Involvement of Cervical Muscle Lesions and Autonomic Nervous System in Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS)

[Treeman]

@Treeman My understanding is there is a flow of current between electrode pairs that creates the pulse waves, so with two pairs of electrodes you can bracket a target area. My first trial I had current flow across my spine, tomorrow I want to try current flow parallel to the spine. There may be no noticeable difference but for circulatory function I think it’s worth trying.

I have occipital neuroglia and if I put them to close to the site of injury it over stimulates the damaged nerve and leaves pain. So I now tend to not put them to close to it (or the spine) and let the pulse waves radiate not so concentrated between the electrodes. It still helps with the general knottiness in the shoulders.

 

[lenora]

Good Morning Everyone....I'll tell you about my experience with both electrical stimulation and infra-red massage. I went to a Myofascial Therapist (pretty hard to find 30++ yrs. ago). It was still in the early days of such therapy and was actually a combination of myofascial work and regular PT, such as bike riding, treadmill and the like. I was going 3 times/wk. (Look up the word "fascia" if you don't understand myofascial therapy).

One week I had to miss entirely and part of the other b/c of some illness or another. A very strange thing happened, I noticed that my body actually felt better and was far more relaxed. The answers to the problem were actually causing the problem. I'm now in therapy again at the suggestion of my neurologist. This is also a myofascial therapist. They're specially trained on how to work on our bodies without causing damage. I've been going for probably 6 wks. now and he did have me moving and holding myself up straighter. I have severe lordosis of the neck, so when I saw the picture of the woman with the good posture, my first thought was that she didn't have scoliosis, kyphosis and lordosis. We have to have our bodies apprised and then follow what it can do. I still have about 2 infra-red lamps here, (that you move over the muscles) and each time I use them, I end up even more tense that I was before.

For those of you who have success, that's great, you've found what makes your body happy. I never found it in the first therapist, but have found it in the one of today. Now I can't continue with the neck exercises b/c of some recent surgery I had. I'll listen to my doctor, and will hope that the myofascial therapist will find something else to help keep my neck turning without pain. Yours, Lenora.

 

[Actium]

Did you notice any benefit from the treatment with the TENS machine @Treeman ? Thank you @Hip for linking this thread.

 

[lenora]

Hello @ Actium...I know you didn't ask the question of me, but I would like to tell you about my experience with the TENS machine. Again, the more it was used, the greater the inflammation and soreness of my muscles. I'm a woman, was very petite at the time, had/have a lot of nerve damage so please take these things into consideration. I finally had it stopped being used altogether. I was constantly in dreadful pain.

I would encourage anyone to try any of these devices. In seeing what others go through and what works for them, I have to say that we're all different. Oh, I would definitely use something with a 4% lidocaine ingredient after being at PT. It may help alleviate some of the pain and even inflammation if you take the rest of the ingredients into account. It's OTC and I've found the roll-on best. Wishing you well....Yours, Lenora.

 

[Treeman]

Did you notice any benefit from the treatment with the TENS machine @Treeman ?

Hi, I used a tens machine and an infra red light for a month with no noticeable improvement or negative side effects. When I stopped no difference was noted also.

 

[Actium]

Thank you very much @lenora and @Treeman I might try this later myself.

 

[Rufous McKinney]

It's like your neck is constantly recieving traction especially when walking.

in Tai chi- its called sky hook. the top of your head is hooked to the sky.

its a lovely concept.

starting at 3 years of age: my back is not Ok. see photos Lordosis.

The only grandparent I ever met was my stepgrandmother- who would tell me to stand up straight.

I did not like this step grandmother. I did not like this criticism.

So addressing it might have been helpful but it was never addressed. My parents took me to special doctors long long ago, and as is the case for most of my life, I received no help.

 

[lenora]

Yes, I was constantly told to sit or stand-up straight. As if I couldn't/wouldn't have if I could have done so. So years and years of casts and braces rather helped, but it was rather miserable. Walking long distances probably helped the most of all...with said braces and casts, of course.

I like to think I'm fortunate that the lordosis, scoliosis and kyphosis hardly show up, but then you see the lordosis on an MRI and I feel that I should support my neck with a built-in hand of some sort. But no, there won't be more years of braces, etc., b/c I've had enough. Mind you, these were the old-fashioned heavy types, haven't tried the newer ones so they're probably a whole lot better. They were a definite step forward.

I've tried acupressure numerous times (for the full work out even), but have never tried tai-chi. Somehow I can't imagine myself doing it. It does build up good strength, though, and that's what we aim for. Yours, Lenora.

 

[Rufous McKinney]

I've tried acupressure numerous times (for the full work out even), but have never tried tai-chi. Somehow I can't imagine myself doing it. It does build up good strength, though, and that's what we aim for.

