Chronic painful muscle knots, widespread

Posted by 1k194 @1k194, Nov 6, 2023

Has anyone else experienced widespread, painful muscle knots that literally never go away?

For years now I’ve had many painful knots in several areas of my body. I have tried ice, heat, muscle relaxers, over the counter pain medication, and massage/trigger point pressure and NOTHING helps. My spouse can find dozens of hard knots in my face, head, jaw, neck, upper back and shoulders, back, arms and legs. The knots are always there, cause pain without touching the area and cause unbearable pain that is nauseating if pressure is applied to the knot(s). My spouse tries to massage them the make the knot release but it doesn’t help; I just can’t stand the pain and it quickly becomes nauseating. Sometimes the general pain of it (pain that is present without pressing on the knots) is so bad it keeps me awake at night.

What could be causing these knots and pain and what can be done to relieve it?
Thanks

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@artemis1886

I have had knots in my shoulders, back and calves for over 20 years. I saw a massage therapist that did deep tissue massages and he was a ex nurse. He could never get rid of my knots. The neurologist did an EMG on me and diagnosed me with severe dystonia. The neurologist Botox’s the muscles and they some what relax but they don’t go away. I just live with it. Some times they contract so much the neurologist does cortisone injections and my neck will pop into place.
Bottom line there is nothing that works.
Ask the doctor about Botox. Medications for muscle spasms do nothing.

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Have you tried dry needling? It seems like that is the only thing that helps me a bit

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@1k194 I see this is an older post I hope you have received some help. My wife is the same way I can’t touch her back or arms and she gets frustrated when doctors tell her she should get a massage but she can’t be touched!

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@sbtheplumber1

@1k194 I see this is an older post I hope you have received some help. My wife is the same way I can’t touch her back or arms and she gets frustrated when doctors tell her she should get a massage but she can’t be touched!

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I am that way it’s excurating pain when I am touched. When people walk up and hug me I grin and bear it. A deep tissue massage hurts like double hockey sticks. It brings tears to my eyes. I will tell you this a good massage therapist will keep going when your crying. It helps the pain and makes you feel better. It last for about a week. It feels like the muscles and nerves are too exhausted to contract. When the massage wears off the the pain comes back.
I tried dry needling it was extremely painful. I had bacterial spinal meningitis. It permanently damaged a bunch of my nerves.

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@artemis1886

I am that way it’s excurating pain when I am touched. When people walk up and hug me I grin and bear it. A deep tissue massage hurts like double hockey sticks. It brings tears to my eyes. I will tell you this a good massage therapist will keep going when your crying. It helps the pain and makes you feel better. It last for about a week. It feels like the muscles and nerves are too exhausted to contract. When the massage wears off the the pain comes back.
I tried dry needling it was extremely painful. I had bacterial spinal meningitis. It permanently damaged a bunch of my nerves.

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She’s tried massage and can’t stand it.

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I had a very bad knot on my shoulder. Frankincense oil took care of that.

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I HAVE THE EXACT SAME KNOTS!!!
Mine started about 4 yrs ago. I also used to call these “muscle knots”. Believe me, I tried EVERYTHING to help the constant pain of these knots to go away. I’ve tried ice, heat, muscle relaxers, massage, Tiger Balm, CBD oil, Epsom salt, vibration from hand- held massagers, prescription narcotics and care from a Chiropractor. I’ve also caught myself hunched by a corner of the wall, trying to rub these knots out. NOTHING HAS HELPED ME!!!
Recently, Ive been visiting a pain clinic. My doctors have tried 9 different procedures on 9 different parts of my back. We’ve done X-rays, MRIs, and CT scans, which identified the problem!!!
My doctors have found a bone spur pushing against my spinal cord, spinal stenosis all down my back. I also have compressed vertebrae in the lower part of my back which has caused problems from my waist to my toes. My spine is also in a dextroscoliosis curve. All of this means, I have nerves being pinched in all parts of my body. I once thought I had muscle knots but really they are nerve knots.
I’m hoping you receive this message sooner than later… hoping to save you a ton of money, time, and pain!! It’s been 4 years of constant pain, with absolutely no relief.
I’m 51 years old and trying not to have back surgery. My next ounce of hope is coming from being scheduled for a pain pump device to be implanted in my right hip. The surgery is scheduled for the end of July!!
Wishing you some relief real soon 😊

