Ideas for improving or coping with neck pain?

Gingergrrl

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Hi @Gingergrrl - that's too bad you can't take or use magnesium. You may have told me this before, I can't remember. Because I've had such good results with the topically applied magnesium oil, I would try the peppermint oil and thyme oil which have also been suggested. And I'm sure it would be good to get testing done (MRI I guess, as someone suggested) to try to find out what is going on.
I can use Mg but it has to be very sparingly. I take just one Mg Malate pill every night (even though the dose on bottle is to take three pills AM and three PM). When I stop it, I get horrible leg cramps in my calves that wake me up at night so I continue to take it. But when I try transdermal Mg, epsom salt foot baths, or my worst nightmare which was IV Mg, I do not do well at all. But no one (me or my doctors) knew that I had the calcium blocking autoantibody at that time.

Re your retina - I don't think flashing lights are a part of "normal" aging, plus you're not very old at all anyways!
I am 47 (so it's not like I am in my 20's LOL)! Dr. Google seemed to imply that it can be a "normal part of aging". But to be honest, I have had so many weird things medically, that it is very hard for me to even judge what is "normal" any more. It is so helpful to ask all you guys on here as a good reality check!

I worked with a woman once who suddenly developed flashing light in one eye. This was many years ago but as I recall, she was told to get into the doctor right away. Her retina was detaching or detached but they were able to fix it. But I think if she had waited, it would have been much more problematic. All I can tell you is, get it checked out. It's fixable if your retina is having problems, but do get it checked sooner rather than later - okay, end of lecture! :p
Google tells me that if the flashing light was constant or if there were "floaters" or a bunch of other symptoms that I do not have, then it is an emergency. But sometimes, I can go a week or more without seeing the flashy light out of the corner of my right eye.

You (and others) have now convinced me now that I should make an appt w/either my optometrist (who I've seen for regular eye exams, glasses & contacts since I was 18 yrs old) or the opthamologist who I've seen a few times (but I like her and she is very smart and thorough). I have to try to prioritize all of this stuff b/c my next IVIG is next Th & Fri (and then I will feel sick for 3-4 days recovering from IVIG plus have my dog back home at the same time and be taking care of her again).
 

Mary

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@Gingergrrl - something came to me last night. Have you been checked for CCI - cranial-cervical instability from your car crash? It could explain your neck and arm pain. CCI has been on my mind ever since I paid attention to this thread: http://forums.phoenixrising.me/inde...-a-cause-of-your-cfs.56908/page-8#post-976112

And in doing some research last night I came across this: https://www.ncbi.nlm.nih.gov/pubmed/16832263

Your symptoms appear to me to be a possible match for CCI. I wonder, if you do have CCI, if it could explain some of your other problems too since it can affect the brain so badly.
 

PatJ

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I just found some tips in my health notes file related to general pain but that might help with your neck pain:

DMSO, aloe, and mag oil; from Wayne on PR:
I have some chronic low back problems as well, but for the most part am able to manage them without too much undue pain and distress.

My main therapy is to combine DMSO (diluted with aloe vera juice to a 66% solution) and magnesium oil (1:1). It works really well to keep the pain and discomfort at manageable levels. The DMSO is great at reducing inflammation and improving circulation.

DMSO, from Wayne on PR:
DMSO (DiMethyl Sulfoxide) - A natural substance derived from trees, it's been studied extensively over many decades, and it's safety profile is remarkable. My understanding is i'ts widely used all around the world except for in the US. I've long believed that if it could be patented, it would be the number one selling drug. I also believe that if people knew about it's remarkable ability to relieve pain, there would be no current opioid crisis.

