Recurrent Muscle Spasms LONG VENT

subee, MSN, CRNA · Aug 2, 2005

I know that this board isn't for medical advice, but I need to vent.
For the past several months I have had recurrent painful muscle spasms in the right side of my neck down to the bottom of my right shoulder blade. It started when I woke up with torticollis and could not get my neck to untwist. I have flexeril from an old sprain, but it didn't work so I went to the ER, was given valium and vicodin and sent home. I followed up with my primary care, who put me on Skelaxin TID, Naprosyn BID, and Soma at HS, with vicodin for pain.
It didn't work, a week later I'm still spasmed and twisted with huge knots on my shoulder, and now am having numbness and tingling in my fingers. I was placed on bedrest for a week with Soma QID, Naprosyn BID, vicodin for pain. After a week, I slowly was able to regain full ROM in my neck, I finally can move enough to have xrays of the cervical spine, and they are normal.
A month after that it I had sustained spasms in my right shoulder, and had to take Skelaxin TID, Naprosyn BID, and Soma at HS, vicodin for severe pain, it resolved after a week.
3 Weeks later I have spasms in my right shoulder/neck that resolve after 2-3 days on Skelaxin TID and Soma at HS.
2 weeks later I have severely painful sustained spasm in my right shoulder/neck I take my skelaxin, naprosyn, soma and vicodin. It gets progressively worse, it's the weekend, I can't get ahold of my primary care provider. Last night I took a soma, 2 vicodin, and couldn't sleep,( usually this knocks me out, or makes me act extremely sedated). I have deep pain in my shoulder joint, radiating pain to my elbow, and numbness/tingling in my fingers, pain on turning my head to the right when I touch my chin to my chest. My arm aches, but certain movements are painful, DH had to help me pull off my scrub top last night, and lifting my arm above shoulder height is excruciating, and every so often the muscles will spasm even tighter and I just have to grit my teeth
I see my PCP today, and he says that it doesn't seem like a herniated disk according to the previous Xrays from 2 1/2 months ago. We have no idea what the original injury was, I just woke up like this one day months ago and have been having problems since. He can't tell me an etiology, and in response to my statement that "usually i resolve after awhile on soma, becuase it's stronger, the skelaxin just gets it down to where I can think straight enough to work without being sedated", was to say that "we have something stronger than soma". He doesn't want to refer me for an MRI or CT scan.
So now I am on valium TID with vicodin for pain, and can take naprosyn or ibuprofen ( my choice, whichever seems to work better for me), and I will have Physical therapy with ultrasound 3x a week for 3 weeks. I still have to get in touch with my manager to find out what the heck I'm going to do about work, 'cause I can't go to work on valium.
I AM SICK OF HAVING TO CHOOSE FROM BEING IN PAIN OR FEELING SEDATED!!!!!!!!!
I am sick of my coworker's and even DH saying "maybe it's stress". I am stressed because IT HURTS and it's scary not knowing what the heck is wrong with me, and why this keeps happening. I can't figure out a rhyme or reason to the flares, it even happened on my honeymoon.
DH used to be in healthcare, and some of my friends are, and it's so frustrating because they just look at me and say, "you just need an outlet for your stress and it'll get better". I feel like they just look at me and think this isn't that serious( if it hurts bad enough that I can't sleep after taking vicodin and soma, it's serious to me). DH says, well you get grumpy, have a meltdown, and then boom your neck hurts. Actually I get grumpy because my neck hurts, and my ability to deal with frustrations goes down to nil if I dont' feel good, and then I have a meltdown and confess that my neck's been hurting.
If PT doesn't work, and this keeps happening, I will be then referred to a specialist and may have to get Botox injections, but my PCP is hopeful it won't get to that point, but we still don't know why this is happening.
Ok, I think I feel a little better for venting.

I can appreciate how painful this condition is. First, get rid of that PCP. Get thee to a neurologist. You need an MRI and a neuro exam. If the neuro. OK's it, get regular massages so that you can recapture that feeling, if only for an hour, what a relaxed neck and shoulders feel like. The mindfulness will help you lower your shoulders and keep them away from your ears. Don't lose hope. With the right care (and time), you can make your neck better. Don't wait because this is an awful way to live. Feel better soon.

elthia · Aug 2, 2005

I can appreciate how painful this condition is. First, get rid of that PCP. Get thee to a neurologist. You need an MRI and a neuro exam. If the neuro. OK's it, get regular massages so that you can recapture that feeling, if only for an hour, what a relaxed neck and shoulders feel like. The mindfulness will help you lower your shoulders and keep them away from your ears. Don't lose hope. With the right care (and time), you can make your neck better. Don't wait because this is an awful way to live. Feel better soon.