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@artemis1886

I am that way it’s excurating pain when I am touched. When people walk up and hug me I grin and bear it. A deep tissue massage hurts like double hockey sticks. It brings tears to my eyes. I will tell you this a good massage therapist will keep going when your crying. It helps the pain and makes you feel better. It last for about a week. It feels like the muscles and nerves are too exhausted to contract. When the massage wears off the the pain comes back.
I tried dry needling it was extremely painful. I had bacterial spinal meningitis. It permanently damaged a bunch of my nerves.

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@artemis1886

Have you been checked for fibromyalgia?

It sounds like it could be fibromyalgia because it causes pain, and nothing like massage helps. I have had fibromyalgia for many years.

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@briarrose

My constant "knots" are in my neck, shoulders, tops of arms, hips and back due to my chronic high level of anxiety - despite medications for my mental health issues. But that is not the only culprit. Of course I could list multiple suggestions/activities to reduce stress/anxiety but you already know them. Already mentioned is meditation (to detach) and daily exercise (walking?) not only for the body - but for the mind...increases those feel good endorphins.
Your particular "knot" condition sounds particularly alarming. In my humble opinion, mental health issues and obviously physical health issues all must be ruled out (one by one) to, hopefully, find a cause.
Having said that, I know for a fact, chronic high levels of cortisol/adrenaline in the body due to an unmanaged serious anxiety disorder can and does affect the "body" in more ways that I can tell you. Constant stress/anxiety is a killer and the root cause of so many physical diseases. The mind-body connection undeniable. Are you in therapy/see a psychiatrist? (I believe you most certainly should be). Do you have multiple layers of trauma in your life? Physically, possible other causes...are you on cholesterol-lowing medications? (could affect the body severely). Do you have an autoimmune disorder? Have you ever tried trigger point injections? (the effects are only short term). Have you seen a pain management specialist? Rheumatologist? (I would start here first in addition to mental health support). Think back to when this particular "knot" condition started years ago...can you identify a trigger? Even if "seemingly" small? Or was there a major change in your life? Happy or sad? Doesn't really matter IF it somehow affected your "mind"...what does your PCP say about your presentation? Helpful or not? You might want to do some real investigating...such as researching "rare" diseases. Maybe you are there? I would also consider, if you continue to be at a dead end with your ongoing pain condition, to call one of the 2 top medical clinics in the country.
The Mayo Clinic or The Cleveland Clinic. They both have pain management specialists/departments & located in different areas of the country.
Yes, it might be a huge inconvenience to travel there, expensive, referrals may be needed, etc. but at this point in your life it sounds like to me you have NO quality of life.
Do you wish to continue to live the rest of your life as it is now?
Only you can answer that. To me it's a no brainer.
I wish you all the very best in finding answers to your never-ending life of pain. Don't give up faith and hope.

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@briarrose could you have fibromyalgia ?

It sounds like it to me. I have painful spots all over my body. Whenever someone touches my spine, shoulders, arms, legs…everywhere it is extremely painful.
I have had fibromyalgia for many years, and have never found any solutions.

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@1k194 could it be fibromyalgia ?

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@SusanEllen66

@artemis1886

Have you been checked for fibromyalgia?

It sounds like it could be fibromyalgia because it causes pain, and nothing like massage helps. I have had fibromyalgia for many years.

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I ended up being diagnosed with fibromyalgia in 2002 secondary to the bacterial spinal meningitis. The meningitis caused the fibromyalgia. I have also severe axonal sensorimotor polyneuropathy, small fiber neuropathy, elner danlos 3, dystonia, RA, Sjögrens, cardiac autonomic neuropathy, and CIDP. The meningitis for me caused severe nerve damage through out my body. Yes, massages hurt, My neurologist was sadistic his motto was no pain no gain. He passed away after over 20 years seeing him. I cry through them, I would also feel so much better afterwards.

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