traz23 - help: withdrawal, medication or medical condition?

[traz23]

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, but mostly AD’s. I have been searching for certain answers studying this forum (as well as benzobuddies) 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:

 

1. 1. 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?
2. 2. I understand that my CNS is hypersensitive, but I am not fully grasping why less than 10% updose could trigger such an adverse reaction as I mentioned above. Does it mean that I can’t go up in dosage no matter what, or that I would need to increase dosage extremely slowly? I am puzzled by this, and yes, I have read threads about stabilizing and related .
3. 3. Can one become symptom free, not just stabilized, at a certain dosage, after holding long enough?

 

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 first question (muscle loss leading to so much pain).

Thank you!

[Altostrata]

Welcome. @traz23

 

On 1/27/2023 at 12:29 PM, traz23 said:

Needless to say, I went back down to previous dosage and eventually stabilized later in Dec ’22, holding ever since.

 

Your previous dosage was 29mg? Have the withdrawal symptoms gone away completely?  See Tips for tapering off trazodone (Desyrel)

 

I cannot say if the wasting is related to drug withdrawal. We have had a few people come here and report this, but it could be a coincidence that a physiological ailment emerged while one is tapering a psychiatric drug. 

 

Drugs can cause a wasting disorder. You might research this https://www.karger.com/Article/FullText/448247

 

and https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7370765/

[traz23]

15 hours ago, Altostrata said:

Welcome. @traz23

 

 

Your previous dosage was 29mg? Have the withdrawal symptoms gone away completely?  See Tips for tapering off trazodone (Desyrel)

 

I cannot say if the wasting is related to drug withdrawal. We have had a few people come here and report this, but it could be a coincidence that a physiological ailment emerged while one is tapering a psychiatric drug. 

 

Drugs can cause a wasting disorder. You might research this https://www.karger.com/Article/FullText/448247

 

and https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7370765/

Thank you, Altrostrata

 

My current dosage is 29 mg and has been since Nov '22 and not planning any changes until I hopefully figure out what is going on, per my original post. No other symptoms, really. I've been hoping all this time that my issues would be withdrawal related either benzo or AD.

 

Intriguing links that you sent over, but (un)fortunately I am not on any of those medications or similar. 

[Altostrata]

Most likely, psychiatric drugs have not been studied in conjunction with this disorder, and that is why they are not specifically mentioned. However, other drugs have been implicated.

 

You might do your own research in this area, it's really outside of my job description.

[traz23]

16 hours ago, Altostrata said:

Most likely, psychiatric drugs have not been studied in conjunction with this disorder, and that is why they are not specifically mentioned. However, other drugs have been implicated.

That is so true; who knows what isolated anecdotal reports or otherwise exist but were not made public due to not being deemed relevant/too few.

I guess if I were to ask a Trazodone manufacturer about this potential sideeffect would be a huge moonshot..

 

In the meantime, any thoughts/insight that could help me understand the other two burning questions in my original post, quoted below for convenience? 

1. I understand that my CNS is hypersensitive, but I am not fully grasping why less than 10% updose could trigger such an adverse reaction as I mentioned above. Does it mean that I can’t go up in dosage no matter what, or that I would need to increase dosage extremely slowly? I am puzzled by this, and yes, I have read threads about stabilizing and related .
    
2. Can one become symptom free, not just stabilized, at a certain dosage, after holding long enough?

Thank you!

[HelenR]

On 1/27/2023 at 8:29 PM, traz23 said:

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, but mostly AD’s. I have been searching for certain answers studying this forum (as well as benzobuddies) 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:

 

1. 1. 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?
2. 2. I understand that my CNS is hypersensitive, but I am not fully grasping why less than 10% updose could trigger such an adverse reaction as I mentioned above. Does it mean that I can’t go up in dosage no matter what, or that I would need to increase dosage extremely slowly? I am puzzled by this, and yes, I have read threads about stabilizing and related .
3. 3. Can one become symptom free, not just stabilized, at a certain dosage, after holding long enough?

 

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 first question (muscle loss leading to so much pain).

Thank you!

@traz23 hi, I've just read your post and I wanted to comment on your loss of muscle. I have lost most of my muscle mass and lost 4stone in weight. This has been over the last 4 to 5 months.  I can no longer lay in the bath as it hurts my spine and coccyx. My skin is hanging and wrinkly and looks dreadful. I eat 4 meals a day which is organic and full of veg and protein with no additives. I agree about the nerves being over sensitised as the pains are awful especially in my ribs and back. I haven't started my taper yet as I reinstated Citalopram but this has not been successful. Wishing you the best on your journey.

[traz23]

6 hours ago, HelenR said:

@traz23 hi, I've just read your post and I wanted to comment on your loss of muscle. I have lost most of my muscle mass and lost 4stone in weight. This has been over the last 4 to 5 months.  I can no longer lay in the bath as it hurts my spine and coccyx. My skin is hanging and wrinkly and looks dreadful. I eat 4 meals a day which is organic and full of veg and protein with no additives. I agree about the nerves being over sensitised as the pains are awful especially in my ribs and back. I haven't started my taper yet as I reinstated Citalopram but this has not been successful. Wishing you the best on your journey.