Thank you, I'm trying to find out if my insurance will cover a neurologist without a referral.

babynursewannab · Aug 2, 2005

Ditch the PCP. You should be able to sign up for a new one easily. At least that's the case w/most insurance plans.

This one is too into pharmacotherapy for your needs/comfort. And what's up with the not wanting to do an MRI????? Full diagnostic screening seems necessary for your case. And you certainly aren't a DSB candidate...you're straight out telling them you don't want more drugs.

A new PCP should have no problem referring you to a neurologist (which you most certainly need!) Do try and ask your current PCP for one, though. He may surprise you there.

Are you able to tolerate massage in the meantime? It might help relax the spasms a little.

I "sprained" my neck last week and had the EXACT same symptoms (same side, too -- scary) you speak of. I put it in quotes because I too have no idea where the injury came from. I was put on Flexeril and Skelaxin as well. Luckily mine cleared after 3-4 days. (Now I'm nervous after your post) Maybe it's a funky virus...

Good luck hon. Let us know how it goes.

-Alyssa

elthia · Aug 3, 2005

I'm still trying to work things out with my insurance company about the neurolgist.

gr8rnpjt, RN · Aug 3, 2005

This is just a suggestion, See a rheumatologist. What you describe sounds a lot like fibromyalgia, it is very common in the healthcare profession, your symptoms sound very similar to my own. Symptoms and "flares" can be brought on by stress. Theraputic or Medical massage with someone familiar with fibromyalgia will help. Also heat helps. I take one little pill at bedtime to help me sleep because my symptoms are much worse at night. Fibromyalgia appears to settle in the facet joints of the vertebrae and may be causing your symptoms. Just IMHO, but worth a try.

Depending on how long you have suffered with the pain, you may want to consult a pain management program also.

I definitely agree, the PCP has to go. Diagnostic testing should have been ordered.

babynursewannab · Aug 3, 2005

Now.. I'm with you on this. Fibro is nasty...I have it. But if her symptoms are like mine were last week? It is certainly not fibro. This particular problem feels like whiplash or a vertebral slip or a bad disk. Nasty SHARP pain. Honestly, I'll choose my fibro pain over that any day.

A rhuematologist is worth a gander, though. I obviously can't dx you and it never hurts to get checked out.

elthia · Aug 6, 2005

Now.. I'm with you on this. Fibro is nasty...I have it. But if her symptoms are like mine were last week? It is certainly not fibro. This particular problem feels like whiplash or a vertebral slip or a bad disk. Nasty SHARP pain. Honestly, I'll choose my fibro pain over that any day.
A rhuematologist is worth a gander, though. I obviously can't dx you and it never hurts to get checked out.

Well, I was at the point that I could do charge nurse, no direct patient care but I could do assessments, when an old friend came up on the floor. He didn't realize how bad my neck and shoulder were, and grabbed me from behind. I almost blacked out, then it hurt so bad I had to go home, ( he still feels terrible, but it's not really his fault). ( one of my coworkers was really upset, "why didn't you take your pain medicine before you came to work? " I'll take anything BUT the narcotic pain meds and the controlled substances at work, and at that point I NEEDED the narcotics, I was in tears because it hurt so bad.)

I went back to the clinic yesterday, and had xrays of the shoulder, which are negative, and I'm awaiting an MRI, there are no appts available, but my PCP is trying to get me worked in.

I'm to do nothing but lay around the house and take valium TID for the entire weekend, with vicodin PRN. Needless to say, I'm bored and frustrated.

What I can't understand is that when I first wake up, the pain is not that bad, I can dress, eat, type on the 'puter, but it gradually gets worse and worse, and then by 8 pm it hurts so bad that even with my pain meds I can't even undress myself, and I can't use my right hand to eat with, I have numbness/tingling and radiating pain down the arm. DH says that by nighttime the knots on my shoulder, neck, and subclavian are 3x the size they were when I woke up and the entire area feels hot to touch.

Certain ROM exercises hurt worse than others also, I can move my neck or arm one way and I'm fine, move it a different way and I feel stabbing pain.

Emma123 · Aug 6, 2005

I'm so sorry to hear about what you've been going through. I have been there. I read your post and I could have written it myself. I have dystonia, and also had Thoracic Outlet Syndrome caused by having an extra cervical rib. Neurological TOS is becoming more recognized, according to my neurologist. I am in no way dx'ing you; just telling you that my pain was exactly like yours and what it ended up being for me. I ended up having the cervical rib and first rib removed in December. The spastic muscles had pulled the first rib and clavicle together, pinching off the brachial plexus (major nerve bundle), causing all the nerve pain you mention as well.

