Muscle pain support group

I have noticed that my muscles tighten up after a few minutes of being awake - nit that I'm sleeping at all atm - but when I do they are relaxed until my consiousness kicks in properly. I think it's because musclescare basically paralysed for periods during sleep to prevent acting out while dreaming.

 

 

I found this interesting summary of help for inflammation that I though you all mught find helpful?

 

https://www.painscience.com/articles/inflammation-chronic-subtle-systemic.php

 

 

Has anyone tried a ketogenic diet? I am wondering if it is safe during withdrawal. I worry about excitotoxicity and a lack of glucose while in that state is very dangerous.

Interesting, Ajusta. I am thinking of trying a ketogenic diet. I don't love red meat so I think it may be too hard. I tried cutting dairy but so far, no change. Thanks for sharing.

I have noticed that my muscles tighten up after a few minutes of being awake - nit that I'm sleeping at all atm - but when I do they are relaxed until my consiousness kicks in properly. I think it's because musclescare basically paralysed for periods during sleep to prevent acting out while dreaming.

 

 

I found this interesting summary of help for inflammation that I though you all mught find helpful?

 

https://www.painscience.com/articles/inflammation-chronic-subtle-systemic.php

 

 

Has anyone tried a ketogenic diet? I am wondering if it is safe during withdrawal. I worry about excitotoxicity and a lack of glucose while in that state is very dangerous.

 

 

Thanka Ajusta, I found out that Greengirl succeed with veggies and has written about inflamation. Here is link to her page, maybe already known but I desided post anyway.

http://www.benzobuddies.org/forum/index.php?topic=44666.0

 

 

Thanks!

 

There is also a lot of useful info on diet on SSR1975s Success story thread http://www.benzobuddies.org/forum/index.php?topic=194324.0

 

There is also a lot of info on myscle problems on Dr Sarah Myhill's site who is respected by many in the ME/CFS community.

 

http://drmyhill.co.uk/wiki/Category:Joints,_Muscles_and_Bones

Does anyone here have issues with their upper arm muscle....I've started PT cause it's painful to put on a bra or pull off tops...if I bend my arm just certain ways the pain is aweful....almost like frozen shoulder ...but I have good range of motion in shoulder

 

TM

 

Yes I have muscle pain mainly in my arms and shoulders but nowhere else. For me it strange that pain hits only arms and shoulders. Is this typical?

Mine has moved around.  Early out it was horrific in legs, hips, couldn't walk much first year, felt like muscles would tear, and it's happened to a few buddies.  Then after setback with Versed last year it went into upper spine, neck and is still there along with hips at times.

 

These muscle cramps are so bad for me they are making feet/hands go numb from tightness/pressure, it's scary because I have a bad spine already, several surgeries.  If they would go away I would be very functional.  I fight through it to do stuff anyway and wear a tens unit on my spine to try to stop cramping.  Just so sick of it.

 

MG

muscle pain, especially in my neck has plagued me as an ongoing symptom for atleast the past year of tapering. A soft collar gives me lots of relief. You can get one on line at amazon.

Nerve pain in my right hand shoosdown my Arm on and off a few times a day! Haven’t found any relief for that yet. Hope it will finally be gone once I’m free of diazapam. Right now, I’m just learning to live with it all the best I can.

 

Heath

My pain moves around too.  It is mostly in my right shoulder, but after 3 acupuncture appointments, very close together, the pain in my right shoulder finally left.  Then I got a pain in my left shoulder, and then my calves, and now it's back in my right shoulder again. 

Heath cliff, my neck really bothers me too,  what is the name of the soft collar you use?  This last cut, even tho it was barely 3%, really messed with my back and neck.  I hurt all the time.  Thanks

where do i start.

There's a lot more detail than i care to write here but i've literally lost the use of my legs and feet for over a year now. 

 

It started with the swelling of my ligaments around my ankle that finally led to a minor fall with major consequences. 

 

Consequences that didn't fit the bill. A medical mystery if you will.  The doctors don't know what it is yet i was at one point diagnosed with CRPS/RSD which is known as the suicide disease where people afflicted have been known to opt for amputation rather than live with the unworldly pain.

 

The pain moves.  The pain is unclear/weird.  Its severe. 

Areas of pain are the feet, ankles, knee and the newly spine/hip.

Yes, i too hear muscle tearing when i bend my knee in particular and bones and joints coming dislodged.