Hi @HelenR,

 

thank you for chiming in. I understand correctly that the muscle that you lost was not due to using Citalopram , but rather coincided with the time when you started altering the medication big time (i.e., switching to Sertraline, adding Diazepam etc.). is that correct understanding?

 

On a side note,  looks like you've been through quite a few of dramatic medication changes over a very short period of time, like myself in fall of 2021. These usually destabilize and sensitize your CNS for the foreseeable future. In my case when I did the 2 week "taper" (75 to 0) of Trazodone,  for a few days,  in September 21, I eventually reinstated by going back closer to the previous dose that I had held for longest before the "taper" (i.e., 50 mg) and that resolved 99% of the symptoms at the time.  I believe you could eventually stabilize after a long hold, but only your symptom pattern can confirm/infirm this. Please be careful about going up in dosage so far out on 5mg, it  might backfire like it did in my case. Going down again is something I would do only when most symptoms ebb and I become comfortable of continuing the taper..

[HelenR]

@traz23

Thankyou for your reply. Yes I reinstated too low but hadn't discovered the wonderful SA site. My symptoms are worsening everyday now. I think I'm going to hold another couple of weeks before I start tapering. 

It's so sad that we resort to searching the internet for help.   "If only" was my daily thought but now I have to be strong and go forward however painful. 

I hope you are now as healthy as you can be 

[traz23]

20 minutes ago, HelenR said:

@traz23

Thankyou for your reply. Yes I reinstated too low but hadn't discovered the wonderful SA site. My symptoms are worsening everyday now. I think I'm going to hold another couple of weeks before I start tapering. 

It's so sad that we resort to searching the internet for help.   "If only" was my daily thought but now I have to be strong and go forward however painful. 

I hope you are now as healthy as you can be 

yes, we only should look forward. it's the only way out of it.

 

i'm not better, but not much worse either. maybe a bit more bedridden. 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, so for now I am dreading to open up the pill container and ingest them. I am trying to hold off of that as long as I can.... I dread adding another pill when I do not know the reason for my issues. 

[HelenR]

Oh I'm so sad to hear you're still suffering. I spent the first 2 to 3 months in bed with gastritis and severe anxiety like I've never experienced before. I started losing weight then which I thought was due to the gastritis but I now have that under control with diet. I believe the most weight loss increased when my withdrawals hit in December . Being bed ridden is actually soul destroying. I'm normally an outdoor person so it came hard to me even though I had the luxury of Netflix!!. I am fortunate at the moment to only spend a couple of days a week in bed when my body just can't cope well and the brain gets too scrambled to stay upright.

I really don't think I could add another drug to the mix but I can imagine if the pain is that unbearable then I would consider it. I really don't envy your decision on the pregabalin.  I do get a lot of pain but I can manage for now. I'm too scared to even touch a painkiller nowadays.

Ive had the pleasure of electric shocks zapping my armpits this week. I feel totally bruised and tender from it, what a delight that is!!

Lots of hot water bottles help with my back and rib pain.

I'm trying to keep active in the home on good days but the energy levels are non exhistent nowadays. I believe my adrenals were exhausted from adrenaline that did not stop for 3 months. 

In the UK we have not got the best of health care but are fortunate to have NHS. My local doctor will not send me for any tests that he feels are "just anxiety" symptoms so I've had to spend most of my savings on home blood test kits to check cortisol etc. Even when my cortisol test came back abnormal ( high evening cortisol) my doctor said it wasn't a problem. I beg to differ as some days I can hardly put one foot in front of the other. I live in a tiny village so switching doctors isn't an option.

Here's to better days soon.

[traz23]

20 hours ago, HelenR said:

Oh I'm so sad to hear you're still suffering. I spent the first 2 to 3 months in bed with gastritis and severe anxiety like I've never experienced before. I started losing weight then which I thought was due to the gastritis but I now have that under control with diet. I believe the most weight loss increased when my withdrawals hit in December . Being bed ridden is actually soul destroying. I'm normally an outdoor person so it came hard to me even though I had the luxury of Netflix!!. I am fortunate at the moment to only spend a couple of days a week in bed when my body just can't cope well and the brain gets too scrambled to stay upright.

I really don't think I could add another drug to the mix but I can imagine if the pain is that unbearable then I would consider it. I really don't envy your decision on the pregabalin.  I do get a lot of pain but I can manage for now. I'm too scared to even touch a painkiller nowadays.

Ive had the pleasure of electric shocks zapping my armpits this week. I feel totally bruised and tender from it, what a delight that is!!

Lots of hot water bottles help with my back and rib pain.

I'm trying to keep active in the home on good days but the energy levels are non exhistent nowadays. I believe my adrenals were exhausted from adrenaline that did not stop for 3 months. 

In the UK we have not got the best of health care but are fortunate to have NHS. My local doctor will not send me for any tests that he feels are "just anxiety" symptoms so I've had to spend most of my savings on home blood test kits to check cortisol etc. Even when my cortisol test came back abnormal ( high evening cortisol) my doctor said it wasn't a problem. I beg to differ as some days I can hardly put one foot in front of the other. I live in a tiny village so switching doctors isn't an option.

