Extremely Severe and debilitating Muscle tightness

[ChrisD]

Asking for a friend with Severe M.E. For over 16 years:

He has extreme symptoms of muscle tightness all over including:

Head feeling like it's in a clamp/vice
Tight throat & neck
Tight Chest but also sensation of extreme energy in heart.
Tight Wrists, ankles, hands and feet.

This has been validated by doctors and physios who say that they're some of the tightest muscles they've ever seen, and have observed that the effect of their therapies don't even last hours/days and therefore won't work with him.

Doctors have tried all sorts of medications including stuff for psych/sleep, but also painkillers, muscle relaxants, but nothing works - only valium gives about 30 mins relief. (has also tried various supplements and CBD etc. To no avail). Uses lots of magnesium topically and orally but no significant effect.

He also has Reflux, and repetitive Vomiting. Extreme sensitivity of the nervous system, stimulated by minute triggers. However not light and sound sensitive.

All blood tests and other tests are "normal", and every private test under the sun has returned relatively normal results.

Sometimes we wonder if this is even M.E. Or some unique condition, but does any of this sound familiar to anyone? And have any idea of potential solutions?

 

[Viala]

Maybe trying ionic magnesium would be a good idea? Some people say that they have much better results with ionic minerals.

Is there fatigue, pain? Post exertional malaise? That would indicate CFS/ME. Repetitive vomiting may suggest some allergic reaction.

 

[ChrisD]

Maybe trying ionic magnesium would be a good idea? Some people say that they have much better results with ionic minerals.

Is there fatigue, pain? Post exertional malaise? That would indicate CFS/ME. Repetitive vomiting may suggest some allergic reaction.

Yes he has tried Ionic magnesium liquid too.

The symptoms noted above are in addition to a typical profile of Severe M.E.

Allergy testing hasn't revealed anything. Only foods that he avoids if there is a slight allergy.

I think Cyclical vomiting can be related to serotonin? But that hasn't led to any leads either

 

[Viala]

Yes he has tried Ionic magnesium liquid too.

The symptoms noted above are in addition to a typical profile of Severe M.E.

Allergy testing hasn't revealed anything. Only foods that he avoids if there is a slight allergy.

I think Cyclical vomiting can be related to serotonin? But that hasn't led to any leads either

Oh, sorry that ionic magnesium didn't help. These symptoms sound like tetany so magnesium should work here, but it seems it's more complex. I wonder about this vomiting. Has he visited a gastroenterologist? Vomiting is not a typical CFS/ME symptom, but some CFSers need to be tube fed, maybe that's related somehow.

I made a couple of food allergy tests years ago and they all came out negative, but I felt tremendous improvement when I stopped eating certain foods, it is not related to CFS though, I think. Maybe trying an elimination diet would be a good idea? With a dietitian or doctor approval of course. My muscles feel tight all the time, that was one of the first symptoms that I noticed, but not as tight as you described. It feels like muscle sores after a workout and it's painful, it rarely goes away.

 

[perchance dreamer]

I can't offer any suggestions, but it is interesting about Valium. It's actually a very good muscle relaxer, which I used a few times for bad TMJ before I got it under control. Of course, Valium can be habit forming, so I'm guessing that's why it's not used as much as drugs such as Flexeril and Baclofen as a muscle relaxer.

 

[Insomniac]

I wonder if the ME patient has co morbid Erlos Danlos or hypermobility spectrum too.
I recently got diagnosed with hypermobility spectrum after 20+ years with "only" ME and fibromyalgia diagnosis.

When your muscles are weak and hypermobile, they tense up in a horrible way to overcompensate.

Agree with the magnesium recommendation. Baclofen is an alternative to vallium for muscle relaxation. Although I found it slightly more addiction.

 

[linusbert]

Asking for a friend with Severe M.E. For over 16 years:

He has extreme symptoms of muscle tightness all over including:

Head feeling like it's in a clamp/vice
Tight throat & neck
Tight Chest but also sensation of extreme energy in heart.
Tight Wrists, ankles, hands and feet.

This has been validated by doctors and physios who say that they're some of the tightest muscles they've ever seen, and have observed that the effect of their therapies don't even last hours/days and therefore won't work with him.

Doctors have tried all sorts of medications including stuff for psych/sleep, but also painkillers, muscle relaxants, but nothing works - only valium gives about 30 mins relief. (has also tried various supplements and CBD etc. To no avail). Uses lots of magnesium topically and orally but no significant effect.

He also has Reflux, and repetitive Vomiting. Extreme sensitivity of the nervous system, stimulated by minute triggers. However not light and sound sensitive.