After a year i would say i am improving but getting worse.  Only on BBs this would make sense.

What do i use for the pain? Advil. Wrapping. Tens Unit. Heating pad.

 

 

Can I ask those with shoulder pain do you ever experience pain in your upper arm ?

 

I went through six weeks of PT on upper arm....the pain is brought on when reaching out or reaching with it certain ways...the pain is pretty bad but only last like a minute or less...but I can't put on my bra the reaching back to fasten it is painful or putting on like coats hurts...anyway I'm trying to avoid doing an MRI on shoulder...but the PT...thinks is partial frozen shoulder ....wondering if it's withdrawal

 

TM

 

Can I ask those with shoulder pain do you ever experience pain in your upper arm ?

 

I went through six weeks of PT on upper arm....the pain is brought on when reaching out or reaching with it certain ways...the pain is pretty bad but only last like a minute or less...but I can't put on my bra the reaching back to fasten it is painful or putting on like coats hurts...anyway I'm trying to avoid doing an MRI on shoulder...but the PT...thinks is partial frozen shoulder ....wondering if it's withdrawal

 

TM

 

Yes I have this. Sometimes pain is in my shoulder and sometimes in my arm. Typically it is my right shoulder and arm, I'm righthanded. In my case it stays longer but comes and goes so it is not permanent. Really strange. I have also noticed that stretching or message soes not give a relief.

where do i start.

There's a lot more detail than i care to write here but i've literally lost the use of my legs and feet for over a year now. 

 

It started with the swelling of my ligaments around my ankle that finally led to a minor fall with major consequences. 

 

Consequences that didn't fit the bill. A medical mystery if you will.  The doctors don't know what it is yet i was at one point diagnosed with CRPS/RSD which is known as the suicide disease where people afflicted have been known to opt for amputation rather than live with the unworldly pain.

 

The pain moves.  The pain is unclear/weird.  Its severe. 

Areas of pain are the feet, ankles, knee and the newly spine/hip.

Yes, i too hear muscle tearing when i bend my knee in particular and bones and joints coming dislodged.

After a year i would say i am improving but getting worse.  Only on BBs this would make sense.

What do i use for the pain? Advil. Wrapping. Tens Unit. Heating pad.

 

I'm sorry you have this. It is something that has been mentioned to me but no official diagnosis.

 

My spine feels it is constantly being dragged out of alignment and it feels like muscles tearing. It's horrible.

 

 

A few weeks ago I hurt my shoulder and couldn't lift my arm up or put it straight down or back. It was a truely horrible pain.

 

Because of everything else I gave in and took 2.5 mg of diazepam which sorted it so it was clearly muscle spasm. It hasn't come back since.

 

The diazepam didn't help any of the other muscle problems I now have.

 

If the pain you have is due to spasm there are other drugs you could take briefly that might release whatever is causing the pain. I know a lot of people find Flexeril helpful (not available in UK). There is also Methocarbamol (it is GABAergic) but for an acute problem where it is only for a few days I think I would take it to prevent it becoming chronic.

Many ppl have taken flexeril with no problems, but tapering off it put me in hell.  Lot's of great suggestions Ajusta. 

 

MG

I know there are people on here who take it now and again when needed and don't have problems. It doesn't work beyond 2 weeks if you keep taking it anyway according to info I have read.

 

Ajusta,

 

Yes, agreed, that's why I said many are here could take it.  Unfortunately I had been on it awhile.  Some are sensitive to anything rx related, me included. 

 

MG

 

 

I know there are people on here who take it now and again when needed and don't have problems. It doesn't work beyond 2 weeks if you keep taking it anyway according to info I have read.

I know there are people on here who take it now and again when needed and don't have problems. It doesn't work beyond 2 weeks if you keep taking it anyway according to info I have read.

 

For general spasms and such, there does not seem to be much benefit after 2 weeks, but for people who have muscle tightness and such, there is still a benefit.  I will say it still works for me after a year, and when I don't take it, my muscles go crazy and my involuntary movements get significantly worse.  I know flexeril is not prescribed much in the UK, but in the US many people stay on it long term - it is often used here for people with fibromyalgia.

I wish it was availsble in the UK. No doctor here seems to be aware of it.

 

If it works like Procyclodine though it won't help me. They gave me a shot of that in A&E on Sunday and it didn't release anything.

one dose (or even a couple of doses) won't loosen things up - it wasn't until I started taking it regularly that I noticed a difference.  When the muscle spasms in my face/head get severe and I go to the ER, even the strong muscle relaxer they give me by IV doesn't stop it right away, I usually have to continue increased flexeril and take norflex before it stops. 

