Muscle pain support group

[[Tr...]]

To both ladies,  does the pain ease during the day or does It stay at the same level 24/7? Mine starts on waking up,  gets a little better during the rest of the day and is quite mild once evening has come. I do gentle stretching,  have no idea wether it helps or not. A warm pad does help a bit as does moving about gently. Pain sucks out most of my energy. Let's hope better times are coming soon. 

[[Ma...]]

To both ladies,  does the pain ease during the day or does It stay at the same level 24/7? Mine starts on waking up,  gets a little better during the rest of the day and is quite mild once evening has come. I do gentle stretching,  have no idea wether it helps or not. A warm pad does help a bit as does moving about gently. Pain sucks out most of my energy. Let's hope better times are coming soon. 

 

My pain eases sometimes during parts of the day, and once in bed at night, all warmed up, helps it during the night.  .  It does suck out your energy, totally agree.  .  A day at a time Troch, we make it through  .  Mary 💜💜💜

[[Tr...]]

Hi Mary, on days like today it's even one hour at a time. Hope your day is OK. Mine is almost over, May the evening please bring some relief.

[[Ma...]]

Hi Mary, on days like today it's even one hour at a time. Hope your day is OK. Mine is almost over, May the evening please bring some relief.

 

I hope so too Troch !!    💜💜

[[Aj...]]

Had a myofascialrelease massage of neck head and jaw earlier and one side of jaw let go.

 

Unfortunately as soon as took clin dose all joints collapsed and jaw went out and feels horrific again.

 

Don’t know if once off if she will be able to release more problematic areas where vertebra are pushed forward so hard to release or about surgery site but at lease it can help some things.

 

Very specific form of massage.

[[Ma...]]

It definitely can take a few times to get something to stay released, I hope it works for you Ajusta, you deserve a break.  Mary 💜💜

[[Aj...]]

Don’t think it will until off Clonazepam. Taking it makes all muscles go flaccid and joints collapse in all areas where rigidity got very bad before last reinstatement.

Problem is as dose gets lower get to a point where can’t find bearable position and can’t get in car or lie on massage table.

[[Ma...]]

Don’t think it will until off Clonazepam. Taking it makes all muscles go flaccid and joints collapse in all areas where rigidity got very bad before last reinstatement.

Problem is as dose gets lower get to a point where can’t find bearable position and can’t get in car or lie on massage table.

 

I am in no way in as bad a shape as you are in, but in one way, I work at releasing and it can work for awhile, but pretty much, comes right back. I totally believe it's the benzo.  I keep moving just to keep my muscles moving, but really don't have any faith the muscle pain is going away after 2 years of pt, physio, massages, yoga.....blah blah blah....but here's hoping for all of us in this pain I am wrong and one day be proven wrong  :lsmitten:

[[Aj...]]

It is not so much the pain and the contracture I need to go away.

 

This form of massage is very specific:

https://www.myofascialrelease.co.uk/about-mfr/

 

It is not graston etc.

 

The woman who treats me has ME and lots of scar tissue etc. She has to spend 4 hours releasing her own body every morning before doing anything but is able to work from home, travel etc.

 

 

I know from when was on diazepam if certain joints in mid back and neck release everything does but only ever lasted 2 days max since 2001.

 

Neuro thinks it is dystonia... not sure I agree.

 

Try to move as much as can but as dose gets lower literally can’t make legs muscles ve - brain can’t find them and whole body is rigid.

 

Wish I could eat my lovely healthy Dr Wahl diet I did before WD. I was pain free for first time in decades on that.

 

 

If you have pain but not tightness you might want to read these:

 

Teach Us to Sit Still - Tim Parks

 

Heal Me by Julia Buckley

 

The Pain Chronicles by Melanie Thermstrom

 

 

I read those before WD Troy g to FND way out but mine is weird issue.

 

 

 

Another option if in USA is this woman:

 

Not sure my body could cope with that but she is very thorough...

 

[[Ma...]]

It is not so much the pain and the contracture I need to go away.

 

This form of massage is very specific:

https://www.myofascialrelease.co.uk/about-mfr/

 

It is not graston etc.

 

The woman who treats me has ME and lots of scar tissue etc. She has to spend 4 hours releasing her own body every morning before doing anything but is able to work from home, travel etc.

