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Don't know what else to try for CS pain

Posted , 7 users are following.

rachel23959
rachel23959

Hi I am new to this forum. I am 36 years old and I started to suffer a stiff neck, headache and shoulder/neck pain 10 years ago. For a long time it was put downt to stress, too long working at a desk etc but eventually after many trips to the doctors I finally got an x-ray a couple of years ago which confirmed that I have CS. I have recently started to get pain in the middle and lower parts of my back as well which has not been investigated but my doctor says is probably the same thing. The pain comes and go's but has been a lot worse lately. I have had phyiso (manipulation) which did help my lower back a bit but not my neck and shoulders. I had acupuncture on my shoulders which offered some temporary relief but the pain came back after a few days. I have now had a pain killing injection in my neck but it hasn't totally killed the pain in my neck. The worse pain is in my shoulder but apparently if I have a pain killing injection in my shoulder I need to have this done in hospital so they can use an xray machine to make sure they don't inject into lung etc but there is a very long waiting list.and in the meantime I am taking Co-Codamol at night to stop the pain enough to sleep a bit but it is not always effective. I am also on anti depressents as the pain gets me down. I have found that Diazepan helped better at night but the doctor won't give me any more as it is addictive. I have also found that alcohol helps (guess it helps me relax lol) but I have given up drinking altogether now because If I have a drink I then can't take the prescription painkillers at night. I work full time in a busy office and have a 9 year old son and I am increasingly struggling to keep going. the neck pain causes constant tension headaches, light headedness and fatigue which can be crippling at times and I have also started to get a tingling sensation down my left arm. I have tried Yoga and Pilates at home as I can't afford classes but that only seems to make the problem worse as does swimming. I have lost half a stone in weight (not that I was overweight to start with) as I hoped that might help the lower back pain but havn't noticed any difference. Just wondered if anyone could suggest anything else as I feel like the doctor doesn' t want to know (he just tells me that there isn't much else they can do and I have to learn to live with it). Any adivice/suggestsions would be greatly appreciated. Many Thanks

0 likes, 17 replies

17 Replies

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  • Syd1479
    Syd1479 rachel23959

    Posted

    Hi Rachel, I'm 36 too and also have CS and spinal stenosis. I was diagnosed last April after my GP sent me for a MRI scan. You say you have had a x ray but I would push your GP to send you for a MRI scan as this will pinpoint exactly where the damaged area is in your body. My neck where the damage is/was at C5/6 and C4/5. I tried acupuncture, aggressive physio, yoga and pilates but felt the same as you. I have also had steroid and nerve block injections at the hospital that didn't help so was referred for surgery. I had a ACDF operation on C5 / 6 (the worst damaged area) and a cage fitted 6 weeks ago. I may need to have another operation on the other area and was told they will monitor me with the stenosis too. Its too early to say if I've benefitted from the operation as I'm still in the recovery period and experiencing pain but I had to give it a try as it is and was the only option left. I take co codamol and started diaxepan this week as work are causing me alot off stress due to my current sick absence and Amitrypilin which is also a anti depressant and really helps at night. I know exactly how you feel but please don't let your doctor's flippant opinion stop you from getting more help. Please push for a MRI scan if you haven't had one and if you have push for your GP to refer you to a specialist at the hospital. Hope this helps x
    • rachel23959
      rachel23959 Syd1479

      Posted

      Hi Syd, thank you so much for your advice. I have certainly noticed that a lot of other sufferers like yourself have had MRI scans so now I know that it is not an unreasonable request I will go back and see a different doctor and ask to be reffered for one.  Sorry to hear that you have had to go through surgery, fingers crossed it will of bee worth it and things will start to improve for you x
    • Syd1479
      Syd1479 rachel23959

      Posted

      Unfortunately it's more about costs than getting the right help for people alot of the time although there are some doctor's like mine who do focus on the patient. Good luck with your new doctor and please do not give up trying to get that help as it is there for you. Thanks Rachel x
  • donna03
    donna03 rachel23959

    Posted

    Rachel,

    Cronic pain is not fun and it will make you try about anything to releive the pain.

    I am not pretending to be a doctor or anything of the such but I would highly suggest you see a specialist like a neurosurgeon or neurologist because with numbness, that tells me there is something going on in the neck with the soft tissues that an x-ray will not pick up. That needs to be an MRI. I know this because I was having similar symptoms.

    I do not want to alarm you, lots of people function a long time with cervical problems but when you start getting numbness, tingeling and dizziness, not to even mention pain,  that is tough to ignore. If your General Practictioner is not taking this seriously and telling you that it is something you have to live with and not suggesting you make certian its not a buldging disk or God forbid like mine and it be a ruptured disc which can cause paralsysis, then that seems not doing all he/she can do to help you with the issue. It sounds like symptom treating to me.

    I hope you get to the root of your problem. By the way shoulder pain cronic can be cervical neck as well as numbness in hands and feet! Also Breast Cancer can cause cronic shoulder pain. I found that out with my best friend this past year. She and I have always been very athletic and she was complaining she hurt her shoulder and her neck was stiff all the time. Finally when she did get to the doctor and insist he do something, they found she was in stage 4 Breast Cancer.

    Cronic pain is not something you have to live with...that is all I am saying. Pain is your bodys natural indicator that something is not right. It is trying to tell you something.

    By the way, I do yoga religiously and had to STOP the Pilates because with the Pilates you are on the neck and shoulder...big no no for cervical neck problems. Pilates is not for everyone but yoga in some form or flavor, it can be safe and fun for just about anyone!

    Hope your releif!

    Donna 

    • rachel23959
      rachel23959 donna03

      Posted

      Hi Donna, thank you so much for the advice it is very much appreciated especially the advice about pilates.  The physio that i saw actually recommended pilates but to be honest I think he just wanted to get rid of me as nothing he did was helping much! x
  • daryl65100
    daryl65100 rachel23959

    Posted

    Rachel my sympathies to you My Gp now puts everything down to arthritis just says "well you're arthritic " persevere with asking for MRI at least it proves you're not loosing your mind , I sometimes think I'm looked upon by others as some sort of hypochondriac  always having different places hurting. Shoulder neck head. Hip ankle foot fingers  not sure there isn't anywhere that's. Not affected now.  Feel at the end of my tether now . 
    • rachel23959
      rachel23959 daryl65100

      Posted

      Thanks for the reply, I know exactly what you mean about people thinking your a hypochondriac. People that don't have CS don't understand that the pain varies and is not always in the same place. Also it makes you feel ill with headache etc so it feels like your always ill.  I feel like everyone is fed up of my moaning about it so a lot of time I put up with it and tell people i am fine when im not.  I have decided I am going to push for an MRI and go from there.  I really feel for you having pain in so many areas.  I hope you find something that can offer some relief soon x
  • karen00354
    karen00354 rachel23959

    Posted

    Hi Rachel I have CS from c3 to c7 bulging discs or that's what it was 2 years ago on MRI, pain has gradually got worse I did have pain for years before that but just put up with it, now the pain is a 10out of 10 I've tried pt and acupuncture and cortisone injections didn't work, did pain management after MRI scan but to be honest I don't go now because the docs give me the meds I need,  I won't do surgery so have been on zormorph and recently been put on gabapentin which I find has eased the intensity of it, I also,have been give zoplicone to help sleep. I sympathise with you I work full time in an office so no escape from constant Pain don't get to relax and ease it a bit 
    • rachel23959
      rachel23959 karen00354

      Posted

      Thanks for the reply, its good to know that I am not alone with this but at the same time I really feel for you as it sounds like you have tried almost everything. I havn't heard of Gabapentin so I might have to try that one. Hope things improve for you soon x

       

  • donna03
    donna03 rachel23959

    Posted

    Rachel,

    I would get that MRI before I went on a wild goose chase treating symptoms. That seems tlike the logical starting point. I am a naturalist and hate taking an aspirin much less allowing myself to undergo the knife...but, if your pain gets bad enough, you will do whatever it takes to make it stop.

    But you have to know exactly what you are dealing with first.

    Pharmaceuticals may be your answer but the MRImay answer a lot of your questions. 

    I wish you relief soon. I remember how  the pain can consume your every waking moment.

