DOES ANYONE HAVE SPASM-LIKE PAIN IN NECK?

[ps103]

My neurologist says many people with MS have this very typical pain.  Since she could not help me I went to an RA specialist who gave me a cortizone shot in neck/ no difference.  Then I mentioned this to my dentist- no help.
I then went to a pain specialist who did acupuncture on me 4 times but since I can touch the exact spot where it hurts on the bone behind my left ear it hurt doing the acpuncture so the doctor suggested I quit after 4 times.
My neurologist put me on Cympbalta NOT for depression but for neurological pain but it's not working.

Anyone out there have a suggestion for this kind of pain?  I've had MS for 16 years, retired, use a walker to get around,and also take med for have restless leg syndrome.  I'm doing okay except for this PAIN.  PS103

[Cynthiaa89]

I've not been diagnosed with MS, but I get the pains you are describing almost daily.

[1AJ1776]

Is it like a shooting almost electric pain on the side of your neck? Bc I have had that off and on for almost a year now.

[HVAC]

You might need muscle spasm medicine like Baclofen or Zanaflex. Does the pain go into your arms and hands?

[Debmcmill]

I am so happy to see this. I have the same problem with my neck! I don't know what is causing this but it is painful. After a neck spasm I feel so exhausted and covered in sweat.
I have been diagnosed with reoccurring bells palsy. This round of bells palsy I started having the muscle spasms. I told my doctor and was prescribed medication. I did not get better with the medicine. On the follow up visit I informed my doctor that it wasn't doing anything for me. That's when I found out that "medicine" was in fact a placebo. He thought it was worth a try. I felt so betrayed, insulted and angry.
My doctor sends me back to my original neurologist that I did not want to see. But I went anyway. Big mistake.
This neurologist accused me of being on meth.
No one had even done blood work on me or test since my first episode of bells palsy, which was in 2012. Yet, this person accuses me of being on drugs.
I was so furious. I asked the neurologist what about blood work on me and test instead of accusations. Then it got worse. That doctor handed me paperwork to get blood work done, I thought yeah, finally. Until I looked at the paperwork. She ordered an illegal drug screen panel 10-20 and ethanol levels. Again, betrayed, angry beyond words. I sat in my car and cried I was so angry.
Now I'm at a new neurologist so I'm hopeful now.
I don't know what is happening to me but this doctor listened to me without insulting me. Yea!! And then I found this comment online. I'm not alone in whatever is causing this to me. I'm not crazy. And I am not on drugs.
Thank you.

[suspiciouscombo]

Very interesting as I read this since I've had neck and shoulder pain for years now. Always attributed to DDD (C5 & C6 bulging) but physicians claim that it's not severe enough to cause this type of discomfort.

Every time I read experiences such as the neck etc issues it causes me to become more suspicious about MS. I certainly understand how people feel with chronic pain now.

[jensequitur]

I get spastic pain in my neck often, but so far it's been in a place that i can massage.  Most recently the muscle to the right of the windpipe has been acting up - it hurts to swallow on that side.  I can find the place pretty easily, and press on it until it relaxes.

[sllowe]

Hi there Ps103,

Hello to you, and welcome, I'm glad to have another veteran MSer on the forum to help us all out.  I'll probably not be able to help, but wanted to let you know that I always have neck pain. Sometimes worse than others, but always there.

Mine is in the back of my head, left side of my neck and travels down my arm when it's really bad. I don't know if it is skeletal or MS related. I have also had a cinched up feeling between the base of my neck and shoulders (both sides). No spasms though, just cinched up feeling w/out the horrifying spasms.

I've not experimented with any meds for it but do take a naproxen at night along with my baclofen which seems to ward it off long enough to sleep, though on the other hand when it's really bad, nothing helps to relieve it.

I'd be interested to know what it is specifically so it can be treated.  

Are you on any baclofen or anything for spasms? Or any DMDs for your MS? I was prescribed Lyrica for parathesias, but didn't end up filling it. But have heard that works too for some

Again, welcome, looking forward to seeing you around,
Shell

[Trace420]

No, the tests for RA have come back negative. The tests for EVERYTHING have come back negative, lol. My brain MRI shows absolutely NOTHING atypical, not even any tiny lesions that could be attributed to migraines, which I do get.

I have my first neuro appointment in a month, though, so maybe he'll be able to think of some other possibilities.

I hope you find something out and find a way to treat the pain.

[ChunkyMonkeysMommy]

Well, I wish I could help you. I should be able to, except my brain is failing me at the moment. I had something like this once, but it went away (Maybe I was in a relapse? I was undx'd at the time.). I had a doctor give me a name for it, but I can't remember what it was or what he had me take for it. Although, mine wasn't EXACTLY the same. My neck actually stayed in sort of a constant spasm, where it didn't release and I looked like my head was somehow attached to my shoulder, lol. But, again, I wasn't diagnosed at the time, so who knows if what he told me it was was even correct. I wish I could be of more help!

[ps103]

No, mine is spasm-like - when I have one I actually push on the bone with my left hand and tilt my head left and sometimes it goes down into my hand.  I actually look spastic!  Ha-  It usaully happens every couple of minutes.  I mentioned to my acpuncturist once that it seems to get worse when I'm dehydrated or thirsty.  He's an MD and he said, "there may be truth to that because women don't hold as much blood in their brain stem as men do."  Maybe I've not been drinking enough water the last few days- it does seem worse.

Do you think you could have arthritis?  Sometimes an RA specialist can give you a cortizone shot for that and will help for months.  Hope you can get help for yourself. PS

[Trace420]

When you say spasm-like, do you mean it comes and goes, cramps and relases? Or remains pretty constant? Because I've had kind of a constant pain for years - like a muscle cramp that never fully goes away. One side will be very, very stiff and painful for a week or two, and then the other side will be very, very stiff and painful for a week or two. But even the side that is not the really painful side will remain fairly stiff.

I haven't been diagnosed, though. Your question piqued my interest because I always hear that muscle pain is indicative of fibromyalgia, but I'm pretty sure that whatever I have, it isn't fibromyalgia - I have no tender spots. Plus, whatever is happening has been happening for years and has clearly gotten worse. So I'm really curious to hear if we have the same kind of pain and what other people say about it.

[Shirley1976]

I HAVE THE SAME AS YOU, I HAVE CONFIRMED MS AND FMS, I AM LOOKING FOR TREATMENT FOR IT BUT ITS SO HARD

[Lulu54]

Hi PS,
I am so sorry to hear you are experiencing this extreme spasm pain.  I have no first hand experience with this type of pain, but I  know at least one of our members does.

ShadowsSister (DJ) has had MS for over 20 years and has a morphine pump implanted for over 12 years.  She just had the pump replaced and is on the mend.  Watch for her on the forum and perhaps she can give you some tips or at least answer you if you would like to know more about the pump implant.

Anyone else able to help?

here's hoping you can find relief,
Lulu