Sternocleidomastoid ...Or????

[Kathi49]

Hi you guys,

I really need to vent this morning as this is starting to confuse and concern me and I am trying to sort it out. I have read just about everything I can on the sternocleidomastoid, dystonia and/or torticollis. The latter two don't SEEM to apply as my neck isn't contorted and pulling in different directions. But I have ALL the symptoms of Sternocleidomastoid Syndrome. I am just second guessing because I really have no clue. All I really know is that the occipital area and the SCM's were tight while in PT. BUT...PT seemed to make things worse and is why I got the trigger point injections. Honestly, I wish I had stayed away from PT...I just went from bad to worse. But I was trying to follow through with what the NS suggested.

I posted a couple of days ago about severe dizziness the other day and how my head was ready to explode. At that point in time it felt moreso like the occipital area. But yesterday...I wanted to rip my throat out! Around the base of my throat it just felt like someone was strangling or choking me and then at the base of my skull...tighter than a drum! Anyway, there really wasn't much pain...just tightness. I sometimes think this is the higher cervical levels and at other times I think it is muscular.

Sooo...yesterday I had made plans to go and see my daughter's apartment. I had my sister go with me. As you know I HATE Interstate driving. And I hate it because it really messes with my eyes or vision and probably due to all this crap. I just kept feeling my head jouncing around but I made it to her place. But damn I was sick (pardon me)...just so nauseated from it all. Okay, okay, I shouldn't have been driving. But I DID have my sister drive back. I will NEVER do this again!!! I am sooo mad at myself and scared at the same time. So, this does it! It took me several hours to recuperate. In the meantime my sister was freaking a bit...couldn't believe just driving made me so sick. But she also knows what I have been through so thank goodness she was with me. On a lighter note...my daughter's apartment is very cute; she's done a great job with it. But she also drove to go and eat. I just couldn't eat at all. I ended up telling her that the next time I come out to see her...someone else will be driving and that's all there is to it.

Sorry for rambling. I suppose my question is...what is the treatment for this??! From what I have read it is even more PT and stretching. But that is what makes me worse! And my mind is running wild with crazy thoughts...like my carotid arteries are being compressed or that vagus nerve is doing something...God knows what? Anyway, I ended up just wrapping my neck with heat to try to loosen it up. I didn't take a muscle relaxer of any kind because those make me sick too on top of dizziness. So, I am at a loss other than to go back to my PM and talk about all of this.

[slipnslide]

Kathi,

I looked up the Sternocleidomastoid thing and got side tracked:o ....lol....but, while reading "off topic", I came across info. that might interest you. I'm not sure if it covers all of your symptoms, but noticed that it covered the ones I could remember.:)

hope this helps....http://fibromyalgia.ncf.ca/dsheadac.htm or http://www.fibromyalgia-symptoms.org/fibromyalgia_mysofacial.html

[Rozia]

Kathy where do you come up with these things. I tried to google it too and was totally lost. Hummmmmm isnt it a trapezius muscle.

[Kathi49]

Kim,

Thanks! LOL It took me awhile to digest it but, yep, makes sense to me. :) The visual disturbances, occipital pain, dizziness, etc. is how it all BEGAN a few years ago. But I still wonder if the upper cervical levels; especially the C2/C3 aren't the culprits for some of it. Oh, who knows anymore lol. :D

Rozia,

I didn't dream this up. :) While in PT the gal said the sternocleidomastoid muscles were tight. But also...everything else! :eek: I know all of them are connected in some way but this book I am looking at looks like it comes up from out of the front around the pecs and then attaches behind the ear.

[Mark N]

Kathi, I missed this yesterday as I was off-line much of the day. How are you doing by now? I hope you are feeling a bit better and yes I would talk to my NS about this. One of the problems with the net is we can find thousands of things it could be but deciding which one is the right culprit is difficult.