I ran into a picture of myself in my early 20s and I was actually impressed with my posture at that time.

I was doing Tai Chi. No, I'll never be some major figure, but it was helping my body out alot.

Gi Gong is sort of exercises that are tai chi like without getting into the complexity.

We were just too ignorant back then, and now we are buried in information in some exact opposite way.

So the Scoliosus family I grew up with, those gals wore the horrible braces. Obviously had it badly.

But me: it was not badly, so nothing is offered, when as a pubescent teenager, some skills in managing these spinal issues would be useful to have.

 

[lenora]

Well, yes, I think the braces and casts went by the wayside by the time I was about 12 or so. I wasn't exactly a dreamboat with long, thin arms and legs and then this enormous middle. But if anyone made fun of me, it wasn't for long.

I'd tell them to take a step back and punch my stomach as hard a they could. Many a trip to the ER was a result of someone trying. Today, my family would be sued. So...don't mess with me. Although I'm a kinder, gentler person now, and wouldn't dream of causing trouble for anyone. Yours, Lenora.

 

[Rufous McKinney]

I'd tell them to take a step back and punch my stomach as hard a they could. Many a trip to the ER was a result of someone trying.

well, I better never run into You in a school yard.

I remember my first embarassment when peers noticed- Church Camp, and your 13 and your defective and nobody else is: teased.

I must have gotten my revenge on those girls, by instead hanging out at the Boys Table- which was alot more fun.

Meanwhile- my lordosis issues were driving the problem at that time, and influencing the remainder of the spine...in this way it seems to do. I couldn't sit in the pew at church. oh that got me to a doctor- bone doctors.

He told me- oh this is part of your unique beauty. See, my whole life this CRAP from doctors. But he gave me a sheet of exercises and i did them, and it helped strengthen core muscles which helped the lower back muscles.

Decades later, I injured by lower back...physically. I could not walk on a sidewalk for about two years, severe lordosis.

This was remedied over two weeks by acupressure treatments and meanuevers involving my Toes. By working on my toes, and released blocked energy from that location- My lower back was remedied, I was back in business, and thats never happened like that, ever again.

the physical injury, responded finally to the energetic repair.

 

[Bowser]

Kjetil Larsen's work on the rehabilitation of cervical muscles is extensive. I have had a couple of consultations with him and have been successful in changing my posture to a more optimal one over the past six months,

Mainly, I have been able to eliminate the bump (or "cervical hinge") at the base of the cervical spine and correct forward head posture by having a long neck as shown in @sb4 's second picture.

Here is Kjetil's video on how to correct the cervical hinge:

One important thing is that you should NOT be tucking your chin. So try to emulate the second picture in @sb4 's post (where you can clearly see that the woman is not tucking her chin) and ignore the first picture which recommends that you tuck your chin.

If you really want to go in depth on this topic then you should read Kjetil's articles like this one: https://mskneurology.com/how-truly-treat-thoracic-outlet-syndrome/

I have been re-reading these articles several times as the medical jargon is hard to parse, but these are absolutely the most informative resources that I have found on this topic.

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Personally, I am also in the process of rehabilitating several neck muscles using specific exercises for each of the following muscles: scalenes, trapezius, longus capitis, levator scapulae, SCM and suboccipital muscles. You can find exercise videos on each of these muscles on Kjetil's channel.

(I have hyperlinked the scalene exercise video above, the others are searchable)

I have tremendous weakness of the scalene muscle (I can only manage to do one rep twice a week). Kjetil is fairly confident that I have Thoracic Outlet Syndrome (TOS), and I intuitively inclined to agree due to how difficult the scalene muscles are to work out. If I overdo the exercise, my fatigue is greatly exacerbated, so I have to do it slowly and gently.

It's important to note that I never would have realized how weak the scalene muscle was until I performed the exercise specifically meant to work it out, since the body has learnt to generally never activate this muscle. Upon this realization, my suspicion of TOS was greatly heightened, even though I had none of the obvious TOS symptoms like shoulder pain.

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Kjetil is not a doctor, but he IS a researcher in the process of getting his medical degree. To my layman's eye, his research is really good and cutting edge. He is the author of the only paper I can find that links TOS to cerebrovascular hyperperfusion (oversaturation of the brain with blood): https://www.apicareonline.com/index.php/APIC/article/view/1230/2037

Cerebrovascular hyperperfusion (which leads to IIH) is of course linked to ME/CFS by Dr Higgins' paper: https://pubmed.ncbi.nlm.nih.gov/28735654/

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My tentative personal opinion is that if you have mild to moderate CFS/ME, and have been cleared of cervical instability by neurosurgeons like Dr. Gilete or Dr. Bolognese, then an alternative cause of IIH (idiopathic intracranial hypertension) could be an important consideration.