Here's to better days soon.

thank you, @HelenR. I feel you when you say it's been soul destroying to be bedridden as I used to be a very outdoorsy person myself. Being active and keeping yourself busy is definitely a good thing. Trying to do that myself whenever I can and how much I can pause.

 

Same here in Canada with the doctors:  I had to go to a naturopath in order to do some GI test, hormone tests and some others, all of which were paid out of pocket with very little coverage from private insurance.

 

Regarding your back and rib pain: what do you mean by using hot water bottles for that?

[HelenR]

@traz23I just fill up my hot water bottle with hot water and put it on my back and use a warmed up wheat bag and place on my front ribs. It's a temporary fix but very soothing. Today has been agonising in the back area. Always flares up on a bad day. I have vegetated on the bed all day today in pain and the usual WD symptoms. Not a good day but I managed to cook a meal so none of us starved!! Just took the cooking slowly as when the pain is severe in my back I can't stand up right for long.

Do you have the rubber hot water bottles in Canada? I'm in the UK so wasn't sure if you called them the same as I do. 

I wanted to reach for the paracetomols today but resisted in case it revs up other symptoms. I'm very phobic of any pain killer nowadays.

I hope you have managed today. I know you are so much worse off than I am . I'm bracing myself for worse symptoms to come when I start a slow taper. 

[traz23]

17 minutes ago, HelenR said:

@traz23I just fill up my hot water bottle with hot water and put it on my back and use a warmed up wheat bag and place on my front ribs. It's a temporary fix but very soothing. Today has been agonising in the back area. Always flares up on a bad day. I have vegetated on the bed all day today in pain and the usual WD symptoms. Not a good day but I managed to cook a meal so none of us starved!! Just took the cooking slowly as when the pain is severe in my back I can't stand up right for long.

Do you have the rubber hot water bottles in Canada? I'm in the UK so wasn't sure if you called them the same as I do. 

I wanted to reach for the paracetomols today but resisted in case it revs up other symptoms. I'm very phobic of any pain killer nowadays.

I hope you have managed today. I know you are so much worse off than I am . I'm bracing myself for worse symptoms to come when I start a slow taper. 

Got it. yes we do have those same hot water bottles here in Canada; I preferred to use something else  in case of lumbar flareups,  which are large gel pads which I warm up in the microwave and then use them with or without a belt wrapped around the areas of interest. However for me, a very hot bath or shower helped with these kind of pains for  maybe 2-3 hours. Now I cannot do baths anymore; I can only take showers so the soothing effect of those is very limited unfortunately.

 

It's funny you mention painkillers such as Tylenol, because I had a very intriguing and disturbing experience just last night: so I've been taking one Tylenol 500mg a night for before sleep for almost a year now. The other day I just decided to quit using that as I don't think it really helps my pains anymore. Because I have used it for so long every single day I thought OK I don't just do this cold turkey but I rather do some sort of taper. And so I decided to take only half of it. Guess what? 1h later I got hit with tinnitus, sweating and crazy itching all over body throughout the whole night without being able to sleep much at all. Crazy! I did not see that coming. I just did some research and it looks like there some medical articles out there suggesting that Acetaminophen might have a serotoninergic action so I figured it might be interacting in one way or another with Trazodone. I guess I will go back to the original dose of Tylenol tonight and see what happens; then maybe attempt some 2-3 months taper. And I thought it was so benign. Looks like no drug is 100% 'safe'...

[HelenR]

Wow I had no idea that something as simple as Paracetamol or Tylenol could mess with seratonin. You can get infant paracetomol which is concerning for the younger generation. I'm glad I held off from taking it.

The gel pads sound great, I may look at the trusty Amazon site and order some. Quicker than keep boiling the kettle every hour of the day.  I'm guessing the pain is due to hypersensitive nerve endings. The first month of having them I assumed it was my gastritis which was quite chronic a while back but I'm managing to keep it at bay with a clean and healthy gluten free diet . Then I thought it was from over exertion as in the earlier days of WDs If I had an odd window of less symptoms I would change the bed sheets and clean the house. Those days are less and less now but the pain is consistent so my theory was challenged again.  I did notice it usually starts when the tension in my head and neck begins . I really cannot be bed bound for too much longer as I'm starting to get sores on the base of my spine where I've lost the muscle and fat!! My god this is so ridiculous, no one believes me when I say I think I'm in WDs from multi medications. They all think I'm just severely depressed and anxious.  My poor mum , who is 84 , doesn't get it at all. Bless her heart she rings me up asking if the pills are working yet. She has the very start of dementia so I just repeat the same thing to her. I haven't seen her for months as I don't want her to see me like this it will upset her.

Oh the joys of this!!

[traz23]

23 hours ago, HelenR said:

Wow I had no idea that something as simple as Paracetamol or Tylenol could mess with seratonin. You can get infant paracetomol which is concerning for the younger generation. I'm glad I held off from taking it.