[BrokenBladder]

Kathi,

Wow what a big word!!:) I hope you wake up today feeling better. I know how frustrating it is to hurt and try to figure out on your own what it is. :(

[Kathi49]

Thanks you guys,

Mark,

LOL! I did talk to my NS about all "those muscles". That's why he sent me to PT. :) Remember when I said that my whole neck just clamped down. No, seriously, it was the PT who said or showed me all the ones that were tight and she said...all of it is connected. If you google on that "long word" or syndrome rather it DOES mention severe vertigo, nausea and visual disturbances. Seriously, those upper cervical levels and muscles and what not can cause dizziness and that was what was happening on Saturday.

Sooo...yesterday I just kept using moist heat all day long and stretching. There are two exercises, out of my handbook, that help with those SCMs. One is to rotate your head clockwise and counterclockwise. The other is just to GENTLY pull your head left and right. I did these two all day long! :) But I had to be careful because stretching too hard will aggravate things. And last night I just wrapped my neck and upper back with moist head and laid down to let it all soak in and relax. And I forgot...all day long I was telling myself, shoulders down and back, head back (NOT head forward)...just watch the posture! Geez, that's hard...I mean to keep trying to remember it! Plus, I did some light massage of my own. But you have to be careful with that too.

Anyway, it is a bit better this morning...at least I don't feel like I am being strangled and the occipital area is a bit more loose. I do remember my NS's PA telling me that it is VITAL to keep those muscles loose yet strong. And then recently my PM said something to the effect that he never really thought these muscles could just contract as bad as they do. He said he was experiencing it himself lately. So, I will just keep up with the moist heat and stretches for now. And yes it is tough to determine if it is certain cervical levels or muscles or BOTH.

[BrokenBladder]

Kathi,

I'm sorry that I don't understand the sternocleidomastoid muscle issue that you're having.

However you and I both know how many muscles are involved in the pelvic floor area and how difficult that is to deal with.:eek:

I do hope that you're feeling better today and can get some answers about the PT. You had success with that in the pelvic floor are when I didn't, but it sounds like it's making your neck worse.:(

I'm sorry and hope your day improves!!:) ;) :)

[Kathi49]

Lisa,

It's okay. :) I am done with the neck PT but I do think it aggravated some things. And, hey, the pelvic floor PT was the best thing I ever did LOL! I am sorry it didn't help you but I can also understand why it didn't. :( Anyway, I thank you. Hopefully, this other will subside even more.

[Kathi49]

Okay, so you all won't think I am nuts...:)

www.round-earth.com/SCM.html

See if this helps to explain it to a degree. :) And notice it mentions occiput. And why I said I was dizzy and wanted to rip my throat out.

[BrokenBladder]

Kathi,

Thanks for the link but I never thought you were crazy, LOL!!

It looks complicated to me. but then again that's not a problem that I have.
I hope you get some relief soon.

BTW, alot of people think I'm crazy with all the crazy stuff going on with me, LOL!!

[Kathi49]

Thanks Lisa.

I know you didn't think I was crazy. I think I just FELT crazy. :) Ugh, the neck and all that business is just too intricate for words LOL! So, don't feel bad...it just one of those things that can't be seen. BTW, I went to a retirement lunch yesterday and don't get me wrong, not bragging, but all the girls were saying...you look good, etc., etc. which was very nice of them. But, I busted out laughing and said, "I feel like crap!" LOL So, one of them says, "Well, you sure don't look like you have pain." (Yeah, right, I was rubbing the back of my head the whole time!) Soooo...you know how it goes. ;) Anyway, the ONLY reason I went is because I have been friends with one who is retiring for a long time. I just made an effort to go for her sake. And thank goodness it wasn't far away; very close to where I live. Anyway, that's ALL I said because I didn't want to detract from her special day. But as a side note and based on Mark's past posts...we had some very interesting conversations about retiring and "fullfillment". It was pretty neat to hear the different viewpoints. :) I did laugh at the gal retiring. She said she thought about returning as a contractor; but that only lasted for two days and then she was "over it" LOL! Sorry, didn't mean to get sidetracked. It is just that I know you can feel so bad all over but STILL keep pushing.