The two other causes of IIH could either be:

1. Venous pathology: For example, bilateral obstruction or constriction of the transverse sinus veins. This can usually be treated with stents. Dr. Kenneth Liu's work on this is quite extensive.

2. Arterial TOS: This is caused by weakness of the scalene muscle. A weak muscle is a tight muscle, causing a narrowing of the subclavian artery by compressing it between the collarbone and the first rib. This diverts the blood that is supposed to go into the arm into the brain instead, oversaturating the brain with blood and causing IIH.

Treatment options can either be slowly and carefully rehabilitating and strengthening the scalene muscle (along with other neck muscles) over a couple of years. I am personally attempting this, by doing these exercises twice a week.

If this conservative option is too difficult, then the surgical treatment for arterial TOS is scalenectomy with first rib resection (https://acronyms.thefreedictionary.com/FRRS), where the scalene muscle is cut and part of the first rib is removed, freeing the subclavian artery.

 

[sb4]

I think it was an article by Kjetil that made me try out pertruding the lower jaw for TMJ (and neck posture). It appears to work with some caveats.

One important thing is that you should NOT be tucking your chin. So try to emulate the second picture in @sb4 's post (where you can clearly see that the woman is not tucking her chin) and ignore the first picture which recommends that you tuck your chin.

I only half agree with this. I think this is where mike mews work comes into play.
The african woman has her head back and neck straight, just like Esther does. Yet in this positions Esther has a double chin and her chin is close to her neck, yet african lady does not.

I believe this is because Esther, like most modern people has a poorly developed jaw and down swooping face. I have this too. If we had proper posture growing up, with tongue pressing up on the roof of the mouth then our maxilla would be pushed up, out and forwards. Our face would be less long and more forwards giving our jaw plenty of room when we are in the "chin tuck" position.

Its kind of hard to explain it through text but I hope that was clear enough.

This brings me onto my problem achieving a straight neck. If I lightly clench my molars (as they should at rest) and try to move my head into chin tuck, I get serious double chin and the position is super uncomfortable to hold as well as feeling like my airway is getting pushed in by my jaw.

My solution to this came from Kjetil's idea of pertruding the jaw slightly to relieve TMJ. If I protrude my jaw forwards then I can hold the extended neck posture position much easier. My jaw is naturally pushed back because my maxilla didnt grow forwards and up enough when I was a kid leading to jaw and neck posture issues.

The only problem with protruding my jaw is there is no place for it to rest comfortably as my teeth dont align when I clench in this position. I'm still working on that.

I am interested in TOS and will read the article you linked. It's interesting because before I got ill, sometimes when playing football or whatever, I would get a massive aching pain underneath my right shoulder blade when I was out of breath.
Also I went to a physiotherapist and pushups where getting too dificult to do at training due to a pain in my right shoulder. No idea if this has anything to do with TOS but the pain would be right where it is on the first picture of that article when I was out of breath.

 

[lenora]

Yes, I watched Kjetil Larsen's video and I can tell that he would cringe if he ever saw me. I wonder if something like a Philadelphia Collar would help keep the neck in position long enough to stretch it out somewhat?

I'm now 74, so years and year of spinal deformities have taken their toll. I'm not so sure that exercises would be the answer... approximately how old are you gentlemen? And I would most definitely encourage others to use the exercises, especially if you're still at young to middle years, even 55 or more if the damage isn't too great.

Improper posture leads to a tummy that isn't what one would choose, but then I'm trying to avoid surgery as much as possible. The natural anatomy of the body changes with age...I would how much of that is taken into consideration? Of course lack of exercise only makes it all worse, but then ill health also complicates the problems. Do work on it & I wish you well.

I would be leery of first rib surgery. Rib problems of any sort are very uncomfortable and painful...I've lived with them for over 35 years now. Not to frighten people off, but to check and really see how many people function just fine without pain, etc. (Those w/o ME are not proper candidates for your enquiries. Yours, Lenora.

 

[lenora]

well, I better never run into You in a school yard.

I remember my first embarassment when peers noticed- Church Camp, and your 13 and your defective and nobody else is: teased.

I must have gotten my revenge on those girls, by instead hanging out at the Boys Table- which was alot more fun.

Meanwhile- my lordosis issues were driving the problem at that time, and influencing the remainder of the spine...in this way it seems to do. I couldn't sit in the pew at church. oh that got me to a doctor- bone doctors.

He told me- oh this is part of your unique beauty. See, my whole life this CRAP from doctors. But he gave me a sheet of exercises and i did them, and it helped strengthen core muscles which helped the lower back muscles.

Decades later, I injured by lower back...physically. I could not walk on a sidewalk for about two years, severe lordosis.