 

 

I know from when was on diazepam if certain joints in mid back and neck release everything does but only ever lasted 2 days max since 2001.

 

Neuro thinks it is dystonia... not sure I agree.

 

Try to move as much as can but as dose gets lower literally can’t make legs muscles ve - brain can’t find them and whole body is rigid.

 

Wish I could eat my lovely healthy Dr Wahl diet I did before WD. I was pain free for first time in decades on that.

 

 

If you have pain but not tightness you might want to read these:

 

Teach Us to Sit Still - Tim Parks

 

Heal Me by Julia Buckley

 

The Pain Chronicles by Melanie Thermstrom

 

 

I read those before WD Troy g to FND way out but mine is weird issue.

 

Thanks for the suggestions, will check out on Amazon 

[[va...]]

Hi guys. I know you're hurting and I just want to send my love to all of us here today.

 

Troschetter, to your question, I wake up in agony and get better as the day progresses. In the morning I can't even lean to wash my face so I just shower again even if I showered the night before, just to wash my face standing.

[[va...]]

Ajusta I feel bad complaining because I know you're really in so much pain. I hope something helps you.

[[...]]

Oh valiumnomore, I know how it is. I haven’t been able to sit or bend since starting taper over a yr ago. I have to stand to eat, not able to pull my pants and shocks on. Only position is complete straight as all my joints neck, spine hips are completely locked.

 

When did it start for you? I’m shocked you feel that bad even with 2.5mg Valium

[[va...]]

4 mom hi. I'm so sorry it's that bad for you. I can sit and bend. In the morning I can bend with much much difficulty. I can sit though. As the day progresses I can bend more. I think you have it much worse but I hope it gets better for all of us.

[[...]]

Good to hear you are not as bad as me valiumnomore!

 

Due to the whole body numb and rigidity, I haven been stuck in bed all time for 15 months only can get up for a quick minute or so as standing up makes the whole upper body pulling down and I wouldn’t be able to hold up. For over a year, I was not able to roll my feet, or bend my knees lying in bed, they are all locked and hard like stone until couple months off the drug.

 

My initial Valium dose was 2.5mg. This extreme insane rigidity started when I fast cut down to 1mg and got worse over time.

 

The rigidity and contraction moves around, entire back of me, left side or right side including head, up and down around the spine, hips, legs etc, lately it spread my inner organs too.

 

It usually gets less intense in late evening to a point I can stand for a bit longer, but never able to bend.

 

I would never think a tiny dose for a short time can cause such unbelievable physical damage.

[[Ma...]]

Oh valiumnomore, I know how it is. I haven’t been able to sit or bend since starting taper over a yr ago. I have to stand to eat, not able to pull my pants and shocks on. Only position is complete straight as all my joints neck, spine hips are completely locked.

 

When did it start for you? I’m shocked you feel that bad even with 2.5mg Valium

 

Oh 4mom, that must be horrible.  I am so sorry.  I started hurting when I was in tolerance only then didn't know what it was, and it has been here since.  I can say, that was like 3 years ago, this Feb , I had a three week window and the pain level went way down.  I keep hoping for that again.  I can't imagine what you are going through.  Sending you love and healing thoughts.  Mary 💜💜

[[...]]

Thank you mary55 for your kind words!

 

Honestly I don’t know how I endured each day and minute for that long and still am alive. The muscle stuff is only one part of my sx, the most excruciating painful all over pins and needles, complete loss of cognitive and various types of parathesia sensations are as crushing and disabling.

 

When the muscle contraction is unbalanced, I have the violent dystonia head, neck, back leg and even my feet.

 

Totally crippled inside out head to toe.

 

Only area that is not bad is mental sx, no obvious anxiety or depression except for physical sx induced agony , desperation and Akathisia sometimes.

 

I hope your journey to freedom is as smooth as possible.

 

4 mom

[[va...]]

4 mom, I hope now that you're off the drug you'll heal little by little. Have you noticed any progress whatsoever being off the drug since July?

[[Tr...]]

Hello ladies, these stories are just too horrible to imagine. I feel so sorry for you all. This makes my pain and tightness peanuts.

I hope you may all find relief soon. It's too sad for words, what some of us have to go through. Hope your sleep was painfree and your day bearable. 

[[Cu...]]