[Mark N]

Kathi, it must help that your PM is having similar muscle spasms. At least he should understand and like he told you he never knew it could get that bad. Glad to hear you are getting a little relief but you need some major relief. I hope it is muscular problems that are causing your returning headaches and vertigo.

[Kathi49]

Thanks Mark,

As of this morning, I at least now know it isn't my carotid arteries as there were no "bruits". :) Heart sounds good (even though I have tachycardia), lungs are clear...that sort of thing. I still have to take a stress test and he wants some bloodwork done for cholesterol. It was a bit elevated when I saw my GP but not bad enough to put me on something. And, this is funny, the cardiologist wants me to do the 24 hour holter. I want to say halter but it is spelled holter. At least it will give them an idea of what is going on when sleeping if anything. I just think he wants to be thorough based on my brother's heart disease, my dad's heart disease and heart attack and my mom's extra heartbeat (forget the medical term for that).

But...and I have NEVER heard this...

He wants me to increase my SALT intake! I wonder if drinking so much water is flushing out all the salts? LOL! Heck, I don't know! He just said it would help with dizziness but he also knows of the spinal crud. Anyway, interesting appointment...bloodwork (tomorrow); stress test next Friday. I have had one before...no biggie...it just makes my back ache a little more is all.

Oh, and thanks about the PM. I THINK what he meant was the muscle just contracting on their own no matter what you do (stretching) to try to prevent it. At least that was my impression.

[terrapin_station]

Personally, I believe you. You and I both know that cervical infarctions can and do cause dizziness, pain, visual problems.

This may be a bit off topic but what bothers me is why everyone thinks that when you have these problems they are always going to follow the predetermined norm. Just because symptoms are atypical doesn't mean that it isn't caused by a cervical abnormality. Most health care practitioners are taught in school that a certain condition will only react a certain way and that's it but you and I know different.

A c3-c4 herniation can in some rare situations cause lower limb problems in addition to the standard ailments.

[Kathi49]

Terrapin,

I agree and I THINK you are speaking of the dermatomes. I laugh sometimes because the C3/C4 supposedly refers pain downwards....but it didn't on me...not at all! :) Ugh, don't get me started on that. I went round and round with an NS once over all this. He flat out said...no surgery until you show neurological deficits. Then when my current NS saw what was going on, he was flabbergasted. I have said this before too...you could NOT see the nerve roots at all. And I had a friend who needed a C5/C6 fusion. He NEVER had pain in his arms, hands or fingers at all! He would just fall down. :eek: Anyway, I think we are all just wired differently. But over time I have just come to accept that anything going on in the cervical spine can do what it wants LOL! So, here I sit with a fused C3/C4 and C5/C6 with bad occipital pain, aching upper teeth and inner ears! Geez, even though it hurts I have to sit here and laugh and think...what now! :) Although I do think it is the C2/C3 in my own opinion. Now...watch me be wrong and it is another level. :eek:

[BrokenBladder]

Kathi,

I hope you awake this morning and feel better. I hate to see you in so much pain. Take care and keep us posted!!

[Kathi49]

Thanks Lisa!

I am doing okay this morning but I am sure it will crank up during the day. :rolleyes:

[BrokenBladder]

Well I suppose if there is an upside to this it would be that you have at least part of the morning before it hits you full blast.

When do you see the doctor again about this? It seems like something should be done for you ASAP as I don't believe that anyone should live day to day in misery.






;

[Kathi49]

Lisa,

My PM did the trigger point injections about two weeks ago. But I do have an appointment with him on November 5th.

[BrokenBladder]

Kathi,

I'm glad to hear that your appointment isn't that far away. Hopefully he will be able to help you. Take care today amd don't overdo it.

[Sara1979]

I have Torticollis. My SCM is covered in scar tissue at this point. (I have had it cut a few times because it was causing a severe tilt). If you touch it, it is like touching a rock. I get Occipital Pain, Pain that refers to the top of my head, Nausea, Dizziness, Vomiting when it is bad enough. I can't really drive and only drive when I absolutely have to. Botox can help the pain in the Occipital Area. My range of motion is about 30%.