The gel pads sound great, I may look at the trusty Amazon site and order some. Quicker than keep boiling the kettle every hour of the day.  I'm guessing the pain is due to hypersensitive nerve endings. The first month of having them I assumed it was my gastritis which was quite chronic a while back but I'm managing to keep it at bay with a clean and healthy gluten free diet . Then I thought it was from over exertion as in the earlier days of WDs If I had an odd window of less symptoms I would change the bed sheets and clean the house. Those days are less and less now but the pain is consistent so my theory was challenged again.  I did notice it usually starts when the tension in my head and neck begins . I really cannot be bed bound for too much longer as I'm starting to get sores on the base of my spine where I've lost the muscle and fat!! My god this is so ridiculous, no one believes me when I say I think I'm in WDs from multi medications. They all think I'm just severely depressed and anxious.  My poor mum , who is 84 , doesn't get it at all. Bless her heart she rings me up asking if the pills are working yet. She has the very start of dementia so I just repeat the same thing to her. I haven't seen her for months as I don't want her to see me like this it will upset her.

Oh the joys of this!!

Yes, during taper/WD we get all types of pains stemming from hypersensitive nerves, messed up CNS, stiff/weak muscles etc. It's awful. The only way I managed to keep those sores away for now is to keep the skin dry at all times and change clothes often, and so far it's been fine.
I hear you; it's usually very hard for anyone to believe any of this stuff that we're going through, unless they themselves have gone through it, or someone close to them for that matter. That is why the support here on SA and other boards is priceless. 

Best of health wishes for your mom!

 

[manymoretodays]

  

5 hours ago, traz23 said:

I have a generic question regarding short term use of low(er) dose pregabalin: if only used for a short term such as 10 to 14 days, is there a need to still taper it or can it be stopped cold turkey? If there is a need to taper it after such a short time, what would you guys suggest as a general rule?

 

In my particular case I'm talking about 25 mg 2x/day, but I can say that after 5-6 days or so, there is some physical dependency that had established itself,because I feel some symptoms if there's too much gap between doses. 

 

 

  

41 minutes ago, traz23 said:

I’ve been on it for 9 days now. Your experience with pregabalin sound quite disturbing and scary. 😬

 

Hi @traz23I've routed you back to your Introduction.  I did leave your posts in place back in the Lyrica topic too, so you can scroll back to post one in that topic for help getting non-standard doses to taper that one.  Try and keep most of your posts regarding your situation here on your Introduction topic.  It keeps all your information together and is helpful.

 

Hard to say if dependency has set in after 9 days of pregabalin usage.  It's possible.

Best would be to do a trial taper of 10% off the entire daily dosage, which would then be 22.5 mg twice a day.

If no withdrawal after a week.  You could do another 10% weekly as tolerated.

 

If you are getting WD(withdrawal) from that 10% taper, it's not likely you'll be able to fast taper/FT.

 

Do not just power through if significant WD sets in.  Go back to your regular dosage.  Then proceed with the usual tapering of 10% or less from each previous dose at 4 week intervals, after you have restabilized to your current baseline.   And it does sound like your current baseline is difficult.  I'm so sorry.

 

Do check out medications before using, and interactions.  Drugs.com is a site I like.  If it was me, I sure wouldn't want to be getting into additional drug treatments now.  We are a site for tapering as well.  Not really for members doing drug comparisons or looking to add drugs.  Unfortunate, but we are trying to get more data collected around drug tapering and withdrawal primarily.  Members often do find support systems here in each other though.

 

Wishing you well or some beginnings of healing from what ails.  I hope this helps.

Love, peace, healing, and growth,

mmt

[manymoretodays]

Oh and hey I meant to mention that the half life of Lyrica, from what I read in the topic, is only 6 hours.

And so yes, you might experience some symptoms before your next dose, if it is too long between doses.

Not to say that I wouldn't just get off it if it was me.

Perhaps tell us what those symptoms are.

If they are tolerable, and it was me, I'd proceed to faster taper and leave Lyrica as a short term trial that didn't really help much.

You can do 10% every couple of days if those symptoms are not really interfering with your present quality of existance.

Just don't power through if they are not.

Update your signature here:  Account Settings- direct link to signature  do hit the Save button there once done editing.

[traz23]

Hi and thank you for your insights @manymoretodays.

The symptoms between doses are the more intense twitching's and a little bit of agitation, for now.

 

Unfortunately my already dire situation as described in my original introduction post has become worse and worse despite selfcare, holding Trazodone for several months without etc. My glutes for example, have become so flat, that wiping myself became a messy affair. The only position of relief, lying down in bed I had, has also become sprinkled with pain from the immense muscle loss, and I barely sleep these days which is definitely not helping the situation.  I'm still wondering if the usage of Trazodone (or ADs in general) itself does not cause the mega-slow (over 1 year) of muscle loss through not allowing muscle tissue to repair itself, because it is otherwise not breaking down.  I haven't found much on the Internet, as in medical journals, studies. I've even reached out to pharmaceutical companies but of course, they declined to answer the question of whether or not Trazodone has ever been reported to be linked directly or indirectly to muscle loss So I reached a point where I don't have much left to try or to lose, and I wanted to see if anything helps with the pains and calms the nervous system without resorting to the hardcore opioid or adding other ADs etc., until either a miracle or something else happens.

