Neck/clavicle nerve pain consistent with CFS?

[KRR]

Hi, as a sufferer of severe CFS, I'd like to get some understanding of this symptom that has flared up every few years for several months at a time and is very debilitating. The pain is very sharp and stabbing, and triggered by very slight movements of neck and shoulders which are completely unpredictable, so I go around yelling OW! every time I move my neck and shoulders certain ways or push down on things with my arms in certain ways.

Even very small movements like rotating my right shoulder a bit forward will send a shooting pain through my left clavicle and neck area. Sometimes it's more on the right side. So it's hard to pinpoint the origin, and I think that would suggest that it's not just a typical structural issue..? The pain mostly goes away when I reverse the offending movement, although a soreness remains. Even just holding a coffee mug, I can feel the pain in my neck/sternum/collarbone area, sometimes just a painful strain and other times a more sudden and sharper pain, but it definitely feels like nerve pain.

It's nearly impossible to find any sleep position that doesn't trigger it, and then shifting position in bed by pressing down with a hand or arm will trigger the pain anywhere in the neck/sternum/clavicle area, unpredictably. In the past I've gone for months sleeping on the couch all propped up on my back, barely moving once I found a pain-free position. I'm hoping to prevent the current flareup from progressing that far.

I'm looking forward to a phone consult with Dr. Chia in the near future, after I get the necessary tests and paperwork together. I certainly plan to discuss this with him. But it may take a couple of months to get the lab results in and a consult appointment. I need to do more research and see if there's anything I could be doing in the meantime. I bought Equilibrant but am not sure about starting it before talking to Dr. Chia.

I just got finished working with a neurologist for migraines, and exhausted all the possible pain meds, having intolerable reactions to everything (even Gabapentin) except occasional Imitrex. So my options for pain meds are pretty much limited to small, infrequent doses of Ibuprofen and Acetaminophen, which do help somewhat when I take them, but I can't take them around the clock. I want to get to the bottom of this, but I'm all in favor of managing pain in the meantime!

Thanks for any thoughts on this.

 

[Valentijn]

If I get shooting back/neck pain, cracking the joints involved (very carefully and slowly, to avoid further locking-up) resolves it.

 

[Seven7]

I have been dealing with that, I noticed it went away when I added magnesium 1,000mg at night. Also I am aware of my potassium levels.

 

[KRR]

Thanks, I was using transdermal magnesium chloride but found it too uncomfortable to get enough of it. I'm not sure that oral Mg is utilized well.. what form do you use?

 

[KRR]

Now I'm thinking this is looking like costochondritis or Tietze's syndrome, and I've started to use serrapeptase. Any experiences with serrapeptase, I'd be interested to hear.

 

[Asklipia]

Hi KRR,
What you describe is consistent with what Dr Perrin thinks is a major cause of the symptoms of CFS/ME (I did not say the original cause) : a congestion of lymph in the chest, leading to a blockage of the transfer of lymph from the lymphatic system to the sub-clavicular vein.
Take a look at those : here
Best,
Asklipia

 

[Wayne]

It's nearly impossible to find any sleep position that doesn't trigger it, and then shifting position in bed by pressing down with a hand or arm will trigger the pain anywhere in the neck/sternum/clavicle area, unpredictably. In the past I've gone for months sleeping on the couch all propped up on my back, barely moving once I found a pain-free position... I'm all in favor of managing pain in the meantime! Thanks for any thoughts on this.

Hi KRR, so sorry to hear what you're going through. It must be extraordinarily difficult for you. As far as managing this, there's a reflexology exercise I've discovered that helps me a lot with neck pain; perhaps it will help you as well. In reflexology, where the big toe connects to the foot corresponds to where the head connects to the neck and torso. Here's how to proceed:

Hold your left foot steady with your left hand, take hold of your left big toe with the fingers of your right hand, and then begin to twirl it, slowly and methodically. You will likely hear and feel various kinds cracking as tension begins to release in the area. I would do it for at least 2-3 minutes, then do the same with the other foot.

I did this once for an ongoing VERY stiff neck that showed no signs of letting up, and was continuing to get worse, even after ten days. After twirling each big toe for 10-15 minutes one night, my stiff neck was 90% improved when I woke up the next morning! To this day, I twirl each big toe in the morning for about a minute as part of my energetic exercise routine.

Also, A to B Calm (Brand Name) has a product called Freeze Dried Calcium/Magnesium. It's a powder that when dissolved in water gets into your muscles in minutes. It has done wonders for me and also my sister who suffered all her life with a stiff neck from having been a breach baby. It's the only thing that has ever helped her on a consistent basis. Click on the image below to get more information:



One other possibility might be to put a rolled up foam pad under you neck (if you can tolerate it), and lay on it for periods of time. The goal is to have the resulting curvature from doing this match the original curvature that the neck is supposed to have. --- I hope you can find something that works for you.