I hope you can find some relief. Pain generating from the SCM really sucks to be ineloquent.

[Kathi49]

Sara,

I am sorry you have Torticollis but am glad you understand what I am speaking of. :) I swear I wanted to rip my throat out the other day. And ditto, ditto, ditto all the symptoms. The only reason I don't vomit is because I have some Phenergan. And driving? It is almost impossible when in a flare. I HATE it, like this morning, when I HAD to drive to the hospital...my head was killing me. But at least it is just down the road from me...about 5 minutes. I haven't had Botox injections. But as in the past and just recently have had trigger point injections in my scalp and neck. Anyway, the SCMs seemed to have calmed down...at least for the last two days anyway. It is my bowling ball of a head that hurts. When I wash my hair it just feels like every bit of skin is drawn tight...sort of like the SMC's were feeling. And those SCMs felt so tight like I was being choked. It's a feeling that if everything would just let go or loosen up, I would feel better.

Anyway, the doc was telling me today...probably coming from the cervical spine which I basically already know. :rolleyes: I do have a PM appointment coming up and I want to see what he has planned next or what he thinks. You are right though...this sucks.

[Sara1979]

EXACTLY!!! I am sorry you are feeling this way but it is nice to talk to someone who understands. My head feels like a huge bowling ball that weighs 50 pounds sometimes. I have problems swallowing too. Sometimes I will be eating and basically choking it's gross because I have to basically cough it up and spit it out. Very nice for a restaurant.

I only drive when I absolutely have to. I have learned to look by turning my shoulders but that causes shoulder pain so it's a double wammy. I am really lucky I work from home and am not dependent on my income. A simple 10 minute drive can have me screaming in pain.

My spine is really screwed up too. I have Kyphosos, Scoliosis, Lordosis, and arthritis and I am scared to even find out what else. Which in turn screwed up my hips so I have SI Joint Dysfunction. I can't even remember what they diagnosed my shoulder with but my right hand goes numb a lot. My handwriting is ridiculous.

I take a lot of Phenergan too. I had to stop the botox injections because they were causing excruciating pain two weeks after the injections which luckily is a very rare side effect but it did help with my range of motion and made me feel looser. I have to do some light stretching everyday or I wake up the next day and feel like I can't move my head.

The worst is when people ask stupid questions like "Did you just get into a car accident." I am like "huh" and they say "Your next is twisted and looks really tight." I am thinking wow, thanks for the reminder that it's visible. Plus my face is asymmetrical. My Torticollis is actually congenital but it wasn't treated when I was a child so I have all of the problems and some extras from the adult form which is Spasmodic Torticollis.

Baclofen can be really great if you can tolerate it but it caused me to gain 10 pounds in a month. Right now I am taking Klonopin and Valium for breakthrough spasms and Oxy for the pain. If you can see a Physical Therapist that does Myofascial Release or Cranial Sacral it is a lifesaver. It's just a really gentle stretch they perform it especially helps with the Occipital Pain which can really be a misery. Nothing like the feeling the someone just whacked you with a baseball bat.

I also saw an Orofacial Pain Specialist which was really helpful. He taught me some different techniques like breathing in different areas of my body to take the most pressure of the system that regulates this type of pain.

He recommended the book "Fibromyalgia and Chronic Myofascial Pain it has a lot of great information. Particularly, about the referred pain from the SCM. It's really interesting how that one muscle hits so many different areas. The pain on the top of my head gets so bad sometimes I feel like shaving my head even though that is silly but my hair feels like it weighs 30 pounds some days. Unforunately, it is really hard to find a Doctor that is experienced in treating this. Mainly it is Neurologists and they are so anti-narcotic from my experience. They want to go with all the anti-seizures and anti-d's. I am currently just seeing my GP. He is absolutely great and does everything he can to learn and help me in any way.

If you ever need to talk I am here.