 

Unfortunately in the UK, it doesn't seem like doctors use muscle relaxers very often (not just benzos, but other types as well).

Thanks Dolphinator!

 

Can I ask what you do about it making muscles that don't needcrelaxing too relaxed?

 

Because I have been ill for a long time My muscles throughout my body aren't as strong as they shoukd be. Added to this I have degeneratin throughout my spine and also since withdrawal I have added muscle weakness.

 

When I take the baclofen the muscles I need to be strong to support my spine go too lax but the ones that are really tight and fibrotic stay very tight.

 

I could ask my GP what else she can give me but I don't know what I can do about the other muscles that need all the strength they can get.

 

I saw my chiropractor yesterday and he managed to release someyhing in my mid back which has made it a little easier to breathe for now which is a very good thing indeed.

I read a lot on this support group about muscle issues in arms, and legs and back.  Does anyone else have issues in the upper neck and the head/scalp? I have a cramping feeling (sort of) that goes up the back of my head on one side.  The muscles there feel almost rock hard sometimes.  Then it seems to cause a pain in the back of my head, near the top - or sometimes it refers the pain to the area behind my ear.  There is also often a line of pain and tense muscle at the nape of my neck (on the lowest part of my head).  Anyone else?  Sometimes heat helps a little...sometimes not.

Sometimes cold is better. 

 

Occasionally I will wake up in the night with discomfort in the back of my head (sort of on the surface - not IN my head exactly) that becomes more painful. 

 

And it comes and goes...

All of my neck, head and face muscles have gone solid. It feels like my head is being dragged down through my neck. I can't hold my head up on my neck properly because the tightness is also causing weakness. There is no position of comfort. It feels as if it needs to release right at the top up under the skull to stop my head being pulled back and to the sides. It is a horrible feeling. It oulls my jaw out of alignment and makes me feel constantly concussed. It also feels related to the whooshing sensations in my head and a sense of disequilibium. Nothing helps.

 

I saw my long term physio today who I hadn't seen since this all go very bad. He says all my superficial muscles seem to have turned on and is baffled. Says he's not seen it before. I wish someone knew what is happening and what to do about it.

 

I took some Methocarbamol last night hich seems to help much more than the Baclofen or the Procylodine with some of the muscles.

 

I don't know whether to take that because it is another GABA drug but I simply can't go on feeling like this. The combination of weak and too strong muscles making my head bob around on my spasming neck is just too much.

 

 

 

Has anyone taken Tizanidine? That is available in the UK.

Ajusta, mine is much less significant/widespread/intense than yours - but you have described it well.  My scalp and neck muscles all feel "on" - tensed up. Hard.  Like a solid sheet kind of.

I can be sitting on the sofa and feel it begin to "creep" and tense up across the back of my head and up the left side.  Then it remains that way for some time.  Eventually if it becomes tense enough, then spots of pain begin to hurt (left side, behind ear or top of scalp). Something about it feels "superficial" though...

and again mine is much less intense, but yes, I get what you mean about it sort of feeling like it's pulling down.

 

I will be grateful that mine is so much less intense.  But it's really uncomfortable and anxiety provoking for sure 

 

Yes, my whole back and neck, up into back of head.  The nerve pain from it is excruciating, do you have that?  Sometimes burning, sometimes stinging.  I have spine issues, have had surgeries, so it's a bit scary, my back is not in good shape.

 

MG

 

 

 

I read a lot on this support group about muscle issues in arms, and legs and back.  Does anyone else have issues in the upper neck and the head/scalp? I have a cramping feeling (sort of) that goes up the back of my head on one side.  The muscles there feel almost rock hard sometimes.  Then it seems to cause a pain in the back of my head, near the top - or sometimes it refers the pain to the area behind my ear.  There is also often a line of pain and tense muscle at the nape of my neck (on the lowest part of my head).  Anyone else?  Sometimes heat helps a little...sometimes not.

Sometimes cold is better. 

 

Occasionally I will wake up in the night with discomfort in the back of my head (sort of on the surface - not IN my head exactly) that becomes more painful. 

 

And it comes and goes...

Heathcliff, hate to ask u again, I bought a neck collar off Amazon but it was anything but soft.  Do you know the brand you bought.  My neck hurts a lot of the time