Best Regards, Wayne

 

[KRR]

Thanks so much for your suggestions, Asklipia and Wayne, I will look into them!
Asklipia, the Perrin technique looks very interesting, and I'd like to pursue it. I wonder if people have gotten good results by doing the lymphatic massage on their own.
-Karen

 

[Wayne]

One other suggestion. I've experienced some REALLY positive developments in my spine, neck, posture, joints, etc. the past few weeks using some "Egoscue E-cises". I could describe some of what I've learned if you're interested, but will leave you with the following link, which takes you to a series of YouTube videos, which demonstrate some very simple postural corrective positions, many of which affect the neck. Note: The most important of all of these is the "Supine Groin Stretch".

Egoscue E-Cises

 

[KRR]

Thanks Wayne, actually I have looked into his work in the past, and I will look again. More recently I have done Hanna Somatics Education, and that helped a lot, although I didn't keep it up without a practitioner. With severe CFS you really have to prioritize things and devise shortcuts, I'm sure everyone here knows!

 

[Wayne]

Thanks Wayne, actually I have looked into his work in the past, and I will look again. More recently I have done Hanna Somatics Education, and that helped a lot, although I didn't keep it up without a practitioner. With severe CFS you really have to prioritize things and devise shortcuts, I'm sure everyone here knows!

One more item while I'm thinking of it: The core e-cise called the Supine Groin Stretch affects every part of the body, including the neck. The reason I think it might be good for your situation is because you don't have to move or stretch your neck one iota. The effects are indirect, so you don't have to risk additional trauma. Here's link to a 5-minute video of an in-depth description of this e-cise:

The Egoscue Tower

Thanks for the tip on the Hanna Somatics Education; I'll have to check it out. The whole area of structural issues affecting pwCFS is a priority interest of mine. I just got done doing the Egoscue "Hip Crossover" Stretch" [less than 1 minute long] and am amazed how it's shifted my energy. I'm looking forward to going for a walk to see how it all feels structurally as well.

 

[KRR]

Thanks Wayne, the Tower looks great - I'd love to try it, once I can lie flat! At the moment I have to be propped up, I guess there's still too much pressure on the inflamed ribs when lying.
And that Crossover Stretch is very similar to a Somatics exercise I used to do, one of my favorites.
About Somatcics - I love Dr Hanna's concept of Sensory Motor Amnesia, how the nervous system forgets how to control the muscles naturally, and how to retrain it.
Martha Peterson's Hanna Somatics website, book and DVDs are great..
http://www.essentialsomatics.com/index.php?/hanna-somatics-learning-center/about-hanna-somatics/
(Sorry, didn't figure out how to embed links)
Also what Hanna says about stretching vs pandiculation is fascinating:
http://essentialsomatics.wordpress.com/2010/09/20/pandiculation-dynamic-stretching-squared/
Now I just have to get some of my inflammation down so I can get back to doing this stuff and keep it up this time!

 

[Asklipia]

Thanks so much for your suggestions, Asklipia and Wayne, I will look into them!
Asklipia, the Perrin technique looks very interesting, and I'd like to pursue it. I wonder if people have gotten good results by doing the lymphatic massage on their own.
-Karen

I do not know. I did not do the Perrin Technique myself. I read his book and I am convinced he is right in his approach. I was doing an exercise that brings about similar results. So in a way I can say, Yes, you can achieve the results on your own. I did get huge results and even this morning I have seen a benefit, after more than 90 days on doing my exercise. I thought I would do it for 120 days, ending on 1st october because recently I was not noticing much change and I was feeling very well and energetic. Seeing what happened this morning (a big rash on both sides of the neck, sudden improved vision in one eye, burning muscular pains between the shoulder blades) after about one week of no real change means there is at least one or two months to stabilize so my aim now is Christmas. If I don't get new dramatic improvements in the meantime .
One thing I must say = I now know a cure is possible. But there is a postural component to this, which can be fixed, but not by someone else than yourself. Any postural change has to be supported by new muscles otherwise it will not stay.
Lots of good wishes!
Asklipia

 

[Ema]

Hold your left foot steady with your left hand, take hold of your left big toe with the fingers of your right hand, and then begin to twirl it, slowly and methodically. You will likely hear and feel various kinds cracking as tension begins to release in the area. I would do it for at least 2-3 minutes, then do the same with the other foot.

I did this last night and it really helped my neck. Thanks!