[Kathi49]

Sara,

OMG! I definitely understand about shaving your head. You must have ESP because I was thinking the other night...if I could just shave my whole head, I would slap on Lidoderm patches all over the place. :) Wouldn't that look good? :rolleyes: And this stuff even hurts my eyebrows of all things!

Okay, I should have added that I have had two cervical fusions which doesn't help matters much other than the levels that were bad. I am just saying with all that hardware in there there is bound to be some pain, tightness, etc. Anyway, I had done every conservative thing you can think of BEFORE and AFTER those fusions. These muscles...no matter what they are just want to contract or spasm all the time. So, yep, I do the stretches in a hot shower...something my PM said to do. And then I do them again after a shower. Or, I alternate heat or ice...just anything to get it to lighten up.

And I just have to tell you something about those trigger point injections. Orginally, when this all began, I was getting them in the scalp....around the occipital nerves. Anyway, I could hear the crackling as the needle went in. I asked my PM at the time what in the heck was that? He said, and I don't know true it is, but because everything contracted all the time and for so long, there was scar tissue. Anyway, they helped a wee bit but the pain generator was actually my C3/C4. But you are right. I tried to explain to people what this felt like....and it IS like someone hit you on the back of the head with a baseball bat. Either that or a brick! Then I always heard, "You must have a migraine." Oh, boy, you have got to be kidding me. These were no migraines! But, according to the PM, I had BOTH kinds going on. In the long run my best description was...try having an "ice pick or ice cream type headache going on in the back of your head that NEVER stops!" The electrical jabs and jolts were something else!

Anyway, this was all going on while I was working and before any fusions. I had Phenergan with me but only nibbled on it; otherwise I would have fallen asleep. I just took enough to get the nausea to stop. Later on I saw a gastro for all of that.

And you are right about the anti-convulsants and AD's. The worst part was...having vertigo and dizziness and THEN adding meds that CAUSED dizziness. I couldn't tolerate any of them!

So, I found my current PM who found the pain generator right off and then surgery later. But this crap is back again and that's why he did the Trigger Point injections; trying to be conservative. They did help a bit but he did say to come back and probably the facets will be next considering my MRI and CT scans. I am thinking it is the facets because when he did facet injections and selective nerve root injections at the C3/C4 it was immediate relief!!! I was thanking God because I had REAL relief for the first time in 3 years. But of course that was short lived...maybe 3 months the two times he did them.

Oh, and I just got through with PT. I believe it aggravated alot of this. I did tell the gal not to do an occipital release at all. Well, she did just a little bit. Then it was a whammy for several days. Actually, it is just better if they leave that area alone and just work on other muscles. Massage therapy for the trapezius really helps.

I ought to get that book you are speaking of. Right now I have a booklet for the stretches they gave me after the fusions and they do help a bit. But I have also overdone them before. :eek: I am also going to ask again about Baclofen. And depending on what my PM does next, IF it is the facets which I think it might be, I might consider an RF. It just depends.

Thanks for your understanding. It is diffcult to articulate what this really feels like. For now I am taking .5mg of Klonopin which I can up and also Vicodin. Oh, and I wanted to add...for the SI joint dysfunction, try pelvic floor PT. It has to be someone that specializes in this and they are few and far between. But I did it and it helped a lot! But that's another story. :)

[illusion129]

Kathi - I just wanted to say that those stretches, the ones where you rotate your neck and the one where you gently pull to the right and/or left really do help!

And as far as physical therapy goes, I thought I was just 'crazy'. My doctor told me that it should HELP things, just as though a chiropractor would help things, but I also found physical therapy as well as chiropractic care to both make my back worse. Physical therapy really bothered my neck quite a bit, but with the chiropractor snapping my neck every single day (almost) I actually got 'some' relief from that (I hadn't been able to turn my head in either direction all the way for 3+ years; after manipulation of my cervical spine, I could! That only lasted for a short while).