I still have regular spasms and am being tx'd by a neurologist on a regular basis. Last Monday I found myself in the ER with the same problem (torticollis), which may or may not be related to the Dystonia I've had for the past 4 years.

Botox seems to help, if done by EMG guidance, for muscle spasms. Getting it "right" sometimes takes a few visits. Too few or too many units, or not the correct muscle injected all have a factor in how beneficial it is for the spasms. They last about 3 months, and can take a couple of weeks sometimes to notice relaxing of the muscle (remember, everyone is different though).

I have a NUMBER of websites for self care on massage pressure points, info on RSI's (repetetive strain injury), you name it. I would be happy to post them if you like, as long as it's allowable here.

I, too, was given a shot of valium and dilaudid and told to follow up with my neurologist. I was (thankfully) fit in on the same day, and he rx'd Lortab for the pain. I also take Zanaflex as a muscle relaxant. If you ask me, I think muscle relaxants tend to "not work as well" the longer you are on one. I've been on Flexeril (didn't help me much), Valium (worked wonders, but no doc wants their pt on benzos for long term spasicity), Skelaxin (no help to me), Soma (made me feel sedated, but not relieving the pain), and now Zanaflex (dry mouth and sedation biggest problems, but overall it helps).

Additionally, I'm not sure if you get HA or not, but I had gotten Occipital Neuralgia from the muscles being so tight in my neck (ha that causes pain in the back of the head, and refers to the eye/s quite frequently). A quick nerve block resolved the ON, but still have the spasms.

I am not sharing this with you to complain (LOL), but to let you know what tx's I've tried, that may or may not be of help if you find yourself with any of these dx's.

Moist heat and rest of course. Also watch your POSTURE. Have a PT evaluate your posture. Is your head slightly forward or is it centered over your shoulders? (I used to be a PT assistant at a pain clinic for years....)

Good luck to you and if you need to vent or have any questions let me know. I, too, got the "oh it must be stress" lecture several times, when in fact I had gone through a heck of a lot more stress in my 20's without this PAIN. Go figure, the stress tactic. Been there, heard that.

I would agree with the above posters in that you should get to a neurologist or a physiatrist for an EMG and a NCT. They can evaluate nerve impingement, yadda ya....But they are also VERY HELPFUL in my case for tx'ing pain.

I have had spasms for so long now that if my next Botox tx doesn't help I'm going to request a change in my muscle relaxant (again) . Maybe someone on here knows more about the pharmacology aspect of muscle relaxants than I do, but from my own body's perspective, they tend to not work as well after being on them for a while. ? Who knows.

I'm starting my ADN program in 3 weeks. All of my pre-req's transferred, so just theory/clinical. JUST....LOL who am I kidding....

Take care and watch your posture in the meantime. We health care workers, because we work "forward" tend to get these types of pains/problems moreso than others.

Healing hugs

Emma

Emma123 · Aug 6, 2005

Forgot to add:

If you are going the Phys Therapy route, ask them about gentle nerve glides and gentle stretches. When stretching, go to tightness. Stop before the pain. Also, ask about modalities such as E-stim, moist heat, and ultrasound. E-stim works nice for pain, but is temporary...but a break from the pain is nice. Ultrasound works like heat does, except it goes deeper. I've had good results with pts using ultrasound. Some don't report any relief. Again, everyone is different.

Also, progressive muscle relaxation can be helpful too.

A good position to relieve pain (for me) is to lay on my back, palms up. If it bothers the back, then you can put your knees up. This essentially provides a "crutch" for the spine. Laying in this position is good for the spine and offers good pain relief.

Don't do any of these without talking with your PT, though, even though these are pretty "standard" tx for cervical pain.

Good luck to you & hang in there.

Emma

elthia · Aug 7, 2005

so far today has been a good day, but I've only been up for a few hours. If I stay on the valium 24 hours a day, it's bearable for half the day, then I need to start taking vicodin once I start doing my stretches and exercises that PT wants me to do. I've been off work going on 3 days now, and I've been on valium almost the entire time, and I do have a lot more ROM in the neck and R arm, it still hurts to lift anything over 10 pounds with the R arm, but I can dress myself again.

I go back to work tomorrow, and so I won't be able to take anything but naprosyn and ibuprofen tomorrow.

The problem is I really hate what the valium does to my mental status. I get fuzzy headed, I can't make a simple decision, I actually bore easily because I can't concentrate enough to read, and I love to read.