 

Unfortunately I'm not yet sure if Pregabalin helps yet,  because it's been just over a week now and everybody's saying that I might need to give it more time (more than just 1 week_ but at the same time I am getting into more level the physical dependence which I really really hate especially if it will be proving itself not to be working. My idea one year ago was to taper Trazodone and become medication free eventually, but look like the odds are stacked against me 2000%.

 

[Tom2020]

On 1/27/2023 at 12:29 PM, traz23 said:

Thank you for sharing the list of side effects from taking the medication, fellow Canuck 🙂; when it comes to withdrawal symptoms I reckon they'd be similar to benzo and AD withdrawal which I went through myself. And indeed, it looks like  those side effects are not something easy to ignore and push through treatment with pregabalin, for sure. 

Having read your intro post I see I don't need to tell you how bad withdrawal can be... Chronic pain and muscle wasting must be absolutely awful!

 

I don't know if the same person tends to have the same WD symptoms from different meds. If wonder if there's a consensus on this site. In my case pregabalin WD was very different (and much worse) than my other withdrawals.

 

My own experience was that WD (and post-withdrawal syndrome) was worse than the drug's side effects (pregabalin, quetiapine, SSRIs).

 

One good thing about pregabalin is long-term use is not supposed to result in tolerance, unlike opioids. So if it is tolerable and helpful you could stay on it long term, though I gather the longer on it the harder coming off may be.

 

[manymoretodays]

Traz23,

Ooof.  Again so sorry.

On 3/8/2023 at 9:55 AM, traz23 said:

Unfortunately I'm not yet sure if Pregabalin helps yet,  because it's been just over a week now and everybody's saying that I might need to give it more time (more than just 1 week_ but at the same time I am getting into more level the physical dependence which I really really hate especially if it will be proving itself not to be working.

I don't think we can ascertain completely what has led to what with your muscle wasting and bedrest and then pain with bedrest, and all the rest.

Oh my gosh.

Up to you then, on the Lyrica and if you want to stay on it, knowing that a withdrawal from it will be horrible.  Still under 2 weeks then.......you can try to do a faster taper.  Totally up to you. 

And sorry, we don't have a ready answer for your mysterious illness. 

And I hope you find one.

Unfortunately it's unlikely to be here I think.

Again.......sounds absolutely brutal.  And applause for what you have done with eating and physiotherapy.

 

Thank you Tom2020 for pointing that out anyway. 

21 hours ago, Tom2020 said:

don't know if the same person tends to have the same WD symptoms from different meds. If wonder if there's a consensus on this site. In my case pregabalin WD was very different (and much worse) than my other withdrawals.

 

Sorry to hear that.  Oftentimes not, the same exact WD from different meds.

 

Both of you.  Be still, sending healing.........take a moment and breathe it in.  May your tomorrow be better than today.

 

L, P, H, and G,

mmt

[traz23]

Thank you so much for your kind words, @manymoretodays !

 

Just a note that I wasn't exactly looking to find a clearcut explanation for what's going on in my case; I was more so hoping that there would be any one here that went through such continued muscle loss issues that lead to disabilities OR even more of interest to me now, to see if anyone here experienced muscle loss while taking anti depressants (in general not necessary Trazodone), at a very very slow rate leading eventually to such disabilities.

 

In my case appears as if muscle repair,  muscle growth (protein synthesis?) or other processes have been hindered by medications for 1+ years ... doesn't seem like it's a classic example of muscle wasting issue.

[Tom2020]

Here are two ideas on mechanisms behind your condition, but sadly without any suggestions about how to help. Please note I have no medical background, so take this with as much salt as needed.

 

First, cachexia is a syndrome of muscle loss associated with an underlying illness, whereas I gather sarcopenia is age-related muscle-loss. According to wikipedia, a large range of conditions can cause cachexia, some of which are auto-immune conditions while others have an immune component and some I don't know about. Inflammatory cytokines, a signalling molecule used by the immune system, "appear[s] to play a central role" in cachexia. So there seems to be at least an immune component to cachexia.

 

I have ME/CFS, which is often originally triggered by an infection. It's very similar to long covid, which, as you may know, can affect many different parts of the body. I strongly suspect the strain of bad drug withdrawal can cause (or contribute to causing) to conditions with an autoimmune components, like long covid and ME. When the body is in crisis, the immune system trades speed for accuracy: it rushes out antibodies without spending the usual time weeding out antibodies that react to the body's own tissue.

 

So your withdrawal could potentially have triggered an autoimmune condition which underlies your muscle wasting. If so, you might hope to find abnormal blood tests, but your first post says your inflammatory markers were unremarkable. However, inflammatory markers in ME (and I suspect long covid) are typically unremarkable, so it's plausible the tests we have are just not looking at the right thing. (One of the problems with ME is there's no test for it, although current research seems to be getting close.) If there is an immune component to your condition you might hope immune-modulating drugs would help, but just as there's a lack of useful tests for ME, ME does not seem to respond to available immune therapy, so your condition may not either.