Hon, all I can say is DO WHAT MAKES YOU FEEL THE BEST. Nobody knows what treatment(s) work for each individual and some of us have nothing that can help, sadly. There are some people out there that opiates/narcotics just don't work to treat their pain, and that's really, really sad considering that is one of the "last resorts". I'm lucky in that I do find opiates to relieve my pain quite effectively, although I do believe I'm going to have to ask my doctor for an increase soon because my pain levels are spiking and B/T meds aren't helping well enough.

Oh well, just wanted to drop by, say hello, tell you how sorry I am you're having so much trouble out of your muscles and spine, and wish you the best of luck! I have "problems" in my mid-cervical spine (C3,4,5,6), as well as a host of problems in my L-spine.

Have a wonderful day! :)

Edit: Forgot to add that I find massage helps quite a bit. It not only loosens me up a bit but it seems to give me a little added energy for a couple of days. Have you ever tried massage? It is expensive but if you go to a chiropractor's office that also offers massage therapy they can usually bill your insurance. I get 60 or 90 minute massages for $50 and $70, but that's at a private lady's office (I think she did a better job so I payed cash); sadly she moved to the Midwest.

[Kathi49]

Thanks Illusion,

The thing is, and I have already been told...NO MANIPULATION OF MY NECK EVER! And that was in reference to Chiro care. And, yep, know all about those stretches since I try to do them as frequently as I can. I think, in all honesty, the PT gal was a little more aggressive than she should have been. She was young and I am not so sure she is the one I should have been working with. There is another place two people have recommended who work strictly with spinal patients and/or patients with nerve damage. I am planning on asking my PM for an "order" because a lot of this is done in the pool which I think would feel great.

And, yes, have done massage therapy quite a bit. I loved it! It really helped a lot. The place I used to go to has closed. But there is a place nearby that only charges $50 for an hour...it is also a Rehab Center. But I want to check out this other one first. My friend told she thinks of me every time she goes...because as she puts it...she sees people coming in there right and left that have had cervical and lumbar fusions as well as hip replacements and things of that nature. She is going for RSD and it is helping her a lot.

I should say my ROM is okay...actually I think it is pretty good. It is the upper, higher level cervical stuff that is causing the bowling ball head. :eek: :D

[Sara1979]

We do have ESP. LOL. I cannot tell you how many times I have said it feels like someone just rammed an ice pick into the back of my head. The SCM refers to your eyebrows and forehead too. I have literally sat with a bag of ice on the top of my head. It doesn't help the pain but at least a different sensation for a little while.

When I was getting Botox the Neurologist would actually have to use a few needles because they were literally bending while he was trying to get the right injection area.

I don't know if this happens to you but every once in a while I will get a spasm that literally will make me scream and then it is gone. Another great crowd pleaser.

.5mg of Klonopin is a really low dose. I was told when I was at that level it wasn't a therepeutic level. So if you can tolerate it I would definitely look into it.

You definitely have to find the perfect person for PT. I make them tell me exactly what there plan is and have literally walked out on some. I learned the hard way once to let an inexperienced person do PT.

Thanks for the SI Suggestion.

[Kathi49]

Sara,

LOL! I know...I sometimes put ice on my forehead and heat on my neck...at the same time. :)

Geez, needles bending? :eek: BUT...I can believe it!

I don't recall having individual spasms because it just felt like my whole head was one giant one. What did make me jump or yell out was the electrical jolts. And it didn't matter if I was moving or sitting or lying completely still; they would just keep coming. Now those would make me cry because it was just another added thing on top of the pain I already had. I can understand it now though because the nerve roots could not be seen at the C3/C4 level. So, it didn't much matter what I tried to do to alleviate it...they were just squished! This is silly but I used to tell people my visual was one of a spaghetti noodle just being smashed with a fork! So, when people would tell me...oh, just try some supplements and eat right...I would have to laugh them off! You have got to be kidding me! Do you think a nerve root cares if I take Omega 3's? LOL Ugh, I don't want to get started on well intentioned advice...but it made me crazy!