All blood tests and other tests are "normal", and every private test under the sun has returned relatively normal results.

Sometimes we wonder if this is even M.E. Or some unique condition, but does any of this sound familiar to anyone? And have any idea of potential solutions?

has he been checked for myopathy's? muscle biopsy? neurology? ENG? EMG?
stiff-person syndrome?

has he tried any other electrolyte besides Mg.
sodium? potassium? calcium? phosphat?

plain sugar?

tyrosine?

do CREATINE and carnitine work?
especially creatine is muscle protective. its something my neurologyst prescribed. he says its good for all muscle sick people.

 

[hapl808]

stiff-person syndrome?

This is what I thought of immediately as well.

Stiff Person Syndrome

 

[linusbert]

This is what I thought of immediately as well.

Stiff Person Syndrome

site says "People with SPS respond to high doses of diazepam and several anti-convulsants, gabapentin and tiagabine."

have those been tried? diazepam, gabapentin, tiagabine?

 

[Zebra]

As mentioned by two other members, I also wanted to ask if Stiff Person Syndrome has been considered and tested for.

My understanding is that it's pretty rare, so doctors other than neuromuscular specialists may not be familiar with it.

8 years or so ago, it was associated with VERY high levels of the anti-GAD antibody (the same antibody associated with autoimmune diabetes), but I have not kept up to date on what new biomarkers may have been discovered since then.

I'm very sorry for your friend and it's super nice of you to try and help them, @ChrisD

 

[minimus]

I have on/off muscle stiffness that has gotten worse as my ME got worse, though I experience it from my mid-back through my legs. I also have pretty severe leg/back muscle heaviness, weakness, post-exertional muscle soreness and often severe lumbar spine pain,

I’ve been to three neurologists, including a neuromuscular expert, and none of them turned up any explanation after two EMGs and a wide array of blood tests. I do have some abnormal imaging and test findings - a ”non expanding” syringomyelia in my cervical spine, low lying cerebellar tonsils, varying degrees of foraminal stenosis in my cervical and lumbar spine, and an abnormal urodynamic study consistent with neurogenic bladder. So I am trying to get evaluated for a ”structural”/spinal contributor to my symptoms.

My muscle stiffness seems to be triggered to some extent by food sensitivities - I have found that some foods like starches, almonds and walnuts can bring on bouts of muscle stiffness. Avoiding those trigger foods and adhering to a paleo diet (mostly meat/poultry, green vegetables) seems to help a fair amount.

The only medications that alleviate stiffness to some extent for me are doxepin - which works as an antihistamine, making me think there is an allergic component to my muscle stiffness - and flexeril. Flexeril works quite well for me but I use it sparingly as it seems to kick off episodes of next-day depression. I have been prescribed baclofen and it doesn’t seem to help at all. Neither does clonzepam.

 

[GreenEdge]

I had severe muscle tightness in my thighs for about 10 before I found a musculoskeletal doctor who put me on Baclofen. During that period I found a masseuse that discovered it was all coming from my lower back. My leg muscles were in constant tension to support my lower back. And this would propagate up my back. At one point in time I had numbness from the chest down.

To this day my back has a knotted muscle on one side of my lower back and I still have some muscle tension in legs. There must be an injury there but no scan has ever detected anything - so whatever caused it has healed? Still today my lower back is fragile and sensitive to doing too much exercise. It needs more strength and endurance, but is 100 times better today than it once was.

Baclofen helped me allot but there's a fine line between not enough and too much. Too much causes the muscles to become ropy. Baclofen and Lyrica at night helped more. Adding a small amount of Mirtazapine gave a slight improvement.

Last year I replaced all above with a cannabis oil that has a 3:1 THC/CBD ratio. I find that works way better. Only high THC can make that knotted muscle relax, and with that I need some CBD to keep my sanity. Over time that knotted muscle will improve as a result of that relaxation time. I take a break from cannabis when I start to become desensitized to it, and I use Baclofen and Lyrica only then.

 

[keepontruckin]

I have not read the whole thread. just the first few posts. My relative always has the tightest muscles as you describe. Massages are so helpful but the benefits disappear fast. She had vomiting quite badly for a while and was losing weight. Turned out it was lyme disease and when she was treated with antibiotics that cleared up. Maybe the lyme bacteria infect the vagus nerve which causes the nausea. For some reason people with me cfs are more prone to having problems with lyme.