Hi health. Mine certainly do. Although it could be from my Fibromyalgia as well. Or both... In any case,  my muscles hurt a lot. The pain is also in my bones. Muscles are stiff as a board, with decreasing strength. Anxiety about it being something really bad makes it all even worse. I still manage to go for a short walk most every day, but it's getting harder to do in the colder, wetter weather we're having now.

 

I had pre-existing fibromyalgia from about 25 years ago.  My physical agony began @ around mo. 8 of a 10 month taper & has not let up.  Ever worsening post-jump.  I'm @ the point that I am thinking the ativan did work as pain management.  I wasn't prescribed it for the fibro. but another painful condition @ later date.  The fibro. in years earlier, I'd had 2 separate cycles of trigger point injections w/concomitant physical therapy.  Throughout those years, monthly massage & if masseuse was educated w/stretching techniques, even better.  Also tried acupuncture (didn't care for the needles being turned in ankles/hurt; felt I tensed up prior to the treatment...suggested they staff w/masseuse, for that reason!) + took arthritis pool exercise class - @ the time, was probably close to half the age of the other participants.  That was helpful. 

 

I really don't know where to turn w/all this pain.  Muscle, trigger points, knee arthritis (have had 2 cycles of hylan synvisc injections in past), neuropathy (particularly bad in feet)-not diabetic, hip pain bad...wondering if sciatica is now also present, too.  I can only be mobile for short bursts of time & then need to sit or lay down.  Sometimes when I walk, a knee will sort of "go-out", or lock, just temporarily, a wobbly sensation.  Left shoulder/scapula region another bad area.  It seems that whatever parts of my body ever had injury or hurt in past, is what's hurting worst now, leading me to come to the conclusion that the ativan did block pain receptors, so how do I live now? 

 

Currently, I alternate between lidocaine ointments, biofreeze, and using a dental anesthetic which I got online, over the parts of my body which ache...about 1/3 of my body.  When I'm in chair to watch tv, usually have 2-3 ice packs on.  Not living.  I'm, basically, a debilitated (perhaps, even, disabled or on the way) recluse, now.  Can't take ibuprofen, b/c have had ulcer.  Retaining water, too.  Ankles & feet swollen.  I've been freezing for the last 2 months.  I guess that's the benzo-flu.  I distract myself w/online games & talk to loved ones via phone, but this is no life.  My days are not bearable, they're simply time, in pain, to be gotten through..to try to fill.  It's been so long now, since I actually was living, I don't know if I'll ever have that ability again.  On top of the pain, there's the tolerance sxs of anxiety & agoraphobia, which continue.  Neither was ever an issue for me.  I was gregarious, self-confident & outgoing.  I feel ruined, like a very bad science experiment.  I'd had many years of laparoscopies & 2 laparatomies, along w/other less invasive gynecological procedures, for endometriosis & infertility w/fertility meds & treatments.  No resultant pregnancy/birth.  Mom worried what I was doing to my system w/all of those medications. Husband was "We'll do it as long as you want/we'll stop whenever you want."  My rock.  Stepping up & giving me the injections & he was good! (Never hurt & he never needed to practice on a piece of fruit, either!  Although from all of 'em-in certain parts of the month, there would be 3 injections-there were times I would be black & blue...actually, the area of my hip which is now currently hurting me.)  7 years of both turning on & turning off hormones.  The fertility drugs would make the endo. worse, so it would be 6 months of hyper-stimulation + 6 months system shut off/no estrogen or progesterone= no periods, w/the surgeries in between.  However, I wouldn't change any of it.  I never wanted to reach a certain age & look back w/any regrets & I haven't.  But, in present state, there's no looking forward either; there's not even any comfort in being in present.  Initially, during & @ jump, I was very proud of myself... However, since, any sense of accomplishment at completing taper & jumping, has been obliterated by the pain, b/c anything & everything is obliterated by it.  I fear I'm going to be one of those who lives w/PAWS; that I'll be in the 8+ years.  I'm no longer young; I don't know that I will survive to the other end.  I'm sorry to go on, here.  At this rate, in another 2 months I'll be on the protracted forum, anyway.   

 

Don't trust doctors anymore.  Worst part is that w/d sxs mimic other illnesses/disease.  The only way you know is through tests.  I'm tired of doctors/medicine.  I feel they've ruined, more than helped me.  TBH, I'm also tired of being in the healthcare system.  I'd suspected even during it, that since I was having so many illnesses, surgeries & treatments, that would not hold me in good stead, for later in life...  That since I spent younger years in it, I would feel "done" w/it when most people require it most...old age.  From everything I read here, they don't seem to acknowledge that what anyone is presenting with is due to w/d, even when their tests come back negative.  I don't even have a doctor anymore, nor am I functional enough to be running about looking for a new one & going from test to test.  My latest thought is to find in-home care & even then from a Physician Assistant (that's how averse I am now, to doctors).  Just so I can have blood-work done.  But, if this is the fibromyalgia being worsened from no ativan in system, then I need a new plan & I'm going to have to go out, in order to see a physiatrist (pain management dr.) &/or rheumatologist, as I highly doubt specialists do in-home visits /treatments.  It's catch-22 b/c I'm in too much pain to get myself together to even attempt that. 

[[Tr...]]

Wow, Cuzkk,  This leaves me almost without words. I feel so sorry for you. It makes my problems look tiny and almost non-existing.

 

I hope and pray you may find some relief from this ordeal soon!

 

Please don't give up. Keep the hope alive things will get better for you!

 

God bless. 

 

Wishing you a Merry Christmas. And if possible,  one without too much pain.

[[Aj...]]

Hi health. Mine certainly do. Although it could be from my Fibromyalgia as well. Or both... In any case,  my muscles hurt a lot. The pain is also in my bones. Muscles are stiff as a board, with decreasing strength. Anxiety about it being something really bad makes it all even worse. I still manage to go for a short walk most every day, but it's getting harder to do in the colder, wetter weather we're having now.

 

I had pre-existing fibromyalgia from about 25 years ago.  My physical agony began @ around mo. 8 of a 10 month taper & has not let up.  Ever worsening post-jump.  I'm @ the point that I am thinking the ativan did work as pain management.  I wasn't prescribed it for the fibro. but another painful condition @ later date.  The fibro. in years earlier, I'd had 2 separate cycles of trigger point injections w/concomitant physical therapy.  Throughout those years, monthly massage & if masseuse was educated w/stretching techniques, even better.

 

I really don't know where to turn w/all this pain.  Muscle, trigger points, knee arthritis (have had 2 cycles of hylan synvisc injections in past), neuropathy (particularly bad in feet)-not diabetic, hip pain bad...wondering if sciatica is now also present, too.  I can only be mobile for short bursts of time & then need to sit or lay down.  Sometimes when I walk, a knee will sort of "go-out", or lock, just temporarily, a wobbly sensation.  Left shoulder/scapula region another bad area.  It seems that whatever parts of my body ever had injury or hurt in past, is what's hurting worst now, leading me to come to the conclusion that the ativan did block pain receptors, so how do I live now? 

 

Currently, I alternate between lidocaine ointments, biofreeze, and using a dental anesthetic which I got online, over the parts of my body which ache...about 1/3 of my body.  When I'm in chair to watch tv, usually have 2-3 ice packs on.  Not living.  I'm, basically, a debilitated (perhaps, even, disabled or on the way) recluse, now.  Can't take ibuprofen, b/c have had ulcer.  Retaining water, too.  Ankles & feet swollen.  I've been freezing for the last 2 months.  I guess that's the benzo-flu.  I distract myself w/online games & talk to loved ones via phone, but this is no life.  My days are not bearable, they're simply time, in pain, to be gotten through..to try to fill.  It's been so long now, since I actually was living, I don't know if I'll ever have that ability again.  On top of the pain, there's the tolerance sxs of anxiety & agoraphobia, which continue.  Neither was ever an issue for me.  I was gregarious, self-confident & outgoing.  I feel ruined, like a very bad science experiment.  I'd had many years of laparoscopies & 2 laparatomies, along w/other less invasive gynecological procedures, for endometriosis & infertility w/fertility meds & treatments.  No resultant pregnancy/birth.  Mom worried what I was doing to my system w/all of those medications. Husband was "We'll do it as long as you want/we'll stop whenever you want."  My rock.  Stepping up & giving me the injections & he was good! (Never hurt & he never needed to practice on a piece of fruit, either!  Although from all of 'em-in certain parts of the month, there would be 3 injections-there were times I would be black & blue...actually, the area of my hip which is now currently hurting me.)  7 years of both turning on & turning off hormones.  The fertility drugs would make the endo. worse, so it would be 6 months of hyper-stimulation + 6 months system shut off/no estrogen or progesterone= no periods, w/the surgeries in between.  However, I wouldn't change any of it.  I never wanted to reach a certain age & look back w/any regrets & I haven't.  But, in present state, there's no looking forward either; there's not even any comfort in being in present.  Initially, during & @ jump, I was very proud of myself... However, since, any sense of accomplishment at completing taper & jumping, has been obliterated by the pain, b/c anything & everything is obliterated by it.  I fear I'm going to be one of those who lives w/PAWS; that I'll be in the 8+ years.  I'm no longer young; I don't know that I will survive to the other end.  I'm sorry to go on, here.  At this rate, in another 2 months I'll be on the protracted forum, anyway.   

 

Don't trust doctors anymore.  Worst part is that w/d sxs mimic other illnesses/disease.  The only way you know is through tests.  I'm tired of doctors/medicine.  I feel they've ruined, more than helped me.  From everything I read here, they don't seem to acknowledge that what anyone is presenting with is due to w/d, even when their tests come back negative.  I don't even have a doctor anymore, nor am I functional enough to be running about looking for a new one & going from test to test.  My latest thought is to find in-home care & even then from a Physician Assistant (that's how averse I am now, to doctors).  Just so I can have blood-work done.  But, if this is the fibromyalgia being worsened from no ativan in system, then I need a new plan & I'm going to have to go out, in order to see a physiatrist (pain management dr.) &/or rheumatologist, as I highly doubt specialists do in-home visits /treatments.  It's catch-22 b/c I'm in too much pain to get myself together to even attempt that.

 

Diazepam was definitely a potent pain med for me. I was on it for muscle problems after spinal injury and surgery. Without it every muscle in my body is contracted and pulling joints out. No position is bearable as dose gets lower. Reinstated 3 times but terrible paradoxical effects now.

 

Not sure if have fibromyalgia. Was diagnosed with it in WD but had ME/CFS diagnosis since 1996 and have hypermobility Syndrome and DDD, osteophytes, vertebrae fused in wrong position.

 

All muscles so contracted feel like tight rubber.

 

PM me if you want.

[[Cu...]]

Thank you for addressing me & offer of PM.  I was actually going to delete my post.  I didn't want it to frighten anyone.  I typically hold back that kind of stuff ...I'm always torn between wanting to share & feeling apprehensive about it, too.  I don't usually succumb to any self-pity, nor share so much personal information.  While I am a bit embarrassed,  that's least of all this.  And, even if some read it & think, w/relief, at least my trevails maybe aren't so bad, after all, that would make me feel good, that I've helped someone feel better about their lot.  B/C even w/what I've been given, I always think of others' in worse situations & that things could always be worse.  I guess it's just yet another Christmas holiday season I'm not able to participate in, triggered it.  All I have to do is look in a mirror to see how much time is passing me by.  I'm just so tired & depleted.  While I know, from illnesses sometimes preventing me from life, it was usually cyclical, or with some end in sight.  This is different & just wide-open, w/no clear path or answers, nor any real viable place to turn.  While I do miss life, so much,..even more, I miss me.

 

(Merry Christmas) 

[[Tr...]]

Cuzkk,  It feels good to get things off your chest every once and a while. Good of you to do so!

Hope you enjoy Christmas anyway.  Don't let the Fibromyalgia and benzos take that from you.

 

Merry Christmas.

[[Cu...]]

Cuzkk,  It feels good to get things off your chest every once and a while. Good of you to do so!

Hope you enjoy Christmas anyway.  Don't let the Fibromyalgia and benzos take that from you.

 

Merry Christmas.

 

Thank you.  I will.  I remembered enjoying the Harry Connick Christmas special.  Saw him in concert twice.    Ordered it last week on DVD (arrived yesterday) & while I'm tired of seeing Christmas specials, that's one that I will enjoy & will view either tonight or tomorrow.  I also ordered a couple of other concert DVDs.  This is what I've taken to doing, to watch concerts @ the holidays, to make them special.  (I watch concerts throughout the year...some numerous times, as I have a lot of 'em & some on bootlegs, too.  But, I'll watch more "entertainer-based" concerts/lots of production values, costumes, etc. @ the holidays.  (I'm going mum now; don't want to derail thread.  )