As for the Klonopin. Funny you should mention it. My Neurologist just re-wrote the script so that I could up it. And I did...the other night by a quarter. Boy, that helped tremendously! At least I was able to go with my husband yesterday to run some errands. I still had some slight pain so I wore my soft collar. Well, actually I wore it because he drives like a mad man. Just kidding...but he has a Jeep Cherokee and it bounces me around a bit. It's better that I wear the collar when he drives. :D But I did feel a lot better than I have for awhile. I may, with time up it to 1mg which I really didn't want to do. But, hey, if I need to I need to.

And you are right about PT. The VERY FIRST time I did it it was for cervical traction. OMG! Sure, it felt great when in the thing but once done I could have died! The pain came back instantly and in full force! I can understand to a degree why the first NS ordered it but what a mistake! Then I tried accupuncture. Same thing...felt good for maybe a day or so...but forget it too!

As for the SI. Just TRY pelvic floor PT. You may have to get with a Gynecologist or better yet a Urogynecologist. I no longer have that SI pain nor the sciatic type of pain. I keep saying it was amazing to me and it still is. Long story but I did about 4-6 weeks of it and it helped tremendously for me anyway.

[Sara1979]

Yeah, the needles were the worst. I can't help but to laugh when I see women on the Discovery Channel crying because of the botox in their forehead. I am like imagine an EMG Guided Needle deep in a scarred muscle. I bet they don't want to trade. Darnit.

OMG! I just LOVE the advice. My sister tells me this is my punishment for not praying and if I prayed enough it would go away. Used to really tick me off now I am just like okay, thanks. I am ssure that is the problem. I love the oh just get out and do as much as possible. That suggestions stopped after I would literally throw up from the pain and stop responding because I was almost in shock. Thank God, my husband understands. Seriously, though just add a little Omega 3's and you will be healed because you really just want to be in horrific pain.

On an even funnier note. We had a Jeep too and we had to sell it because I couldn't stand be jostled around.

[Kira]

I have so much scar tissue in several of my muscles that it feels hard, like bone, whether it is "relaxed" or contracted. My traps are the most obvious because you can see them (on top of my shoulders), but the part that feels the worst is probably the various muscles that stabilize my left scapula, and my pecs on both sides (which then make the stuff by both scapulae hurt because the pecs are kind of shortened now and pulling my shoulders hunched forwards). I have REALLY tight, hard muscles in most of my neck, but the worst is that stupid left scapula (shoulder blade). My PT can barely get the dang thing to move when he tries to loosen it up. It is just STUCK because of all of this calcified scar tissue.

I haven't had a chest X-ray or shoulder imaging in several years and I wonder what it looks like... if stuff is calcified enough to show up on X-ray or not. That would be seriously bad.

Every time I have a rhabdo attack, my serum calcium drops on the second day and doesn't come back up until the fourth or fifth day. That is supposedly because the dead/damaged muscle tissue sucks up the calcium from my blood and it gets all deposited in there and stuff. I found out during my fifth or sixth rhabdo that they are not supposed to give you more calcium (IV or oral) for the low calcium you get with rhabdo, because that calcium just gets sucked up by the damaged muscle, too. They are only supposed to replace the low calcium if it is symptomatic (causing heart rhythm problems, neurological symptoms, severe spasms called tetany, etc). But for my first four or five rhabdo attacks, the random residents taking care of me in the hospital would order more and more calcium to keep up with it and get my blood levels "normal," only they wouldn't get back to normal. I am sure that all of that calcium they gave me is now sitting in all of this lovely scar tissue I've got. Now they still try to order calcium when it drops on days 2-5, but I refuse it. Then they pitch a little fit, and I tell them to call my metabolic doc if they don't believe me that I'm not supposed to have it.

Now my legs are starting to get tight but it is because of spasticity, not because of rhabdomyolysis. So maybe they won't get so scarred-down as fast. I am trying to decide if I should do Baclofen like my pain doc/PM&R wants me to try. I am worried about getting all foggy in the head from it. The Klonopin doesn't really work for my spasms anymore, that was short-lived and I don't even take it very often. Maybe if I don't take it at all for a while it will work again.

