Hi everyone, I'm new to this site and having been reading your post. It's so amazing how my life has revolved. Since the 1980's I had been diagnosed with Fibromyalgia or Chronic Fatigue syndrome or various pain syndromes. In 1992 I was diagnosed with bilateral Thoracic outlet syndrome. I had a first rib removed on the worst side with was the left. I didn't have an extra rib. Anyway, the removal of the rib helped some on the blood flow but I continued to get worse on the muscle spasms and the high variaty of symptoms many of you post here. The only way I could slow the progression of the problem was to stop working. As years have gone by I have pushed to find out what was really causing my problems. As I know, many doctors use Fibromyalgia as a waste basket term when they really don't know what's wrong with you. Finally my symptoms progressed to the point of having really bad balance problems and falling, along with drop falls and many other often brain related symptoms. My headaches I dicovered was originating from the back of my head as well. In august of this year I had an MRI of my brain and cervical spine. Finally the answer came. I have a Chiari 1 Malformation. This is where a portion of you brain drops down in your spinal canal. The radiologist missed it in 2005 on other MRI's and this is VERY common to happen. Even the best Dr's, Radiologist, neurologist, neurosurgeons, etc. know nothing or very little on this condition. To make a long explaination short. It can cause so many symptoms a doctor will think you are crazy. The more I have researched this problem, it has come to me that since Chiari makes neck muscle and shoulder muscles spasm due to nerve pressure in the brain, the chiari condition was very likely the cause of my TOS. Some of you may already know that many people with fibromyalgia are often diagnosed with TOS. The real clincher here is in recent years many people with fibromyalgia/chronic fatigue, etc, are being diagnosed with Chiari 1 malformations. Now, the Erlos Danlos comes into play for possibly those of you that have hypermobility of your joints. Erlos Danlos can cause Chiari 1 Malformations and I am reading that it also can be a cause for TOS. A tethered spinal cord which is found at the bottom of the spine can also cause Chiari 1 Malformations. (This also sometimes being a cause for spinal deformaties and/or increased lower body problems). Chiari can also be caused by literally having too small of a skull for your brain. There are many reasons this condition can happen. If any of this sounds interesting to you and you would like to follow it up more, do searches on the internet for Chiari 1 Malformation. The symptoms are never all the same in every person. Thus making it harder for Dr's to diagnose. Even if it's seen on an MRI, radiologist or Dr's often dismiss it as an incidental finding. In recent years Chiari specialist have discovered much more about this condition. They and many others are trying to educate others in the medical profession, but it will take time. If you find through more research you symptoms are very simular to Chiari and you have had an MRI of your cervical spine and/or head, you may consider having it looked at by a neuroradiologist that is educated on Chiari. Be aware that many doctors will even dismiss Chiari as a problem. This is because they are from the old school and not up to date on it. I hope this post might help many of you that suffer. There are surgeries that can help this problem and sometimes make all the symptoms go away. If I had known in 1992 that I had Chiari, I would have never had my left first rib removed. There are support groups on the internet for this condition as well and many people there that can be of help with those of you with questions. I am having a decompression brain surgery done soon by a Pediactric Neurosurgeon that is not with one of the specialty clinics but is with a University hospital. He is well educated on this condition. For those of you that's heard "It's all in your head" It may very well be. :>) Dee

Dee, have you had your surgery yet? How goes it? I hope your recovery is going well. Please post if you are. I have a few Qs for you.

Hi Dee,
I have a question about the headaches you mentioned.
I have fibro/ and a spinal cord injury...(cervical stenosis-in which a vertebrae was cutting into spinal cord)
I had the surgery to 'fix" that but the neuro problems were getting worse.

