I am not mad! Diagnosed with CS

Hi there, I can relate to your experience - I am 53 have typed for many years, and was diagnosed with CS in August too. I was experiencing pins and needles and shoulder/neck discomfort. (At the same time I discovered I needed a hysterectomy but that is another story!)

Three months on, and I am experiencing the head/neck pain. I have been taking Diclofenac or Cocodomol when the pain starts up - but had been given ear reflexology a while ago by my physio. Yesterday when having a bad attack, I found this worked (I nipped the area I had been shown on my ear, and the pain virtually disappeared). I was having sciatic pain and it helped that too. It is worth a try as I too do not like to take medication if I can possibly help it.

I have also been told a wheat pillow is good (heat up in microwave) as is Ibuleve gel for specific flare-ups.

Hope this helps in some small way! Kath xxx

Hi there,

I have/am suffering with CS. I have had a multi-level Cervical Laminectomy to ease the compression on my spinal cord, which has helped slightly with the numbness etc, however, I still suffer with CS. Which is not curable by any op.

I find that Amitriptyline helps enormously as it eases the nerve pain involved in CS. I also take Diclofenac 50mg 3 times daily, plus Ranitidine to protect your tummy, if you take any anti inflammotary drugs, I also take Glucosamine, which my GP tells me helps with Arthritis.

I have also attended a pain clinic where I recieved injections on my lower back, and boy did that help enormously.

Hope this helps.

Take Care

Emxx

Please don`t be afraid to discuss your conditon with your GP, (because you think you may are wasting his time,) you are in pain and need the correct medication to help you

Hi Em,

How long have you been suffering? You seem to have covered all eventualities in your post - can you take Amitriptyline while driving? My GP mentioned Cocodomol and Diclofenac as I had some left over from my hyst op - but I will mention it to her when I see her next week.

Am glad your surgery has helped you to some extent. It must be very painful in your back (I have mild scoliosis but not much pain, mainly discomfort). My consultant doesnt think he can improve things with an op, told me to come back when I had pins n needles \"all the time\"!

Am pleased to say today I dont feel much pain - although I am off sick and havent typed much in the last three months.

Best wishes, Kath xxx

Hiya Kath,

I suppose I have been lucky really, in that I was diagnosed pretty quickly, I have suffered for 2 years from start, to having my op 12 months ago.

I will say that meds do work, however, what works for one person will not work for another, Dicloflenec works for me, it keeps the pain at a tolerable level. But I can honestly say since taking Amitrlityne things have really improved.

I,m not sure if you can take Ami whilst driving, it would be better to ask your GP as I do not drive. It can make you a bit spaced for a while, but that goes as your system gets used to it, usually it is taken at night, I take 50mg per night.

Hope this helps

Emxx

Hi

I can relate to all the experiences that you are talking about. I too have pain, stiffness, have pins and needles, numbness and I drop things involuntarily.

I was diagnosed at 36. I am now 43. I have seen various consultants - (quite a lot of consultants). Finally I went on a pain management programme. You tend to go on this programme after you have exhausted all medical solutions. Here I learnt some important things.

For some people, surgery may work. It is not for everybody. It depends where the damage is. Surgery is not an option for me, it would kill me.

Painkillers have their place - they can relieve pain, if taken at the right time, and at the right dosage. You should not depend on them only however. They provide a short term solution. What happens when you get to the strongest painkillers there are - opiates and they no longer work?

You have to learn to manage your condition - people will give you well meaning advice. However, what works for one person, does not work for another. You need to find what works for YOU.

Of course managing this condition is not as easy as it sounds. It is a struggle every day, and it is not easy to do. It means facing up to your limitations and finding a way round it. Planning your day so that you do not end up sore, and incapable, or overwhelmed by what you have to do. It means accepting that you cannot do everything, and the only do the most important stuff. The rest will have to wait.

It can also mean dealing with the depression and loss that this condition can cause. CS can mean loss - loss of function, loss of ability to do things, and the affect that it can have on your life. However, it does affect everyone differently, what has happened to me, may not happen to you. Your experience could be very different.

The pain management programme taught me that I can get my life back to some degree, but it will take a lot of effort, and patience, (the one thing I am not very good at). Somethings have gone for good - time to work, and concentrate on the things that I can still have?

I wish you well for the future.

Regards.

Juniper

Hello to everybody who have been diagnosed with CS

I was diagnosed 5 years ago - I'm now classed as a severe case.

My symptoms are pain at the back of my head,pain down my neck, pain in my shoulders,pain in my arms,pain in my middle back - which becomes severe 10/10 pain the more mobile I am - I also have a myclonic condition [muscle spasms] these spasms become worse when i'm in bed.

I find it very hard to sleep due to the pressure that is put on my neck and shoulders. I've found that the only pain killer that will work on me to be TRAMADOL but if i'm mobile the effect will soon wear off and the constant pain will return very quickly

I can only take three per day and two of these have to be take at night - otherwise I would never get any sleep. God help me!!!! Alan D :roll:

hello, i am sorry to hear you are suffering so much with the pain at night, firstly some doctors prescribe amytryptiline, for pain releif and when taken at night is most effective to aid sleep. if that doesnt help i have been on zopiclone for sleeping it has been most effective, when you take these you at least get a good nights sleep, and it makes getting through the next day easier. the dosage is a 7.5mg a day. has any one had a scenario where a gp has refused to refer you to a specialist, i have just been to see mine and i came away flabbergasted. so i am off to seek a second opinion. After settling down with my pain and coping, it has flared up, so turned up to my gp and expected help what a silly thing to do.