 

[Insomniac]

has he been checked for myopathy's? muscle biopsy? neurology? ENG? EMG?
stiff-person syndrome?

has he tried any other electrolyte besides Mg.
sodium? potassium? calcium? phosphat?

plain sugar?

tyrosine?

do CREATINE and carnitine work?
especially creatine is muscle protective. its something my neurologyst prescribed. he says its good for all muscle sick people.

What this poster says is extremely important.

EMG in particular is such a basic test, yet I had to be sick for years before they gave it to me.
It checks for so many diseases.
All this poster's suggestions are spot on.

 

[wolves2626]

Asking for a friend with Severe M.E. For over 16 years:

He has extreme symptoms of muscle tightness all over including:

Head feeling like it's in a clamp/vice
Tight throat & neck
Tight Chest but also sensation of extreme energy in heart.
Tight Wrists, ankles, hands and feet.

This has been validated by doctors and physios who say that they're some of the tightest muscles they've ever seen, and have observed that the effect of their therapies don't even last hours/days and therefore won't work with him.

Doctors have tried all sorts of medications including stuff for psych/sleep, but also painkillers, muscle relaxants, but nothing works - only valium gives about 30 mins relief. (has also tried various supplements and CBD etc. To no avail). Uses lots of magnesium topically and orally but no significant effect.

He also has Reflux, and repetitive Vomiting. Extreme sensitivity of the nervous system, stimulated by minute triggers. However not light and sound sensitive.

All blood tests and other tests are "normal", and every private test under the sun has returned relatively normal results.

Sometimes we wonder if this is even M.E. Or some unique condition, but does any of this sound familiar to anyone? And have any idea of potential solutions?

Well most of the people mentioned here stiff person syndrome it could be. Gad antibodies can be searched. And also other friends shared experiences and mention gabapentin, baclofen. However diazepam also employed for the treatment of sps.
My n=1 experiment was resulted in small fiber neuropathy. I have cement like legs ( calves) and arms. Tried gabapentin unlucky too many side effects. I have got burning pain also as a symptom. So your friend could also go after sfn. Proper diagnosis is made through a skin punch biopsy near a foot ( ankle). It is a simple procedure done with local anesthetic.
Hope your friend find the cause and get some relief. And of course I am not a medical person this is just based my story and research.

 

[ChookityPop]

I wonder if the ME patient has co morbid Erlos Danlos or hypermobility spectrum too.
I recently got diagnosed with hypermobility spectrum after 20+ years with "only" ME and fibromyalgia diagnosis.

When your muscles are weak and hypermobile, they tense up in a horrible way to overcompensate.

Agree with the magnesium recommendation. Baclofen is an alternative to vallium for muscle relaxation. Although I found it slightly more addiction.

How did you find baclofen addiciting if I may ask?

 

[ChookityPop]

I have not read the whole thread. just the first few posts. My relative always has the tightest muscles as you describe. Massages are so helpful but the benefits disappear fast. She had vomiting quite badly for a while and was losing weight. Turned out it was lyme disease and when she was treated with antibiotics that cleared up. Maybe the lyme bacteria infect the vagus nerve which causes the nausea. For some reason people with me cfs are more prone to having problems with lyme.

Do you by any chance know which abx your relative took or what protocol?

 

[keepontruckin]

She took a number of different antibiotics to clear up the lyme and co infections. It helps to see a knowledgeable doctor who is specialized in clearing these from the body starting with the most predominant infection first. Based on your main symptoms the doctors know which infection to treat first. The other approach is to follow a herbal path which you could start immediately. There are many different sources. Perhaps the betterhealthguy.com could be a start. buhner is knowledgeable. klinghardt is expensive but can help you. Good luck.

 

[Wayne]

And have any idea of potential solutions?

Hi @ChrisD -- I just noticed this thread yesterday, and this morning ran across an interesting REVIEW at Amazon which I thought you might find of interest.

If the improvement mentioned is indeed from raising dopamine levels, then tyrosine and methylene blue might also be helpful (both are purported to increase dopamine levels). -- Good luck finding something that works for you!

"I have been using Macuna Pruriens Extract Power for muscle spasms and replenishment of dopamine receptors. Macuna Pruriens has a high concentration of L-DOPA which is the precursor to dopamine and can pass through the blood brain barrier. ​

​

I have been having very painful and annoying muscle spasms in my calf and quad for over a year now and one of the only things that has helped is taking a hefty dose of Macuna Pruriens before bed time. Highly recommend for muscle disorders."​

 

[Insomniac]

How did you find baclofen addiciting if I may ask?

I find it works less well as the years pass.

I never got addicted because only took it once a week. I should not say addicting. I should say that baclofen is a bit habit forming for some people,.