 

The second idea is also a parallel with ME. It's known that severe physical trauma (such as in a car crash) causes major long-term changes in gene regulation (mostly reversed after a year, if I recall) and it's thought that the same might happen with ME. It's known that many drugs also alter gene regulation though not much is known about it. I have a hunch (for what it's worth) that drug withdrawal can cause long-term changes in gene regulation that are responsible for prolonged withdrawal symptoms. So your muscle wasting could potentially be due to altered gene activity. If I recall correctly, gene regulation tends to slowy return to normal on its own over time, which mirrors the experience of the WD community that symptoms tend to gradually improve (sometimes over many years) if you're not further stressing your system. ME also tends to improve but usually only over the first year or two, and there are always ups and downs.

 

I'm just speculating and, again, I have no qualifications.

 

How are you doing today?

 

[traz23]

On 3/10/2023 at 7:24 PM, Tom2020 said:

Here are two ideas on mechanisms behind your condition, but sadly without any suggestions about how to help. Please note I have no medical background, so take this with as much salt as needed.

 

First, cachexia is a syndrome of muscle loss associated with an underlying illness, whereas I gather sarcopenia is age-related muscle-loss. According to wikipedia, a large range of conditions can cause cachexia, some of which are auto-immune conditions while others have an immune component and some I don't know about. Inflammatory cytokines, a signalling molecule used by the immune system, "appear[s] to play a central role" in cachexia. So there seems to be at least an immune component to cachexia.

 

I have ME/CFS, which is often originally triggered by an infection. It's very similar to long covid, which, as you may know, can affect many different parts of the body. I strongly suspect the strain of bad drug withdrawal can cause (or contribute to causing) to conditions with an autoimmune components, like long covid and ME. When the body is in crisis, the immune system trades speed for accuracy: it rushes out antibodies without spending the usual time weeding out antibodies that react to the body's own tissue.

 

So your withdrawal could potentially have triggered an autoimmune condition which underlies your muscle wasting. If so, you might hope to find abnormal blood tests, but your first post says your inflammatory markers were unremarkable. However, inflammatory markers in ME (and I suspect long covid) are typically unremarkable, so it's plausible the tests we have are just not looking at the right thing. (One of the problems with ME is there's no test for it, although current research seems to be getting close.) If there is an immune component to your condition you might hope immune-modulating drugs would help, but just as there's a lack of useful tests for ME, ME does not seem to respond to available immune therapy, so your condition may not either.

 

The second idea is also a parallel with ME. It's known that severe physical trauma (such as in a car crash) causes major long-term changes in gene regulation (mostly reversed after a year, if I recall) and it's thought that the same might happen with ME. It's known that many drugs also alter gene regulation though not much is known about it. I have a hunch (for what it's worth) that drug withdrawal can cause long-term changes in gene regulation that are responsible for prolonged withdrawal symptoms. So your muscle wasting could potentially be due to altered gene activity. If I recall correctly, gene regulation tends to slowy return to normal on its own over time, which mirrors the experience of the WD community that symptoms tend to gradually improve (sometimes over many years) if you're not further stressing your system. ME also tends to improve but usually only over the first year or two, and there are always ups and downs.

 

I'm just speculating and, again, I have no qualifications.

 

How are you doing today?

 

you have very good points here. I have also considered the fact that withdrawals could trigger the onset of new conditions, which is a scary prospect to say the least. There are actually documented cases in the benzo world where withdrawal has triggered the onset of diseases  such as Hashimoto's.

My blood tests so far were unremarkable in that sense. I have just done  an IGF-1 test,  to see if growth hormone has been impacted in any shape or form; now looking forward to getting the results within a week or so.

Unfortunately none of the doctors that I've seen was keen and meticulous enough to consider everything that could possibly be lying under my mystery illness and to perform more investigations then the standard ones that I had already done. Because at this point I feel like I need some sort of detective doctor to sit together with me and think about everything that could have gone wrong and do all sorts of tests and procedures, although potentially shooting in the dark lot.

 

I'm a bit skeptical that it could be an autoimmune condition in my case. Gene mutations? maybe. Nonetheless I'm 99.99% sure this is all due to medications: in hindsight. there were actually a few early signs that something was not exactly right even before the big withdrawals in the fall of 2021. I now recall that: in summer of 2021 I was not able to jog as much without pain in the knees area; in early fall of 2021 I was not able to lift that much weight as I was able to with my arms, without becoming super-sore. These are few examples and comparisons with the time before starting Trazodone and benzos (at the end of 2020). So all of these point to the fact that all these problems could actually have the  presence of the medications as a major contributing factor. The problem now is, that it's hard to tell if it was the benzos or Trazodone, because they were started very close to each other.

I just wish that it's not Trazodone the major contributor here because it would be so impossible to get rid of it quickly if its presence is the issue, or if it's perhaps the tapering of it  because I tried to updose few months ago and I failed miserably. 

 

I feel so awfully stuck because I don't know how and who can find answers as to what to do; the only thing I can do is to continue tapering Trazodone or attempt again to increasing it after ~4 months of holding...

 

 

[Tom2020]

Interesting that benzo withdrawal can trigger Hashimoto's (which, incidentally, is an auto-immune disease). Whatever the mechanism, it does seem *very* likely the medications triggered your condition.

 

I agree you need some kind of detective doctor but sadly if they don't know what to do with you the medical system just seems to let people slip through the cracks. I'm thinking of contacting the Mayo clinic about my bad reactions to vitamins. Can you afford that?