PEA, from a comment on https://www.healthrising.org/blog/2...-fibromyalgia-chronic-fatigue-syndrome-mecfs/:
Fantastic News! I have been in extreme pain for about a year (and stuck in bed). There’s been a question as to how much of the pain is CFS related, how much because of degenerative disc disease, and how much might be caused by something like MS. I have been using 3000 mg/day gabapentin and 75 mg/day baclofen (max doses for both). Even then, I was supplementing with small amounts of oxycontin (during the day, especially on days when I got in the shower) or carisoprodol (during the night). I was still having partial seizures (probably not associated with CFS?) related to the neurological symptoms and pain, and other pain related symptoms. I started to notice a slight but noticeable lessening of pain on about day 6 of emptying the PEA capsule under my tongue. The pain level has continued to decrease!!! Wonderful!!! I haven’t used any more oxycontin and I’ve needed less and less carisoprodol. And PEA works without any “fuzziness”, etc. or a prescription! These over-the-counter things are my favorite! No need to try to convince a doctor that I should try it.
 

Gingergrrl

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Isn't 40 the new 30? ;)
LOL :rofl:

@Gingergrrl - something came to me last night. Have you been checked for CCI - cranial-cervical instability from your car crash? It could explain your neck and arm pain. CCI has been on my mind ever since I paid attention to this thread:
I have not been checked for it but it is something that interests me to learn about more. I've known Jeff (from PR) for about 4 yrs and visited him in the hospital (in my city) prior to his surgery (at another hospital out of state) and his recovery is solid and nothing short of a miracle. I do believe that I have some kind of cervical stenosis (from the car accident) according to an MRI from many years ago but I no longer have a copy of that MRI results.

The major pain seems to stem from my arm (which was injured by Levaquin) so my shoulder and neck had to compensate for the arm for several years. I tried everything to strengthen my arm (starting in 2010 after the Levaquin injury) and literally saw about 13 doctors b/c I am right-handed and lost the use of my right arm for about 1.5 yrs... thank you Levaquin :mad:. So I am not sure that I have something like CCI vs. the core injury is to my arm and the pain goes up to my neck vs. the other way around. But I do not rule it out and I think an MRI (now eight years later) could be helpful as long as it can be done without contrast dye.

The only treatment that returned my arm strength (and overall muscle strength including my lungs and diaphragm) back to normal was high dose IVIG which proves the autoantibodies were weakening my muscles, separate from the injury. So I can now use my arm for whatever I need but I end up with severe pain, with the most severe in the area between my right shoulder and right side of my neck. The pain kept me awake most of the night in spite of wearing a Salonpas patch and using an ice pack.

I just found some tips in my health notes file related to general pain but that might help with your neck pain:
Thank you and I remember talking to Wayne in a PM a few years ago re: DMSO and deciding against it at that time although now I literally cannot remember why! It might have been b/c I was so allergic to everything at that time that I did not want to add in any other variables. I also remember being interested in PEA a few years ago but never pursued it or tried it. I just added them both to my long list of things to Google.
 
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I avoid "pain killers " for neck pain, whenever possible, because it would be better, IF POSSIBLE, to be trying to feel when the pain starts or gets worse at all, and to adjust, any possible neck positions or movements that worsen the pain, bcause they might be worsening it a lot, and once you identify them and practice changing to a different option, then you could lower the pain, much more than any of the meds do, has been my own experience.
I was diagnosed with cervical stenosis 18 months ago and rather sceptically went on a 'Pain Management' course. One of the useful things about was a technique similar to pacing in combination with what is suggested of body awareness. I find certain activities exacerbat the pain when I perform them for too long a period at a time. Working out what activities, body positions exacerbate pain and how long I can do each one before the pain kicks in. Then working out a 'window' of time for how long I can spend on one activity without it getting worse.

It has helped to manage the pain and stay on the lower dose of painkillers. Not a cure but a helpful strategy. Making sure we do no harm to our bodies is part of keeping well. You sound very determined and hope you find a way forward gingergrrl. Gentle shoulder shrugs help a little when my neck becomes tense. I have limited rotation but physio suggested doing what I can to keep the movement I have without increasing pain - and thus tension - in surrounding muscles.
 
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Thank you all for the new replies and I really want to respond but typing is too painful for my neck and arm right now and I'm trying to figure out what to do about it.

I get a lot of texts and am now just asking people if they'd mind if we talked on phone instead (unless it is a super brief reply). One of my friends thought I was mad at her until I literally explained that I am in too much pain to text on phone (I am at my desk-top computer now which is much easier).
Just a thought that if typing is a problem then voice recognition for IT is useful way of avoiding it for searching and using computers. Hope that the TENS helps.
 