This was remedied over two weeks by acupressure treatments and meanuevers involving my Toes. By working on my toes, and released blocked energy from that location- My lower back was remedied, I was back in business, and thats never happened like that, ever again.

the physical injury, responded finally to the energetic repair.

No, church pews were often difficult and especially bleachers (which were everywhere then). Oh, that was pure torture.

So acupressure worked for you....good. I've spent a fortune on holistic healing over the years, have really tried, but tai-chi does intrigue me. Just movements, but good ones. All in all, most days find me feeling rather fortunate in spite of the many problems. The fewer doctors I have, the better I seem to feel. It's rather depressing to hear about everything that's wrong with one....I feel like a hamster on a wheel. Lenora.

 

[Rufous McKinney]

The fewer doctors I have, the better I seem to feel. It's rather depressing to hear about everything that's wrong with one....I feel like a hamster on a wheel. Lenora.

I do think we can chase all these things with too much vigor and, well it gets overwhelming.

Fight back a little, Take a break, and have a nice day.

 

[Bowser]

I'm now 74, so years and year of spinal deformities have taken their toll. I'm not so sure that exercises would be the answer... approximately how old are you gentlemen? And I would most definitely encourage others to use the exercises, especially if you're still at young to middle years, even 55 or more if the damage isn't too great.

I'm in my late 20's myself. Yes exercise does seem like a viable option. I am going to continue doing these exercises for a year and if I experience notable improvement, I will continue treating this conservatively. If not, I might start considering surgical options.

 

[Learner1]

I've been in 2 significant car accidents, the first made me miserable for 12 years until I had prolotherapy injections which helped me to strengthen my neck muscles with exercise, resolving neck spasms, stiffness, pain, headaches, etc.

Two years later, I was rear ended a second time, giving me another whiplash injury in my neck, tearing my rotator cuff and twisting my lower back. My ME/CFS was at its worst, but I wanted to avoid the years of symptoms, so I did cranial sacral therapy, massage therapy to be able to tolerate anything else, then prolozone injections, which allowed me to exercise my neck and strengthen my neck muscles and repaired my rotator cuff, avoiding surgery.

I worked with physical therapists who gave me very fine motor exercises to restore my neck muscle function. When jeff_w's story came out, I shared it with the doctor of PT that I was working with and she went through some movements that had I had that problem I would have reacted very badly. We concluded that the work that I had done to rehabilitate my neck and help me avoid such a problem.

I still have permanent damage to the vertebrae and my neck, and my neck has broomstick straight rather than having a normal curve, but I have normal function and I'm not in pain and don't get headaches or react to the car going over speed bumps, etc.

We are each individuals, but I do believe that neck problems do contribute to ME/CFS and I also believe that a lot of patients could improve through prootherapy or prolozone injections and then exercises to strengthen neck muscles. I had to have everything written down and it was a huge effort to do the work to rehabilitate my neck while I'll, but very much worth it.

 

[lenora]

Learner1....good for you. It does sound as if you're working things out for yourself. I find that cranial sacral therapy is good and can also help the vagus nerve. Once spasms set in, only exercises, meds (which do help) and even ice can often control them. They're doggone painful things, especially if you also have nerve damage.

That's the first time I've heard of exercise that has prevented rotator cuff surgery. That's often a tough, painful one to recover from, so I'm glad it worked out for you.

I find that exercises help keep me moving. I don't do them all at once, pace myself so that my body isn't overwhelmed as that's very easy to do. Thanks for your story. Yours, Lenora.

 

[lenora]

Bowser....Yes, even at my age, I've found that exercises can help keep the body moving and are a necessary thing in life.

I don't expect that I'll ever have a graceful neck and movements, but I sure look better than a lot of people my age do.

A good exercise my ostepath told me about sounds & is simple, but it seems to work a muscle that's really needed by us. Lower the neck towards (not at) at the nipple area. Sounds gentle, so start with 8 repetitions, but boy can that ever work other muscles that seem to be forgotten about. It's easy to do, so I do neck exercises at few times per day. But each person has to be his/her own doctor and know when something isn't helping and may even be dangerous. We are all different in what our bodies need and will tolerate. Hope this helps someone and doesn't hurt anyone else.

And yes, Rufous, sometimes we can get on this medical merry go-round and it's just plain exhausting. Having a normal life as possible is also well advised. It doesn't help to hear negative comments constantly. I was caught up in that with so many hospitalization for such a wide variety of conditions. No one can cure me, that's understood, but it does complicate matters when even specialists in the same field can't agree on what's wrong.

I need the same understanding and helpful ear I've had for the past 35 years. Fortunately, I do, but I feel especially bad for those of you who don't. Not everyone can fix us, but everyone can afford to listen and react accordingly. Yours, Lenora.