 

Your first post says "Between Dec 2020 and Jun 2021 various dosages have been experimented, going up to 100mg then down to 75mg" Trazodone. Did the muscle pain start before or after reducing the dose to 75mg?

 

Do you have a diagnosis for the nerve pain?

 

You are in an awful bind about what to do with the trazodone dose. I'd be very wary of increasing it and want to get advice first.

[traz23]

 

14 hours ago, Tom2020 said:

Interesting that benzo withdrawal can trigger Hashimoto's (which, incidentally, is an auto-immune disease). Whatever the mechanism, it does seem *very* likely the medications triggered your condition.

From when I was reading about it back then, I recall it has to do with the fact that during benzo withdrawal there's an immense surge of glutamate which has the potential of exciting the neurons to death, eventually leading to all sorts of potential problems.

 

14 hours ago, Tom2020 said:

I agree you need some kind of detective doctor but sadly if they don't know what to do with you the medical system just seems to let people slip through the cracks. I'm thinking of contacting the Mayo clinic about my bad reactions to vitamins. Can you afford that?

I'm having pains after only ~10 minutes of standing or sitting, so any kind of travel is pretty much not an option at this point, which is very frustrating. This is something that I should have done months ago, now it's a bit late. I will probably need to be hauled by patient transport services, lying down, to my future appointments whenever they materialize.  

That being said, I doubt that doctors could call determine whether or not this is triggered by medication. It's so hard to find a doctor that is well versed in psychiatric drugs and their withdrawals, let alone one of that's also a neurologist or rheumatologist.. 
 I think it's a good idea for you to contact them I hope it will be yielding good results for you.

 

14 hours ago, Tom2020 said:

Your first post says "Between Dec 2020 and Jun 2021 various dosages have been experimented, going up to 100mg then down to 75mg" Trazodone. Did the muscle pain start before or after reducing the dose to 75mg?

That reduction took place in March or April 2021. Any of my issues have started becoming noticeable for sure after that. The first ones that I recall, were very subtle like I mentioned in my above post (e.g., I could no longer carry as many grocery bags as before Trazodone&benzos). I did not pay any attention to those early signs at the time; I thought it's maybe because of my very poor sleep. Now, they were evident later that year in fall when I started having the troubles and when I could also notice the shrinkage of the muscles; but that coincided with the withdrawal periods at the same time..

 

14 hours ago, Tom2020 said:

Do you have a diagnosis for the nerve pain?

 

You are in an awful bind about what to do with the trazodone dose. I'd be very wary of increasing it and want to get advice first.

No; the nerve pain usually sets in only after I'm using some muscles and then they become sore, then painful and then I keep pushing through. At that point all the pain not only is muscle pain but also shooting nerve pain which is on and off and can linger for quite a few hours. This includes arms, legs including when sitting, when lifting things or doing repetitive movements with either limb.

 

Unfortunately there's been so many overlaps between Trazodone and benzos so it's very very difficult to tell what's what. It's also challenging to tell whether any of this is still withdrawal; either leftovers from the benzos or related to Trazodone. I'm inclined to say the very little of it is withdrawal because I really don't have any other typical withdrawing symptom besides of super sensitive CNS.

[Tom2020]

Given the timing it does sound like it's the reduction of Trazodone that caused the issues. Being on a steady dose of Trazodone might not be a problem. As you say you don't have other typical withdrawal symtoms so those you do have may not be ongoing withdrawal symptoms. But I suspect withdrawal can cause conditions that take on a life of their own even after the withdrawal itself has resolved. If you get drunk and break your leg it will still be broken long after you sobered up - the break is an independent condition at that point. I guess the bottom line is we can't know for sure what's going on.

 

Maybe the Mayo clinic would see you by phone or video and suggest tests to have done locally, then look at the results and be the detective doctor you need. Lifelabs offers home visits for blood tests in some parts of Canada.

[traz23]

15 hours ago, Tom2020 said:

Given the timing it does sound like it's the reduction of Trazodone that caused the issues. Being on a steady dose of Trazodone might not be a problem. As you say you don't have other typical withdrawal symtoms so those you do have may not be ongoing withdrawal symptoms. But I suspect withdrawal can cause conditions that take on a life of their own even after the withdrawal itself has resolved. If you get drunk and break your leg it will still be broken long after you sobered up - the break is an independent condition at that point. I guess the bottom line is we can't know for sure what's going on.

 

Love your analogy!

15 hours ago, Tom2020 said:

Maybe the Mayo clinic would see you by phone or video and suggest tests to have done locally, then look at the results and be the detective doctor you need. Lifelabs offers home visits for blood tests in some parts of Canada.

Good idea about the video visit; I will look it up to see if anything like that is possible with Mayo Clinic. 

Funny you mention the Lifelabs home visits because I attempted using that few days ago and after I did the booking they called me back and said that they could only do a few of the tests as they lacked the proper storage for the others inside their mobile unit. 

[Tom2020]

Is there a chance you're reacting badly to the supplements you're on? Some people find withdrawal gives vitamins side effects. I get sedated then stimulated and diarrhea.

 

Shame they can't do all the blood tests on home visits. I hope Mayo Clinic works out!