Gingergrrl

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I wanted to add something to this thread that is actually helping my neck and arm pain. It is something that I did every day back in 2010 (after my arm was severely injured by Levaquin) but forgot all about it.

I am putting a full, unopened water bottle in the freezer so it becomes solid. Then I put it inside of a thin pillow case and use it as a roller. I sit at my dining table and roll my right arm (from wrist all the up to shoulder) on the bottle. I have no way to really roll it on my neck but I get as close to my neck as possible. It gets so cold, that it numbs the arm pain and is extremely helpful.

When done, I put the bottle back in the freezer to re-freeze for the next time and hang the pillow case to dry. I still don't know if the pain is predominantly muscle, tendon, or nerve pain (or some combination) but I know that very cold ice helps to numb it (and it's always inside of a thin pillow case and never directly on my skin).
 

Gingergrrl

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I was diagnosed with cervical stenosis 18 months ago
Were you diagnosed with cervical stenosis with an MRI and if so, did it require a contrast dye? I am trying to decide if an MRI is worth pursuing or if I can just assume that I have cervical stenosis and find someone to treat it.

I find certain activities exacerbat the pain when I perform them for too long a period at a time.
For me the worst is texting on my phone (vs. typing at my desk top computer like I am now is okay). I get a lot of texts every day and am now just telling friends that it is too hard for me to text b/c of my neck and arm pain and can we talk on phone instead (unless it is super quick and just requires a few words to reply). And I NEVER hold the phone to my neck and always put it on speaker phone, especially if I am on hold.
 
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Were you diagnosed with cervical stenosis with an MRI and if so, did it require a contrast dye? I am trying to decide if an MRI is worth pursuing or if I can just assume that I have cervical stenosis and find someone to treat it.

For me the worst is texting on my phone (vs. typing at my desk top computer like I am now is okay). I get a lot of texts every day and am now just telling friends that it is too hard for me to text b/c of my neck and arm pain and can we talk on phone instead (unless it is super quick and just requires a few words to reply). And I NEVER hold the phone to my neck and always put it on speaker phone, especially if I am on hold.
No I didn't need to have a contrast dye for the MRI. I was referred for this by a specialist physiotherapist (who took advice from a consultant) because I was getting pain down my arm and numbess in my hands. They wanted to see how bad the stenosis was in case I needed surgery of some sort. (The surgery would have been to keep the spinal discs apart).There is a possibility of permanent nerve damage if the boney bits are causing too much pressure. So personally I was very glad to have the MRI so that I knew what was happening.

I have found that managing it by learning what activities / positions make it worse is very important. Speaker phones are great! Limiting the amount / time on computer is also important for me.
 

Gingergrrl

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No I didn't need to have a contrast dye for the MRI.
That seems to be the consensus and I am thrilled that this kind of MRI does not require contrast dye which makes it a possibility for me in the future.

They wanted to see how bad the stenosis was in case I needed surgery of some sort. (The surgery would have been to keep the spinal discs apart).There is a possibility of permanent nerve damage if the boney bits are causing too much pressure. So personally I was very glad to have the MRI so that I knew what was happening.
I agree and I would like to know if I truly have cervical stenosis or if the pain/injury to my arm is at the core of my neck pain. I have had some improvements in the last two days using the frozen ice bottle as a roller (but I know it is not a long term solution).

I have found that managing it by learning what activities / positions make it worse is very important. Speaker phones are great! Limiting the amount / time on computer is also important for me.
I am okay with the computer where my neck is straight looking at screen and I am typing on a big keyboard. It is my phone (especially typing or texting) that adds to the pain. I am trying to do everything possible on my computer vs. phone right now but it is challenging!
 

Shoshana

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@pattismith and anyone else, who is interested.

After thinking about it for days, I finally tried that exercise (position) you suggested, even though I had serious questions about whether I could actually do it, without falling over badly. My physical limitations would prevent me from being able to break my fall, if I did.

