What is your primary "PAIN"?

[survivor08]

My biggest issue is throracic and cervical MUSCLE pain.  I have chronic tension in this group of muscles, basically they are always in a contracted state and TONS of trigger points through out.  I have people tell me how "muscular" my back looks, but this is totally because they stay in this contracted state.  My massage therapist many times cannot even differentiate between my muscles and my bones b/c they are so "hard".

It seems that most CM'ersn suffer from horrible headaches but idr seeing many other types of pain spoken here.

My muscles absolutely cause my headaches and when I can have the "trigger points" massaged, the headache goes away.

[selmaS]

HI...I have to agree yrs ago a masage would deff help my HA's too...and my muscles were hard and tight as well....but as time went on, the massage didn't help ne more and I developed more and more symptoms besides HA's.

"selma"

[laratterman]

The pain that finally put me off work was the intense burning, tingling, nervy pain down my neck/across my shoulder/in my upper back and chest/down my arm/into my hand... and then, of course, these burning, swelling, tension and pressure headaches (that the drs. kept calling migraines and treating as such, with little success).

I mean, there are a lot of symptoms, but those are the ones that finally took me away from work... away from my life.

I hope this helps!

Blessings!

Lori

[*Stormy*]

The only person that can make the right decision for you is you. I know that is a hard thing to have on your shoulders but only you know how you feel day to day. Of course you should take into account your NS recommendations but even if he says to do the surgery, it still has to ultimately be your decision. For me, I had progressed much farther than I would have liked to and when it affects your ability to walk, your life is greatly affected. It made the choice really easy for me. So you have to look at how your life is affected, if you are able to make changes so that you can live with the symptoms and you do need to keep the possibility of progression as a consideration too. Many people choose to wait and monitor their symptoms. Some people just don't get that choice. I have 3 kids to take care of and I didn't make that decision lightly but my NS guaranteed that in my situation that it would keep on progressing w/o surgery. So, get as many facts as you can!! I hope that helps even a little..

[stephanie_C]

Thanks for that carolyn. I have really been struggling w/ the idea of having this surgery. I am VERY good at rationalizing things and all but had myself convinced to put it off. I'm just scared that I'm going to be one of those people that get worse.

[*Stormy*]

Stephanie...would you describe it as joint pain? I get that really bad and it feels like it travels down my leg (or up my arm) and hits on every joint as it goes.

For me, post op that is the worst pain it is just like an inside body ache. I would love to say that it was better since surgery but that isn't the case. However, I want to point out that due to my extreme muscle spasicty, my body was forced to walk, sit etc. incorrectly for a long period of time (over 9 months). I have read that that can cause something like osteoporosis to set in because the bones are continually rubbed the wrong way. I have very loose, unstable joints that pop in and out and make some awful popping noises. When I sit here my shoulder fall inwards and I have to straighten them out to pop them back to where they should be. It is really due to a lot of muscle weakness.
So what I am saying is that it isn't the same for everybody, mine is due to a long line of misdiagnosis that let me get worse and let the damage be done to my body. So if anything I would urge anyone with these problems to get the surgery even faster!! Look at Penguin, she was having some legs issues but had the surgery done quickly and she is doing amazing so far.
Again, I am going to some specialists to try and figure this all out...and I will definitely share what they say with everyone :)
Carolyn

[survivor08]

My primary pain is muscle, which is all in my neck, shoulders and upper back (thank goodness my lower back doesnt hurt); my secondary pain is cervical and thoracic bone/joint pain particularly when it is going to rain.

I have 7mm herniation that has grown from 5mm in 2 years, and my pain has been more chronic during these 2 years, so I have to believe that it is related to the growth in CTH.

[stephanie_C]

Thanks selma, and I'm sorry you're still dealing w/ so much. Have you ever heard other talking about muscle pain? I have pains in my neck, shoulder (left more so than right) and upper back for as long as I can remember, and when I started researching CM I thought maybe it might be from that. But recently I have be experiencing what I think to be "nerve pain". My arms and legs just hurt inside. I don't really know how to describe it but it is DEFINITELY NOT muscle pain. They just ache. Some days are better than others and some days are BAD, like yesterday!!  Is that the typical nerve pain that Chiarians talk about?

So I guess I have two questions. One about the muscle pain and one about the nerve pain. Anybody???

