 

Thank you. Silly question re posting in other subforums to draw attention from other buddies: is there a limitation, or can I just take the whole intro and create a topic based off of it? (since I believe all info is relevant)

You are welcome to re-post your whole intro. But I just want to add that most people in withdrawal struggle to read through lengthy posts, so if you can make it shorter you might attrack more replies. I know if I'm having a bad day and I see too much words, I just skip it altogether because it's too much for my brain.

I have all these symptoms..

 

Since long time….

 

Mascha