It felt very powerful, and I am hoping it will help me.
I had to do it very slowly, and carefully.... and it was not "easy" for me, but it seemed so worth while to me, to try it.

I also had to get out of the position with extreme care, and that felt strong and challenging, also.
I had strong sensations, on both the doing, and during getting out of the position.

Afterwards, I went to bed! I feel like I had an adjustment that a chiro or massage therapist might do, and badly needed to rest from it.

Anyway, I wanted to share that i did try it, and am hoping it will be a help for me, even though it is more difficult for me to do, than would be for many people.
Thank you for your sharing about it.
 

Shoshana

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Thank you for replying and for your caring,
@pattismith

I did do it with extreme caution, as I will, the next time I try it. I am actually hopeful that it is positive for me, even though (and partly because ) it feels strange and powerful to my sensations.

I definitely will not do it several times a day, though, as you said you had. At least not for now.

I will wait and see, when I think I should do it a second time. For now, MAYBE even once every 2 or 3 days. I will wait and see how I think the effects effect me. ;)

Sometimes, a little is a lot, and it seemed like this for me.

But maybe later on, I might be able to do it more often. Or, not. ;)
I will wait and see how I think it feels for me.
I liked the idea and it went with my other ideas, so I am glad I did manage to do it, and to experience it.
:)
 

Shoshana

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I got a strong back ache, in the upper half of my back, a bit over 24 hours later.
:confused:
The pain area is Definitely NOT as high as my shoulders, and I do not know if it was related to that positioning stretch 'exercise' or not.
It might be from it, in a secondary way, due to my having to get myself into , and even moreso, to pull myself OUT of it, or from the position that resulted my back being in, in order to attempt the position.

Any input from @pattismith ?

I liked the effect on my shoulders and neck, and arms, :thumbsup:
but right now, I am not sure if my back will be able to do repeats.
:rolleyes:o_O

I probably will try it again, but not too soon, as I had hoped. I want to be sure my back recovers, first,
in case the "new" pain was from doing it.

I wanted to share that.
and also my thought that perhaps @Gingergrrl
and perhaps some other members , might not be able to do that position, anyway, due to the extreme head tip. It is a big effect. Which I still hope will be positive and possible, for me, to do more of, but it is not as easy as it sounded, for sure!:D
 

StarChild56

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@Gingergrrl - I am late to the thread and what I have to offer may not be useful but thought I'd share a few things in case they may apply to you:

1) I am a firm believer in good chiropractic care - but - after finding out my neck pain was due to compressed nerves I was told in no uncertain terms by my primary care doc NOT to have my neck adjusted. It could be dangerous. He was firmly FOR me getting chiro care until then.

2) I had an EMG and nerve conduction study, before my mri (w/o contrast) and it actually was far more helpful and showed more for diagnosing purposes. It showed that I had 2 (rather severe) compressed nerves and a few others that were not as severe. The mri did not show this (I did not have a giant bulging or collapsed disc which would have shown on the mri). This was in 2014. I had further problems because my ulnar bones are too long and that causes some pain and the only cure is to cut off the end to shorten them and/or try physical therapy to strengthen the wrist muscles to perhaps help. So I did nothing except some pool therapy (I also had lower back problems) and some physical therapy for my neck (limited, did help but not dramatic). Other medical issues popped up and took precedence.

3) Recently, my neck pain has exacerbated and went into my shoulder and arm (did not before) and having way more numbness and tingling. So I went to my primary care doctor (which was not a good experience) and after he wanted to do nothing, finally got him to try something which were - he had me take an x ray there, and he referred me for another EMG. He made sure to lecture me sternly that if I do this - then I will have to have either "a shot, or surgery". I'm just throwing that out there. But I'd gladly have the shots (even they are a "surgical" procedure as he made sure to tell me) to relieve the pain. And surgery, if it really were warranted.