Anyway, I totally understand when you talk about those muscles being so scarred up that they are shortened and don't move and bend the Botox needles.

It seems like once they get stuck down like this then the scar tissue seems to just take over and there is no getting them loose again. I have been doing my stretches two-four times/day for about a year now, and I have gotten very little range of motion out of it and NO change in the hardness or pain.

It is so bad that people literally sit there and try to figure out if it is a bone out of place or part of the muscle... and not lay-people... I'm talking about my pain doc (who is PM&R), my PT, and a friend of mine who is also a PT. One day, my pain doc spent about 5 minutes (seemed like forever) just kind of trying to figure out what in the world was going on with my left side just under the shoulder blade, by the ribs... she kept messing with it and it kind of felt like a massage or something so I just sat there... then she was like "Did you ever break a rib over here and have it heal funny?" and "I'm trying to figure out if you dislocated a rib or something"... but, no, it was just my stupid muscles that have been fried by rhabdo so many times that now they are useless. I mean, that's really bad when people who handle spasmy muscles all day long can't tell that it is my muscle tissue and not some out-of-place bone.

[Kathi49]

Kira,

I just can't imagine. :eek:

But I wanted to ask if maybe Valium might help. Klonopin helps a bit...better than nothing and much better than any standard muscle relaxer I have ever taken. But Valium is the one that really kicks out any spasms. I am just thinking it might be more helpful since you were or are taking Klonopin. But then again, I just don't know....just a thought anyway.

[Sara1979]

Big Hugs Kira. My Doctors have cut the SCM a few times because the scar tissue was getting so bad it was growing down past my clavicle. It does release the SCM for about a year but the scar tissue always grows back. I can't remember if I said in this thread but when I was born my SCM was about half the size it should be. It is so hard when there are multiple things piling on top of each other from one problem. I agree with Kathi Valium helps. I use it for b/t spasms. Again I might have already said but it is 3am and am having one of those wonderful pain nights. I don't know how Ambien knocks people out and I can just take one and have no effect. My Mom takes one and she is asleep in mid-sentence in 10 minutes.

How are you feeling Kathi?

[Kathi49]

Thanks for asking Sara,

Crappy at the moment to answer you. I have to make this short as I need to get ready to go and see my PM. I will say the Trigger Point injections helped to a degree. But I think this is really stemming from the facets and/or any other problem I have going on in my neck. :) I have the pain at the base of my skull and also around the C6/C7. He usually comes in and talks with me before doing anything...and I do have my notes ready. :)

[Kathi49]

I posted my facet injection story under Bobbi's post earlier.

But I forgot to add that my PM said the SCMs were just in a major spasm. He didn't seem overly concerned and they have calmed down. Maybe from the Trigger Point injections I had done earlier? Just don't know. Or maybe since the weather has cooled off it has helped. In any case, they aren't as bad as they were.

[Sara1979]

I really hope you start feeling better. Hugs.

[Kathi49]

Thanks Sara,

I will just have to give it some time and see how it goes. In a strange sense I HOPE it is the facets. At least an RF would be the way to go next....even though it scares me a bit at that level. But if it could stop the occipital issues, I will go for it!

[theminesweeper]

hi kathi,

i sent you a private message a few days ago but i know it was pretty long and probably difficult to respond to the whole thing : ) sorry about that. i've contacted so many people i end up just cutting and pasting the same message for everyone! i really would like to know if you are still dizzy and if not, what type of treatment are you doing? do you still think you have scm syndrome? i wonder now if that's what i have.

whatever info you can share would be very much appreciated. thanks.

bev

[Kathi49]

Hi Bev,

I am the one that needs to apologize. :o I DID see your PM but needed more to time to read through it carefully. I have no excuse other than I have been super busy. I will read through it now and send you a PM. :) But to answer you here and since this was an older thread, what my PM did was to give me trigger point injections first which helped somewhat. But it was the facet injections at C2/C3 that seemed to calm everything way down. I haven't had any issues since. And, no, no dizziness to speak of although it is common from problems with upper cervical levels.