Details of problems and solutions wanted

Bones, joints and muscles
1

I am writing an article on CS and wondered if readers would like to share their experiences. The article is aimed at healthcare assistants. I am looking for a few sentences on either:

- symptoms

- problem areas

- how healthcare staff have (or should have helped you)

I can preserve anonymity if wanted or just put your name and (comments extracted via EMIS with permission of writer).

I am particularly interested in younger onset CS. The deadline for contributions is Friday for contributions.

Thanks

Julie Independent Occupational Therapist.

2

Hi,

I was first diagnosed with c/s aged 31 in 1981 but probably had it from a car crash when I was 9years old. Heres my experiences:

Symptoms: Occassional sore stiff neck and shoulders. Rear of head sore, quite often resolving into muggy disorientating headache (back and top of head). Aches in shoulder blades, arms and occassionally feeling generally fatigued and sore.

Problem Areas: Neck, back of head, shoulders mostly.

Help: I've had physiotherapy, traction, osteo, chiro etc and found them fairly useless, sometimes aggravating the problem. Most doctors etc. are unfamiliar with cocktail of symptoms and usually advise taking whatever painkillers seem to work. Over the years I have concluded that self management through trial and error has yielded more positive results...i.e. avoid any activities that might aggravate neck and varying sleeping arrangements can also help.

You can have my personal details if you contact me privately (email) and good luck with your article.. I would like to see it when finished.

3

hello i too was 31 when it all first started , initially i awoke to find i couldnt move anything above my waist. i couldnt move my head. my symptoms are pain in my neck mainly the left side,a deep ache in my left side of my neck,both shoulders are frozen. i still cant move my head much,have very little flexion, neither can i tilt my head back,i also suffer from pains in my ribs, and lower back pain. i cant lift, bend, look up or look around. i havehad physio, traction,deep heat treatment,injections,acupuncture,and many many drugs. as to the health professionals i wish they had taken the time to find out what is happening to us and be honest instead of trying to pass us off onto other departments. it took me quite a few years to get a diagnosisand when i did it didnt help because not every one understands or believes. ps i also suffer from horrendous headaches which takes ages to go away and no medication helps.i have found out that my only course of action is to be aware of what sets it off and avoid it, dont bend, dont lift,dont carry heavy weights, rest as and when and dont stand or sit for too long. i spend a lot of my time lying down to relieve the pain. i hope this has been of some help to you and good luck.

4

Hiya Julie,

I think what would be important to me for health professional to do when presented with a cs sufferer, would be to request an immediate MRI scan to determine the level of distress to the spine, had this not happened to me by a very shrewd physio, I would not have known that my spinal cord was narrowed and pinching the nerves, I have since has a spinal laminectomy, and would like to think through the swift action of the physio, further damage was avoided.

Take Care

Emxx :wink:

5

It’s very difficult to convey the effects of CS in just a few words. I endorse most of what has been said by the previous contributors to this thread, especially Gerrytheneck’s comment about self management through trial and error bringing more positive results than any treatment or advice given by the medical profession. Like Gerry, I would like to see your finished article.

In my case, I first reported the symptoms to my current GP when I was 37 in 1994/5 but he didn’t diagnose CS until July last year. However, I know that I experienced back and neck problems much earlier, certainly at the age of 13 if not before. My own feeling is that my current problems stem from a bout of meningitis when I was 5, the treatment for which was a lumbar puncture. A meningitis charity helpline has told me this is a very risky procedure for young children.

My symptoms are chiefly burning sensations in the neck, upper right arm, lumbar region of back and, to an extent, right hand at base of thumb and forefinger. Put simply, the more I do, the worse the burning becomes, even over a period of days. As the burning increases, a tingling sensation develops in my head which can transform into a muggy, occasionally disorientating headache. Sitting relatively still or relaxing in a bath can ease the symptoms, usually temporarily, but they never disappear entirely. Sitting down (or pursuing any activity) for too long can have a detrimental effect. I also wake up with these burning sensations and rarely have a completely uninterrupted night’s sleep.

My GP referred me for a course of physiotherapy in Spring 1998 but, after a few weeks, the physio concluded that she was doing me more harm than good. Indeed, I had a very distinct reaction when she pressed my lower spine and, for several weeks after that, was in a great deal of pain and discomfort. A consultant rheumatologist referred me for a further course of physio later that year despite my protests. To be honest, he seemed to have a very closed mind about the subject. The second physio reached a similar conclusion to the first.

Basically, nothing was found until last January when an MRI scan revealed severe degeneration on the right hand side of my neck. However, it was not my GP who referred me for this scan but a clinical physiotherapist to whom I was referred. Last July, I was given a series of trigger spot injections in my neck which seem to have made the condition worse and brought on some new symptoms. Since then, I have kept a daily record of my condition. If you (or any of the other members of this forum) would like to read it, just let me know. I am now being told that I should have a cervical epidural which carries a degree of risk.

Hope this been of some help to you.