In any case, I think an EMG and Nerve Conduction tests are a possible avenue to get information about where the pain is in fact coming from. Oh - he also stressed how painful the testing is (but again, I'd already had that testing so I knew although when I mentioned that he said quite sternly, "I don't see it."). So for me it was not terribly painful. Everyone has different pain thresholds and it can be different depending on the stimuli - for instance, you barely touch me anywhere on my back and it is extremely painful. But the EMG/Nerve conduction tests were definitely bearable.

Oh - just remembered. I live on my Far Infrared Jade Heating Mat. I use it all day, every day and it is the ONLY thing that helps the pain (I became allergic to my pain medication a year and half ago so can't take any). I have used nice, large, gel ice packs for my low back so if ice feels good to you, a nice gel one that does not get rock hard and you can bend around your shoulder/arm/neck might feel nice. I bend my heating pad over my shoulder. And far infrared actually penetrates deeper than regular heating pads and make you feel so much better, imo.

TENS is the other thing I use for my back - I got the smaller patches to try on my neck but I have not done so yet, not sure why.

I hope you get some relief soon.
 

Gingergrrl

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@Gingergrrl - I am late to the thread and what I have to offer may not be useful but thought I'd share a few things in case they may apply to you:
Definitely useful and we always have so much in common! Thank you for all the feedback.

1) I am a firm believer in good chiropractic care - but - after finding out my neck pain was due to compressed nerves I was told in no uncertain terms by my primary care doc NOT to have my neck adjusted. It could be dangerous. He was firmly FOR me getting chiro care until then.
Even though I saw a chiropractor for many years (since my original car accident), I have NEVER done neck adjustments and never will. I did traction, massage, TENS unit, ultrasound, heat & ice, and light PT type exercises. I think I did other techniques, too, that I am forgetting, but absolutely will never do neck adjustments b/c too dangerous IMO.

I have several chiro referrals that sound promising from a local PR friend but still have not had the opportunity to make phone calls. I am not comfortable going back to my former chiro and also am not sure he is the right one to help me so I am looking for someone new.

2) I had an EMG and nerve conduction study, before my mri (w/o contrast) and it actually was far more helpful and showed more for diagnosing purposes.
I did an EMG and NCT in 2016 to rule in or out LEMS b/c of my calcium autoantibody (which you and I talked about before) but it was not looking at neck issues. I had an MRI of the brain and spinal cord in 2010 (after my severe injury from Levaquin) but sadly I no longer have any records of it. I remember that it showed an issue with bulging discs (or possibly spinal stenosis) but I just cannot recall the exact terms. Regardless, it is eight years old and would not reflect whatever is happening now.

3) Recently, my neck pain has exacerbated and went into my shoulder and arm (did not before) and having way more numbness and tingling.
Is it your right shoulder and arm like me? I cannot tell at present which is the primary source of the pain (my arm or my neck)? I am not sure if my arm injury from Levaquin (triceps tendon) is causing the neck pain or if the car accident injury to neck is causing the arm pain. Most likely, they are both making each other worse.

But I'd gladly have the shots (even they are a "surgical" procedure as he made sure to tell me) to relieve the pain.
I would have a pain relief shot this second if I knew I was not allergic to it. I am not allergic to pain pills (like Tylenol or opiates) but I am allergic to aspirin and many NSAIDS. I am able to use Salonpas pain patches (from CVS) but they are pretty minimal in providing pain relief.

But the EMG/Nerve conduction tests were definitely bearable.
I agree, it was not pleasant but was bearable.

Oh - just remembered. I live on my Far Infrared Jade Heating Mat. I use it all day, every day and it is the ONLY thing that helps the pain (I became allergic to my pain medication a year and half ago so can't take any).
I added the Far Infared Jade Heating mat to my list of things to Google. This list is so long now but some day I am going to spend a whole day just sorting through it and reading stuff. I have a pretty good heating pad but it is just a regular one and not like you describe.

I have used nice, large, gel ice packs for my low back so if ice feels good to you, a nice gel one that does not get rock hard and you can bend around your shoulder/arm/neck might feel nice.
I have 3-4 of these type of gel ice packs that I use every night (and often during the day) on my neck and right arm. The pain is exclusively on the right side of my neck, right shoulder, and right triceps.