Hiya Alan,

Sorry to hear you have CS, have you had MRI's ? I think it is vitally important that these scans are carried out to make sure there are no further underlying causes such as osteophytes (boney spur growths on the spine) .

Chris,

I fail to understand why your gp has refused to let you see a specialist, he has a duty of care towards you. Your other option would be to pay privately to see a specialist cost about £150, I can recommend a doc at

Rochdale infirmary if you IM me I'll let you have his name, brilliant consultant.

I have found Ami to work very well for me, having had the surgery 15 months ago, I feel it is now comming itno it's own, thank god, of course it won't be for everyone, my brother being a prime example, he has been left with a very clumsy left hand, lots of pain and discomfort. I really feel for him. I think I was lucky in as much as I hadn't suffered very lomg with it ,2 years approx this probably helped with the success of the op, I think :roll:

Take Care, be gentle with yourselves

Emxx

After nearly 18 months of suffering neck pain, I was diagnosed just before Christmas with CS. My pain management consultant advised some trigger point injections - I had done the traction, osteopath, pain relief and steroids all to no avail. The injections were very painful and when the bruising had subsided, the pain in the left side of my neck was still there.

Three weeks later that pain has now gone, however I have much more pain in the spinal area of my neck and along my shoulders, and when it gets bad down my arms.

I have had an MRI scan (my consultant was not particularly happy for me to have one as he said that the CS may not show up). The scan has come back clear - I have very mild degeneration of the disks appropriate for my age (43). He has advised more injections (in a months time).

Does anyone have any tips to try to get some ease. I am not in agony, just very uncomfortable - I am not sure how severe my pain is compared to someone else. I have a high pain threshold after suffering for years with my back and having had two back operations - which the consultant says has brought the CS on quicker.

I am going to see a physio for some exercises and advice - I keep active and mobile, but get very tired.

Any help would be great. Thanks.

I had trigger point injections on the right side of my neck last July and your experience sounds similar to my own. Put simply, the injections seemed to change the character of my symptoms. It's as if the pain (or burning, as I prefer to call it) finds it difficult to manifest itself in that part of my neck and is instead producing an increased reaction in my right arm and down my spine coupled with tingling in the head and dizziness. Physio was found to aggravate my condition and I believe the best way to manage the pain yourself is to find the right balance between activity and relaxation. I am due to go to hospital tomorrow for a cervical epidural which was cancelled last week due to the bad weather. My advice would be to stop whatever you're doing when you feel the pain worsening. I know that's difficult, sometimes impossible, to do but, over time, you'll get used to the limitations that CS imposes on you.

If I can help you further, please don't hesitate to post another message here or, if you prefer, send me a private message.

As many have said, this web site is a great source of information and record of experiences by others, proving that we are not alone in this!

My CS started in December 2001 while at work. Over a period of 2 to 3 hours pain increased down my left arm until it became so intense I seriously thought I was having a heart attack at 41 years of age. Having phoned NHS Direct I was told to see my GP that day, which I did and was assured it was not a heart attack. I have read others accounts of wrong diagnosis or no diagnosis for their condition, but my GP set up x-rays of my neck within a week and within 2 weeks had been told I had CS. By this time the pain had significantly subsided, but ever since then I have had pain in my left arm, numb fingers and toes and pins and needles.

My condition was fairly stable until May 2008 when I had the inevitable massive flare up. There was severe pain in my neck and down my left arm, which lead me to taking Solpadol as a pain killer and Tramadol when things get really bad. Diclofenac also helps, but I only take this if I really have to. Due to this deterioration in my condition I was referred to a Consultant who arranged an MRI scan confirming the CS diagnosis at C5/C6 and that I have a trapped nerve in my neck. He also said that there was some obstruction to one of my blood vessels in my neck and if I twist my head too quickly I sometimes feel dizzy/faint. A constant dull ache across the shoulders and frequent shooting pains down the left side of my back also doesn’t help matters. As good as the Consultant was, he basically said I have to live with it and manage my condition on a daily basis.

I consider myself lucky as I don’t get the headaches that many of you mention and I rarely have problems sleeping, but sitting down for too long (20 mins or more) is a pain. I need to be on the move or lying down to reduce my pain as much as possible. I bought a memory foam mattress and neck shaped memory foam pillow, which are both a tremendous help. I have also bought an automatic car to save on the gear changing with my left arm; this has helped.

As I am sitting at a computer for most of my time at work they have been very good in supplying me with a memory foam chair with a head rest, foot rest and a telephone headset, at their expense. However, this has not stopped from having 32 days off sick since May 2008 due to CS.

Twice I had steroid injections to the trigger points on my back, but this didn’t really seem to make much difference. I do have regular massages, which certainly relieve the pain and I am considering acupuncture, which some say has helped them.

Other than that it is live with it! Good luck everyone - :shock: