Muscle pain support group

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I mostly have this in my sides and lower back. I try to avoid triggering the pain feeling like u as well. The rest of my muscles have literally dissolved. I can hardly walk. The only posture I can actually tolerate is laying down. Sitting is too painful. The only thing I found relieves some pain is heating pad.

I can’t really maintain good posture when I try to stand my back needs to be curved a bit to avoid pain.

 

I know exactly how it feels for you. I'm sorry you were harmed in this area as I don't recall you complained it in your earlier stage.

 

When did it start for you?

Mine most excruciating muscle sx is the dystonia type as the entire half of me, sometimes left oand others right side pulls so hard twisting my head, face, neck shoulder and back to a spiral. When the pulling is even, I found I can bear it a bit more.

 

It is one of the main reason I have been in bed most of the time, although other sx can make me too sick to be out of bed.

 

8+ months off, my legs are a bit loosened up but upper body got so much worse. Was not able to bend at all to pull my pants up until month 6, but now cant put shirts on due to excruciating arm pain. It seems the muscle sx traveled from bottom to top.

[[Pt...]]

I mostly have this in my sides and lower back. I try to avoid triggering the pain feeling like u as well. The rest of my muscles have literally dissolved. I can hardly walk. The only posture I can actually tolerate is laying down. Sitting is too painful. The only thing I found relieves some pain is heating pad.

I can’t really maintain good posture when I try to stand my back needs to be curved a bit to avoid pain.

 

I know exactly how it feels for you. I'm sorry you were harmed in this area as I don't recall you complained it in your earlier stage.

 

When did it start for you?

Mine most excruciating muscle sx is the dystonia type as the entire half of me, sometimes left oand others right side pulls so hard twisting my head, face, neck shoulder and back to a spiral. When the pulling is even, I found I can bear it a bit more.

 

It is one of the main reason I have been in bed most of the time, although other sx can make me too sick to be out of bed.

 

8+ months off, my legs are a bit loosened up but upper body got so much worse. Was not able to bend at all to pull my pants up until month 6, but now cant put shirts on due to excruciating arm pain. It seems the muscle sx traveled from bottom to top.

 

I know, earlier on the intense mental torture consumed my entire energy, even though I had back pain, but it seemed to have gotten worse. This muscle issue started couple months ago. It just feels like damage is progressive. Like somehow the glutamate imbalance is continuing to damage my cells and body. I wasn’t couchbound earlier on, I could walk way more than I can now.

 

Sorrry u are suffering too in this way, but it sounds like u are making some improvement? What other symptoms do u have now?

 

Getting out of my couch to go pee is like asking a normal person to run a lap. It’s so tiring, dealing with pain and fatigue.

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I have too may other sx on top of the muscle stuff-- contraction, spasm, cramp, pain, weakness head to toe.

 

Neuropathy: pins and needles, numbness, burning, all are extreme and allover

 

Cognitive: lost the very basic functionality like sorting out dinner ware

 

Motor impairment: allover, lost corrdination with hands, legs, feet, body etc. Due to both muscle and wrong nerve signal

 

Many more that are not as disabling more just torturous, daily ear pain, head pain, tinitus comes and goes, rashes, blurred vision, tailbone pain, arthritis allover

 

 

[[Pt...]]

I share your cognitive and motor stuff. When I walk, my legs are both weak and spastic, like the signals are coming from outer space, not my own brain. It’s madness.

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Every part of my body feels very strange and distressing not my own, with mixed feeling of numb, burning, pulling, rigid, pain, pressure, feeling like to tear it off.

 

You don't have the neuropathy stuff, right? Driving me crazy.

[[Pt...]]

The first part of your post is exactly how I feel,

Except mine is combination of temperature issues (sudden sweat, sudden cold), rigidity, pain, heavy feeling like my arms and legs and head weighs a ton, muscle feeling like it’s being ripped apart. I just feel like I’m constantly living in a body that’s about to die right this second.

 

I don’t have the pins and needles like many have, but I have nerve pain on my back. The entire spinal cord and the larger nerves that come out from the sides are always in pain, especially when there’s pressure like when I’m sitting or in a certain position. Maybe the smaller nerves in my case are spared, but the larger ones took a hit.

 

It’s so weird that all of this for me started recently. Makes me think I’m one of the super rare ones that will never heal or slowly get worse over time. What happens when our body is too far gone to even know how to heal? How can anyone heal when they can’t sleep? What if glutamate Is continuing to damage my nerves because GABA isn’t there to off set it?

[[Aj...]]

I have everything you both have. If there was a position I could lie down in that is bearable as dose gets lower I might be able to get through it but there isn’t so I simply don’t know what to do.

[[De...]]

Akysta, can you put pillows around you body in a eay so you can lay down.  Maybe under your b ack aand  legs.

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I know how it sucks and the torture you are going through Ajusta!

 

It's very heartbreaking! I ask the same question almost every day.

 

Be very proud of yourself for getting to where you are and still fighting!

[[Aj...]]

Akysta, can you put pillows around you body in a eay so you can lay down.  Maybe under your b ack aand  legs.

 

No, I could be floating in mid air and would still be contacted in exactly the same way.

 

Even before WD I could only lie on back with legs up on big pile of cushions. Now that is not possible.

 

It is like body is getting more like this as dose gets lower.

 

 

https://www.medicalnewstoday.com/articles/318868

 

 

[[De...]]

Omg Ajusta, that sound so painful. Hope the muscles will loosen up soon for you. You to4mom

[[Pt...]]

So is stretching good? It triggers pain and I’m scared to force myself.

If indeed it is fibrositis which is hyperplasia of connective tissue around each muscle fiber, essentially scar tissue, would stretching be of any use?

[[Tr...]]

The jury is still out on that.

I read from a physical therapist,  who said stretching doesn't serve any purpose,  but if you like it, do it short and GENTLY.

 

I think, making something that's already hurting you, even more painful can't be good.

 

 

 

[[Pt...]]

Yeah. It seems like stretching may help normally stiff muscles, but may actually be harmful to injured muscles

[[Ul...]]

Hey gang, I'm new to this thread but still want to ask a question (hi Final!): I've been doing a super slow taper which is almost at 5 yrs now. I started at 6mg/day of klonopin and noticed muscle pain and soreness almost right away. Someone told me a long time ago that a taper attacks the weakest areas of your body. Must be true! I've had multiple back surgeries due to a serious car wreck and my knees took a beating from years of marathon and ultramarathon running although they didn't bother me nearly as much before the taper began. My knees and back are rocking my world! It's been a really big struggle for the last few years, but the last few months it all went to a new level. My muscles hurt almost throughout my body, but I do what I can. My question is, do any of you have problems with joints too?? Of course, my weakest areas are my back and knees, so those joints feel super crazy sore. My elbows hurt too...heck, all joints.

 

Hang tight, all!

 

Jeff

[[Tr...]]

Hi ultra,

 

Sorry to see you're having these issues. I have them too. Muscles painful and weak, tendons tight as steel cables. Walking becoming more and more difficult to do. Knees, hips, thumbs, back,  they all hurt. Painkillers do nothing.

Don't know what to do about anymore. Feeling desperate.

 

Hope we may get better.

[[Ul...]]

Hi ultra,

 

Sorry to see you're having these issues. I have them too. Muscles painful and weak, tendons tight as steel cables. Walking becoming more and more difficult to do. Knees, hips, thumbs, back,  they all hurt. Painkillers do nothing.

Don't know what to do about anymore. Feeling desperate.

 

Hope we may get better.

 

Troch, that surely chews the fat one. It looks like our muscles and joints are firing on their own even though we "tell" them not to. Sometimes I feel muscles contract without me doing it on my own, and it's just crazy. I had some miserable issues in the past with that happening in my GI tract. Tons of people have. Much better now, but oh what a ride. Hang in there, superstar!!

 

Jeff

[[Tr...]]

Hi,

 

Has anyone on here taken a prescription muscle relaxant to ease those tight and soar muscles?  And if so, any success with that?

[[Ul...]]

Hi,

 

Has anyone on here taken a prescription muscle relaxant to ease those tight and soar muscles?  And if so, any success with that?

 

Well, stupidly I took a script for cyclobenzapine from a doc friend of mine several years ago that was mainly given to help me sleep. I didn't know any better, so I took it. It helped a bit at the time, but not anymore. I guess maybe it would if I increased the dose, but I'm not willing to go down that road. I only take 2.5 mg (at night) but I'm trying to get off it. It's addictive and my body is so mega sensitive at this point (25 years of klonopin, including taper), so any change of any kind creates lots of issues. I think 5mg is a really low dose, but I'll soon be cutting it in half to get down to zero. I thought I would wait until I'm completely off k, but now I don't want to wait that long. I think it's really risky to add another Rx to the mix when we're tapering...better just to do natural things to help with soreness, etc. Soaking in epsom salts has helped a lot in the past. Usually I'll just soak my feet in it, but I don't do it everyday because it's really hard for me to get situated with a bathtub because of my killer situation with my back.

 

Next!!

 

Jeff

[[Aj...]]

Hi,

 

Has anyone on here taken a prescription muscle relaxant to ease those tight and soar muscles?  And if so, any success with that?

 

I got down to 2.15mgs diazepam last year and it was so unbearable tried Baclofen (again) Tizanidine, Dantrolene,  carbazepine & others now can’t remember the name of.

 

Unfortunately they all caused horrible side effects and extreme weakness & nothing lasted more than a couple of hours and made everything twist and spasm as each dose went in and out of system.

I then tried reinstating again on diazepam but horrific them moved to Clonazepam, horrific and now retapering and body is crushing itself eight wise again and twisting, pulling etc.

 

I also have extreme muscle wasting.

 

I know some ppl do get relief from muscle relaxants so it is worth trying I think.

 

In other countries (not U.K.) there is also Flexeril that some ppl find helps.

 

I am seeing osteopath & was getting myofascial release but not helping.

 

Back down to 0.3mgs clonazepam and in hell.

Soon no position will be remotely bearable again and I have no idea what to do as can’t stay on Benzos because now get horrible effects from dosing.

 

So ethi g has gone very badly wrong with my muscles - they have all turned to tight, knotty, fibrotic scar tissue.

 

[[Tr...]]

Hi Ajusta,

 

So very sorry for you. Hope you find the strength to hold on.

Is your muscle pain constant or does it ease at times?

 

Several answers to my posting made it clear,  muscle relaxants are not the way to go.

My muscle weakness is bad too. So much wastage. So little strength. Feet hurting and feeling like walking on moss or sharp gravel in my shoes. Getting worse rapidly. It is by far my biggest concern. Scares the sh*t out of me. Can't stop the fear of becoming an invalid.

 

[[Aj...]]

It is freaking horrific!

 

It is constant and gets worse as dose goes in and out of body and as as dose is getting lower again.

 

Do you have the crushing contracture as well as pain?

[[Tr...]]

Hi Ajusta,

 

When you mean muscles pulling tight all the time, I do have that. I constantly have to relax them, but they pull tight again immediately. The latest muscles that started to do that are the hamstrings and the inside fore arm muscles. Makes me so tired. Scared too, thinking it could be an awful disease,

My pain is at its worst in the morning,  after lunchtime things get more bearable. Evenings are mostly painfree! The tendons in my outside thighs are like steel cables.

I usually wake up around 4. 30 because of pain in my thighs. Doing an exercise for it every other day, doesn't seem to do much to make it better.

Wishing you a day without any pain.

Hold on!

[[Aj...]]

I have that steel cable thing through every single muscle in my body. All my tendons and ligaments are tight, some are rigid.

[[Bl...]]

I have that steel cable thing through every single muscle in my body. All my tendons and ligaments are tight, some are rigid.

Hi Ajusta.

This has been my biggest problem.

I’ve had a few injuries because of this, I have to be very careful with physical activity. I injured myself stretching a few days ago because I pulled too hard...Even light weights can injure me, this is because there is very little flexibility, it’s horrible.