[selmaS]

...ummmm no, BUT, I do have TC and cervical stinosis...which I am sure is playing a part in my pain...plus the TC is pulling down, so I still have a herniation of approx 2mm...the NS said I will continue to have chiari symptoms until the TC is addressed....

[survivor08]

P.S.S. When I said "cervical" I mean my whole neck too I forget "cervical" is specifying that part of the spine and it used to be my upper back what my primary pain but for the past two years my neck has "trumped" my back!

[survivor08]

P.S., I want to know the same thing Stephanie wants to know

[survivor08]

First let me say "YEA!!!!!!!!!!!!!!!" But not "yea" all ya'll hurt too, but YEA!!!!!! Your muscles hurt.......well NOT "yea" your muscles hurt, but YEA!!!!!! that means this chiari thing is what is most likely, for real, what is causing my muscle pain!!!!!!!!!!!!!!!!!!!!

I have been dealing with this pain since before 1987 going from doctor to specialist to alternative I have seen orthopedics (5 to be exact), neurologists (3 of those), pain specialists (3 of those), chiropractors (7 of those), rheumatologist (only 1 of those and he was a total idiot.....), massage therapists (idk how many but more than 10) and all of this time I have been blaming my SPINE!!!  I have Scheurmann's disease, T7, T8, T9 are fractured, nerve ending cysts throughout thoracic spine, every single disc I have left (most have dried up) is bulging from C1 - L5 and 65 degree kyphosis curve.  Every ortho said the curve wasnt bad enough to cause the muscles to be so hard and for once, they were right!!!!!!

I have bought every book about myofascial pain ever written and have researched countless hours on things that can cause chronic muscular contractions and I FINALLY HAVE AN ANSWER!!!!!!!!  OMGosh I feel like the weight of the world is off my shoulders!!!!!!

I know every one of you can relate to this which is why I know you will understand my elation of hearing others have the same issues.  I was so afraid that mine was Scheurmanns AND Chiari and that Chiari was the only one with teatment options!  

PRIASE GOD as I have been really praying for answers and healing and He has shown me the answer so I know healing is coming, I just KNOW it!  

May God bless each and every one of you and know this I will be praying for every single one of us to be relieved of our pain.  I will have to use your screen names, but that is cool as God knows who you are ;)

[stephanie_C]

so did any of you (who are post-op) have relief of this "muscle" pain? I am still in the process of considering surgery, but one of my questions is will it relieve the muscle pain I have too?

[*Stormy*]

My biggest issue has always been muscular and joint pain. Before surgery I had a very big problem with spastic muscles all down my legs, I had to fight against myself to walk. Now, body pain is still my worst problem. I can totally relate to the cervical, thoracic and lumbar pain, it is there everyday with no relief. My muscles too are always bunched up in knots around my neck and back and they take turns in all the other places too. I get huge painful lumps in all limbs when the muscle acts up. I am in the process of trying to determine if the joint pain I have along with this is a result of dealing with improper functioning and weak muscles. I feel I need to get to the bottom of this if I am ever going to find some relief. I have an appt. with a rheumatologist on the 20th...so we'll see.

PS ( I understand the body builder thing..before surgery I had massive legs due to the spasicity...now they look so puny ..)

[rod44]

My pain is between my shoulders radiating up into the back of my head. Movement in my shoulders & neck is very limited.

Ray  

[ChiariWolf]

I also have many issues in that area. Nothing really seems to help except not using the shoulder. This went away for some time post-op and frankly still isn't back with the same severity. But still.... Anyway, I tried massage with electro-acupunture before we knew this was Chiari but it gave me stroke like symptoms all up my right upper torso. What exactly does your therapist do? The guy I seen had me get an ok from my doctor to come back and try cranial-sacrial [sp?] massage. Somehow it is supposed to move your CSF and release or reduce any blockages. Kind of leary of it though at this point no one is touching my neck with or without doctors permission.

Wolf

[zygy]

Jaw and Neck Pain!!!  But the most annoying are the occipital headaches (pains) which then lead to more headaches.  The one thing I want to go away are the head pains!

[shanmomof3]

well the majority of my pain is in my neck! But i also have cervical stenosis. I get the muscle knots too but mainly between my shoulders and my right shoulder. But even its massaged the headache doesnt go completely away, just lessens so i can tolerate it. Blessings ~ Shannon