TENS is the other thing I use for my back - I got the smaller patches to try on my neck but I have not done so yet, not sure why.
I have a TENS unit (from my former Chiropractor) and I don't put the patches directly onto my neck but I put them on shoulder and arm. It helps a little in the moment but does not provide long-term relief.

I definitely need to find someone to help me with this issue but it has been so time consuming taking care of my dog after her back surgery and now doing her Rehab 2x/wk. But the pain is getting worse and I need to do something for it beyond what I am doing now.
 

StarChild56

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Definitely useful and we always have so much in common! Thank you for all the feedback.



Even though I saw a chiropractor for many years (since my original car accident), I have NEVER done neck adjustments and never will. I did traction, massage, TENS unit, ultrasound, heat & ice, and light PT type exercises. I think I did other techniques, too, that I am forgetting, but absolutely will never do neck adjustments b/c too dangerous IMO.

I have several chiro referrals that sound promising from a local PR friend but still have not had the opportunity to make phone calls. I am not comfortable going back to my former chiro and also am not sure he is the right one to help me so I am looking for someone new.
I hope you find a good one :)



I did an EMG and NCT in 2016 to rule in or out LEMS b/c of my calcium autoantibody (which you and I talked about before) but it was not looking at neck issues. I had an MRI of the brain and spinal cord in 2010 (after my severe injury from Levaquin) but sadly I no longer have any records of it. I remember that it showed an issue with bulging discs (or possibly spinal stenosis) but I just cannot recall the exact terms. Regardless, it is eight years old and would not reflect whatever is happening now.
It could prove useful to find out if it is from nerves being compressed, for sure!


Is it your right shoulder and arm like me? I cannot tell at present which is the primary source of the pain (my arm or my neck)? I am not sure if my arm injury from Levaquin (triceps tendon) is causing the neck pain or if the car accident injury to neck is causing the arm pain. Most likely, they are both making each other worse.
It does make sense that it could easily be both. No, mine is my left side which is better than right since I'm right handed. But I do notice when I do less - stay off my chromebook (so no typying), don't text/message a lot on my phone - it hurts much less and much less numbness and tingling (do you get numbness and tingling?). It starts up immediately upon typing on my chromebook. I also can't leave my arm down or hold up, I have to have it resting up a little on soft pillow or rolled blankets.


I would have a pain relief shot this second if I knew I was not allergic to it. I am not allergic to pain pills (like Tylenol or opiates) but I am allergic to aspirin and many NSAIDS. I am able to use Salonpas pain patches (from CVS) but they are pretty minimal in providing pain relief.
It would be a steroid shot. Are you allergic to steroids? I had one previously, in my other shoulder and it worked wonderfully. I never got another (did not need it - but it was a different issue). But it is done in a surgical setting which makes sense since they are going into your presumably spaces between your cervical vertebrae which is quite delicate (not finding the correct words but I hope my meaning is clear).


I added the Far Infared Jade Heating mat to my list of things to Google. This list is so long now but some day I am going to spend a whole day just sorting through it and reading stuff. I have a pretty good heating pad but it is just a regular one and not like you describe.
In case you want it, here is the link to the one that I absolutely love (and I have another of the same brand, but a medium mat and also a giant body sized mat, same brand):
https://www.amazon.com/Shoulder-Inf...&sr=8-9&keywords=utk+far+infrared+heating+pad


I have 3-4 of these type of gel ice packs that I use every night (and often during the day) on my neck and right arm. The pain is exclusively on the right side of my neck, right shoulder, and right triceps.
Oh, so the pain is not down the entire length of the arm? Mine is. My numbness and tingling is, as well - and my hand and fingers also.



I have a TENS unit (from my former Chiropractor) and I don't put the patches directly onto my neck but I put them on shoulder and arm. It helps a little in the moment but does not provide long-term relief.

I definitely need to find someone to help me with this issue but it has been so time consuming taking care of my dog after her back surgery and now doing her Rehab 2x/wk. But the pain is getting worse and I need to do something for it beyond what I am doing now.
I understand. Hope it gets sorted soon.