And I'm getting really depressed, I've been independent and on my own for years, I took care of my bachelor father as a teenager, I've always lived on my own, put myself through school, etc. I never married until I was almost 30. This dependency is really driving me to tears. DH is caring and wonderful, and isn't forceful, but if I do housework or anything and then moan, grimace, or whatever, he takes over and says "should you really be doing that? Quit aggravating it and let it heal". I'm bored and feel useless. And then I just tell him, leave me alone for a moment, I need to wallow in self pity for awhile, I'll be back to my normal self in an hour or so.

Hopefully the MRI can get done next week. I can't live like this much longer.

krob0729 · Aug 7, 2005

I know that this board isn't for medical advice, but I need to vent.
For the past several months I have had recurrent painful muscle spasms in the right side of my neck down to the bottom of my right shoulder blade. It started when I woke up with torticollis and could not get my neck to untwist. I have flexeril from an old sprain, but it didn't work so I went to the ER, was given valium and vicodin and sent home. I followed up with my primary care, who put me on Skelaxin TID, Naprosyn BID, and Soma at HS, with vicodin for pain.
It didn't work, a week later I'm still spasmed and twisted with huge knots on my shoulder, and now am having numbness and tingling in my fingers. I was placed on bedrest for a week with Soma QID, Naprosyn BID, vicodin for pain. After a week, I slowly was able to regain full ROM in my neck, I finally can move enough to have xrays of the cervical spine, and they are normal.
A month after that it I had sustained spasms in my right shoulder, and had to take Skelaxin TID, Naprosyn BID, and Soma at HS, vicodin for severe pain, it resolved after a week.
3 Weeks later I have spasms in my right shoulder/neck that resolve after 2-3 days on Skelaxin TID and Soma at HS.
2 weeks later I have severely painful sustained spasm in my right shoulder/neck I take my skelaxin, naprosyn, soma and vicodin. It gets progressively worse, it's the weekend, I can't get ahold of my primary care provider. Last night I took a soma, 2 vicodin, and couldn't sleep,( usually this knocks me out, or makes me act extremely sedated). I have deep pain in my shoulder joint, radiating pain to my elbow, and numbness/tingling in my fingers, pain on turning my head to the right when I touch my chin to my chest. My arm aches, but certain movements are painful, DH had to help me pull off my scrub top last night, and lifting my arm above shoulder height is excruciating, and every so often the muscles will spasm even tighter and I just have to grit my teeth
I see my PCP today, and he says that it doesn't seem like a herniated disk according to the previous Xrays from 2 1/2 months ago. We have no idea what the original injury was, I just woke up like this one day months ago and have been having problems since. He can't tell me an etiology, and in response to my statement that "usually i resolve after awhile on soma, becuase it's stronger, the skelaxin just gets it down to where I can think straight enough to work without being sedated", was to say that "we have something stronger than soma". He doesn't want to refer me for an MRI or CT scan.
So now I am on valium TID with vicodin for pain, and can take naprosyn or ibuprofen ( my choice, whichever seems to work better for me), and I will have Physical therapy with ultrasound 3x a week for 3 weeks. I still have to get in touch with my manager to find out what the heck I'm going to do about work, 'cause I can't go to work on valium.
I AM SICK OF HAVING TO CHOOSE FROM BEING IN PAIN OR FEELING SEDATED!!!!!!!!!
I am sick of my coworker's and even DH saying "maybe it's stress". I am stressed because IT HURTS and it's scary not knowing what the heck is wrong with me, and why this keeps happening. I can't figure out a rhyme or reason to the flares, it even happened on my honeymoon.
DH used to be in healthcare, and some of my friends are, and it's so frustrating because they just look at me and say, "you just need an outlet for your stress and it'll get better". I feel like they just look at me and think this isn't that serious( if it hurts bad enough that I can't sleep after taking vicodin and soma, it's serious to me). DH says, well you get grumpy, have a meltdown, and then boom your neck hurts. Actually I get grumpy because my neck hurts, and my ability to deal with frustrations goes down to nil if I dont' feel good, and then I have a meltdown and confess that my neck's been hurting.
If PT doesn't work, and this keeps happening, I will be then referred to a specialist and may have to get Botox injections, but my PCP is hopeful it won't get to that point, but we still don't know why this is happening.
Ok, I think I feel a little better for venting.

darlin', get rid of that PCP. one who doesn't know what's wrong, but won't order an MRI or ultrasound???? wouldn't that show if you had a nerve pinched or something? i've only been a nurse a couple of months, but my common sense says that you should have these before PT. What if PT makes it worse because of something hidden that they could have found on MRI or US? just my 2 cents. good luck, hope you feel better soon...

P.S always remember the old saying of "get a 2nd opinion"