Now about the headaches---

I have lots of them. Alot of the time they feel like they are in the base of my skull/ extreme pressure/ advil does not help, something in there feels swollen and too big for the area, thus causing the pain. It is hard to describe.
Other times the pain is a raking pain in a mohawk pattern.
Other times it is just icepicks into my temples one or both.
Geri

Hello, I never register to forums, but this was just too eerie that I had to. I'm responding to Timandee's post. I'm also new to this site. As Dee was, I was at first diagnosed with Fibromyalgia or Chronic Fatigue syndrome or various pain syndromes for musculo-skeletal pain throughout my body. Then, I had a specific injury of C5 vertebra triggered by a Chiropractor. Dr's diagnosed me with bilateral Thoracic outlet syndrome as a trigger/cause. They told me I was to get a first rib removed to subside the pain. It was excruciating for weeks / months. I opted NOT to have surgury, which i felt was extreme. The dr's then said I have ehrlers danlos syndrome, or marfan's but a lighter version of it. I have 85% of the symptoms. I had a type of surgery in my neck (prolotherapy) for the C5 injury to make it better, which did help, and an MRI discovered an irregularity on my C-spine, which causes less flow and nerve signals to other parts of my body.
About a year later, on almost a whim, for totally other reasons, I went to a 10-day meditation course, because I was interested in Eastern philosophy. It was free, non-religious in any way, and almost scientific in its approach. I had an extreme powerful experience on the 6th day. ALL my pain completely stopped - total physical ease, for a year. Both my body and mind were affected drastically, but the most noticeable was my body. No more pain syndrome symptoms in any way. This may sound weird that a simple meditation (watching your breath) could change so much, but I realised the deep connection between mind and body. Anyway, slowly the pain came back when life was getting more difficult. I'm not saying it's "all in your head", but due to this experience I realize that what we think is physical (tangible) may have other connected relationships with the mind. There are deeply related, if not the same. I'm not 'cured', and the pain comes and goes in its intensity. But meditation helps. And in my case, drastically.

How wonderful that relief must have been. You say it came back when life became more difficult, so I'm wondering if the pain is caused by stress, in particular tight, tense and sore muscles.
Stress is stored in the muscles as muscle tension, if you can't let it go. I suspect that meditation has a calming effect and the tension dissipates.
Coincidentally, my new pain doc thinks that my head, neck and shoulder pains are probably caused by my very tight and painful neck muscles.
He did a physical exam of my neck and found just the muscles that cause pain-boy, did he find them!
Some of these muscles run from the neck to the shoulder, and i have a lot of that sort of pain.
I tend to carry my stress in my body with tense muscles-always have done. Physios would send me away saying that I was too tense to work on.
So I am now going to do a program of specialised clinical exercises, which I'll be able to continue at home.
It struck me that your pain may well be either caused or aggravated by muscle tension and stress.
Have you tried muscle relaxants at night?

I also Have recently benn diagnosed with Bi Lateral Thoracic Outlet Syndrome.
Not to mention I had Artficial Disc Replacement surgery @ L4-5 in my low back about 4.5 months ago.
I have found that stress & anxiety can deffinately have an adverse effect on both of these pain generating conditions, especially the TOS.
Stress usually manifests itself inthe shoulders, Trapezius and chest muscles
all of which then translate to tightness in the sterno clietomastoid and scalene muscles of the neck. It is thes muscles of the neck in which TOS generally resides. not to mention tightness of the mandible joints.
Unfortunately it seems to be a viscious circle where chronic pain causes anxiety and stress which serves to magnify or further irritate the chronic pain!
hing Its hard to win in a situaution like this. Therefore anything that can help
your mental well being will have some positive effect on your pain!!!
I think meditation or prayer are great tools as well as breathing excersizes
that teach you to breath diiferently so as to reduce the involvelment of the upper chest and neck muscles when you breath.
In my case i also found it helpfull to start taking antidressant/anxiety meds,
whereas that may not be for everyone it has made a difference in my pain levels.
hang in there.

Thanks for posting this. I have suffered, but functioning, for the past 30 years. Let us know how your surgery goes. I am interested in Erlos Danlos, not convinced I have it, but becasue of all the issues of connective tissue problems. I have been helped pretty well by Neuronitn for the fibro, but having a bad flareup for a little while now. Good luck. At least now, docs don't poopoo you for having fibro dx.