[traz23]

16 hours ago, Tom2020 said:

Is there a chance you're reacting badly to the supplements you're on? Some people find withdrawal gives vitamins side effects. I get sedated then stimulated and diarrhea.

 

Shame they can't do all the blood tests on home visits. I hope Mayo Clinic works out!

I'm out of luck, unfortunately, with Mayo Clinic - they don't do virtual visits for international customers ( at least not anymore).

 

No idea if it's any of the supplements that I'm taking. I don't notice any effects of any kind after ingesting those. Have not even during acute and post acute benzo withdrawals. So, I'm not sure really how vitamins and minerals could contribute to to my particular condition. That is not to say that it's 100% not the case..

[Tom2020]

@traz23 It's a shame Mayo Clinic won't do virtual visits. Thanks for letting me know. There are others who might - Harley Street in London is full of private clinics (in fact Mayo Clinic also have a branch in London). Medical "tourism" is a huge industry now. Singapore has some world-class hospitals and years ago I read Malaysia is a big destination. A lot of their doctors trained and practised in the US before returning home.

 

I'm gad since covid I can talk with my family doctor on the phone instead of going in to see her and when I finally get through the waiting list for the ME clinic in Vancouver I'll do that virtually. I hope virtual care will expand not contract!

 

If you don't notice any reaction it seems less likely the supplements are causing any problems but as you say we can't know for sure. If you're taking a centrum multi and 2400mg fish oil I guess that's about 2500mcg of vitamin A per day. The upper limit is 3000mcg so you're not exceeding that from supplements alone, although if you had liver problems or a genetic susceptibility your tolerance might be lower. Your vitamin C and D would be less than half the upper limits.

[traz23]

14 hours ago, Tom2020 said:

@traz23 It's a shame Mayo Clinic won't do virtual visits. Thanks for letting me know. There are others who might - Harley Street in London is full of private clinics (in fact Mayo Clinic also have a branch in London). Medical "tourism" is a huge industry now. Singapore has some world-class hospitals and years ago I read Malaysia is a big destination. A lot of their doctors trained and practised in the US before returning home.

 

yes, and actually I remember that Thailand is also big in terms of medical tourism (saw documentary about this not long ago).

 

14 hours ago, Tom2020 said:

I'm gad since covid I can talk with my family doctor on the phone instead of going in to see her and when I finally get through the waiting list for the ME clinic in Vancouver I'll do that virtually. I hope virtual care will expand not contract!

Glad that's still the case in BC, because here in Ontario they no longer allow for virtual doctor visits since December 2022 - which I think is horribly disappointing.

[Tom2020]

On 2/16/2023 at 10:19 AM, traz23 said:

yes we do have those same hot water bottles here in Canada; I preferred to use something else  in case of lumbar flareups,  which are large gel pads which I warm up in the microwave and then use them with or without a belt wrapped around the areas of interest. However for me, a very hot bath or shower helped with these kind of pains for  maybe 2-3 hours. Now I cannot do baths anymore; I can only take showers so the soothing effect of those is very limited unfortunately.

 

Is the issue with baths that you're trying to keep your skin dry?

 

It's a real shame Ontario has stopped virtual visits! That's a big step backwards and I hope BC won't follow suit. I had not heard of Thailand being a destination for medical tourism. Part of the appeal of Malaysia for some was spending their post-surgery recovery period in a resort and Thailand could certainly offer that.

[traz23]

15 hours ago, Tom2020 said:

 

Is the issue with baths that you're trying to keep your skin dry?

 

No, the issue is that due to my muscles  issues it hurts immensely when I try to get down into the bath and then get up again, and then those pains would linger for many days. 

 

BTW, I got back the results for my IGF-1 test, in my level is about 15% higher than the normal level, so it looks like i am not lacking growth hormone. So I guess this miserable mystery condition continues..

[Tom2020]

It's a shame the IGF-1 test wasn't more helpful. Would adding growth hormone help even though you aren't low?

 

A friend of mine in England bought a sauna that isn't much bigger than my shower. It's freestanding and basically a wooden box with a bench and an electric heater. Would that work as a substitute for a bath?

[traz23]

14 hours ago, Tom2020 said:

It's a shame the IGF-1 test wasn't more helpful. Would adding growth hormone help even though you aren't low?

 

A friend of mine in England bought a sauna that isn't much bigger than my shower. It's freestanding and basically a wooden box with a bench and an electric heater. Would that work as a substitute for a bath?

That would be very risky as too much GH can cause a lot of other issues/symptoms.

 

Good idea with the sauna!! although I could only sit for max 10 minutes due to pain. there is actually one in my condo but it's currently under repair; so depending how I feel, I could definitely give it a try when it's back in operation.

[Tom2020]

It's great there's a sauna in your building. I think 10 minutes is about all I could stand in one go although I'd have multiple sessions.

 

What about an electric blanket or heating pad? That would be more convenient than warming gel packs in the microwave. I found wirecutter is good for reviews although it can be hard to get the same models in Canada and they always cost more here. Wirecutter also mentions risks of burns and fires https://www.nytimes.com/wirecutter/reviews/best-heating-pad/