Link between fibromyalgia and Positional cervical cord compression (PC3)

[Jjudith]

Some of us from the Fibromyalgia Associaion UK went to a lecture by Dr. Holman from USA who talked about the link between having deformity of the spinal canal pressing on the cord and fibromyalgia - 71% of fibromites in Seattle had this problem, compared to 0% of people with other connective tissue disorders. Well, I had great difficulty in getting an MRI scan of my neck in UK - the NHS hospital took an xray and then told me i had nothing wrong with my neck. A private neurologist told me that I was 'doing it to myself'. But I came to Dubai where you can just walk into an MRI test centre and providing you pay you can get the xrays done. These tests revealed I have serious issues of positional cervical cord compression and I am initially going to have neck manipulation. But the important issue here is that we are denied a test that could change our lives because treatment is possible if you have PC3. This means that at least some of us could start feeling a lot better if we had the right treatment, we would take less drugs and need less support which would mean a saving for the government, and we would be able to return to something nearer a 'normal life'. If you want more details look at positionalcordcompression.com and then pressurise your local doctors - this research gives us real hope.

[Jjudith]

positionalcordcompression.com is the website, or google Andrew Holman PC3

[ladymoth]

Several of us in the South have met Dr Holman, too - what a wonderful man! His arguments were very convincing, and I'm sure that his findings are a key to many peoples' problems.

To be quite frank , he met with a less than enthusiastic response from hospital managers and doctors here, which I am sure was mostly because they were afraid of being met with demands for scanning - which costs money.

I am afraid that most managers in the NHS practice 'spreadsheet medicine'. They are not far-sighted enough to realise that treatment/investigations which might appear expensive in the short term are a big saving in the long term.

Of course, with the NHS being compartmentalised into so many fund-holding trusts, they are aware that the long term saving might not be of the money that they expended in the first place - it will probably be saved in after-care and DLA, which tho' saving the national purse, will still leave that particular NHS trust in deficit!

I think that until business style money-management and politics is removed from our health system, little progress will be made.

At the risk of making political style comments, which I know are not welcome here, I feel that the NHS is a unique organisation requiring specialist administration in which business gurus have no place.

There! Rant over!

Here's to a progressive system whereby our health system is run by doctors qualified in management rather than managers qualified in ... 'management'!

Love, Moffy xxx

[Jjudith in reply to ladymoth]

I agree Moffy, and also the pharmaceutical companies play a big part too - they are investing millions into 'wonder drugs' for fibromyalgia currently, but if the answer is something that doesn't involve expensive medicines then it is much more difficult to publicise, and they and the medical profession will be very wary. When I come back to UK in Febrary I would willingly send a copy of my MRI reports to your hospital, and any other hospital in UK. And I'll certainly be in touch with my MP. I think I am the first person in the Mendip group to have an MRI and I have problems, so many of the others in the group might too, but they can't afford to come to a place where they can order the tests themselves. The other thing of course is that doctors don't like patients to have more info than they have, I have met that barrier and I can feel the hackles rise when I know more than specialists about my condition, and they react by trying to put me down.

[ladymoth in reply to Jjudith]

You're absolutely right, Judith - doctors hate the 'expert patient'!

I think contacting your MP, and maybe the Health Secretary would be a good way forward, once you return to the UK.

A significant number of Fibro sufferers have issues with neck pain, and/or a history of neck injury. I suffered a whiplash injury at age 22 which has given me pain ever since (42 years!).

In all that time I have never been offered a scan or Xray, tho'I did have an A&E Xray after the initial injury to exclude any fractures.

My physio agrees that I have significant problems in the cervical spine, but still no offers of investigations!

One does begin to wonder what is going on, in that few efforts are made to get to the bottom of this distressing and expensive syndrome.

As you remarked - someone, somewhere is probably making a few bucks out of the massive sale of pharmaceuticals!

Moffy x

[Akasha72]

that's really interesting... my neck is my worse problem so I can see why it could be the cause of everything else

[jom277]

My neck is my worst problem too and it has all stemmed from there. I had an mri 5 years ago and it showed bulging discs and some curvature. I also had a herniated disc at T8 and T9 but at that time I had no back issues so it was left.

I recently saw a rheumy, told him the history and although he thinks it wont show anything up has ordered MRI for my neck and spine. Hopefully with your information it may show up. My neck and back are a hell of a lot worse now than what they were.

Thanks

Jo

[Jjudith in reply to jom277]

What you need is a bendy MRI scan, one where your neck is fully extended back. Then it shows any narrowing of the cervical spine on movement. This is called positional cervical cord compression and the effect of movement is to stroke the cord, and animal studies show this results in a disfunctioning autonomic nervous system, and fibromyalgia is a disease of the autonomic nervous system. Do google Andrew Holman Seattle PC3. I keep trying to put the website but it won't do it, so I'll try here splitting it into two bits, join it up positional cord compression.com No gaps between the words for the real website.

[Hidden]

My neck has always been a problem and after a minor car accident it got much worse and then a year later my pain flared out of control. I couldn't get an mri either until I had the accident, The mri showed disc degeneration but no compression of the cord, That was a year ago and since then my neck has got worse and I get pain everywhere. My GP said the fibromyalgia may have been triggered by the accident or at least made worse by it.

[Jjudith]

Yes fibromyalgia often starts after whiplash injuries. Look at the website and then harrass your doctor - and good luck because I couldn't get it done in UK.

[Hidden]

I'm hoping when I get the appt for the rheumotologist he/she may suggest another mri but I will probably wait another year for an appointment. GP faxed off the letter for me but said it will be about 6 weeks before I hear from them at all and then possibly a further 9 months before I get a date to see someone!

I did have symptoms of fibro for years before the accident just never knew what it was. I always had lower back trouble going years back and then got upper back trouble and neck pain and stiffness and that's where it all started to go wrong for me. So I do think the neck being a reason for fibro could be a possibility.