    Donna

  • pauline87
    pauline87 rachel23959

    Posted

    I was diagnosed with CS in my 40s  I had a few flare ups but inbetween managed to live with the pain.  I am now 70 I have been diagnosed with Severe CS the last 9months the  pain had bee the worst its ever been. The  damage is at the top of my spine so I get pain at the back and top of my head as well as my neck and I can't turn my head much it's to painfull. I have been having physio every 3 weeks but it's not doing much good. I was wondering if any one has seen a charapractor and if so has it improved the Pain. Feel for all suffering from this condition. Regards Pauline x
    • Gerry_the_neck
      Gerry_the_neck pauline87

      Posted

      Hi

      I did Chiro many years ago.  I wasn't impressed,  in fact I thought it was a bit rough-handed for our condition.  They didn't seem to have much consideration for delayed after effects,  and there's little accountability if they get it wrong.  Bone-cracking is maybe ok where there is no degeneration....where there's a vulnerability, it's questionable at the very least.

      The only system that has worked for me,  particularly for easing headaches and thus making other symptoms more manageable,  has been adjusting sleeping postures..whether using a sofa,  experimenting with different pillows,  moving bed etc.  If the headaches can be eased this way,  the other symptoms can be better tolerated.  A cervical ortho pillow can also help with headaches.  It tends to be trial and error until something works,  because each individual has a different configuration.

    • donna03
      donna03 Gerry_the_neck

      Posted

      Gerry,

      I could not have said it better!

      I had the spinal surgery and you still have to deal with discomfort for the rest of your life. I have tries about 20 different pillows and the cervical pillow was best at first. I now use a feather and plump it where needed for side, stomach,or back sleeping comfort adjustments are easier.

      Guys there is life after spinal surgery and even if you have degeneration.

      I can't express how the yoga has helped to strengthen my neck and back muscles to support the head.

      There are times when I just want to lay down as my head feels like it weighs a ton. Especially after 6 weeks of wearing a cervical collar from surgery.

      I promise there is a great life after surgery if it comes down to it guys.

      BUT the recovery is rough! Beats the heck out of constant cronic pain which was my case prior to surgery.

      Blessings to all and I hope each finds that happy place too!

      Donna

  • daryl65100
    daryl65100 rachel23959

    Posted

    So Donna and Gerry you'd recommend surgery ?i have to decide by June if I do are don't the neuro surgeon said the surgery of taking c3and4 out and replacing with cage will only sort my arm pain out , my neck will still hurt the same "! On this info my gut feeling is not to have it and just keep having pain management by way of epidurals and drugs.  Any advice .??
    • Gerry_the_neck
      Gerry_the_neck daryl65100

      Posted

      Personally,  I haven't had surgery.  It was offered,  but I choose to try and manage the C/S as long as I thought it was manageable.  There was also the risk factor with surgery,  where some end up in a worse place.  It's different for everyone, depending on specific degeneration,  but I'd never advise yes or no to anyone else,  because I'm not qualified.  However,  I'd say that the trade-off decision for anyone shouldn't ignore the possibility of a worse outcome than what is already being experienced.  Bearability might be the crucial decider in that difficult decision.

      Different consultants will also give differing opinions....some will promote the surgery, whilst others might be more reluctant....again probably dependant on how the patient is coping with current symptoms.  The surgery should,  all going well,  help to ease the arm/hand issues,  but it will also create new issues for the neck itself,  and that can go either way.  I prefer to deal the issues I'm already familiar with,  than to have to adjust to the possibility of  new strains on the neck.  I think C/S issues change over time,  depending on nerve vulnerabilities,  and I just keep hoping that as I get better at managing it,  the symptoms might ease down.  Seems to work for me,  but I can't say that it would offer similar outcomes for everyone.  Even after any  surgery,  there arises a need to manage the C/S,  so,  in my thinking,  why not try the managing before having to make that decision.  For me,  thinking meds offer some solution just gets in the way of developing good management techniques.  They're ok for crisis phases,  but apart from that I find them a negative route...they don't actually address the real problem,  they just mask the symptoms.

      Best I could do in response,  and just 'opinion'.

    • donna03
      donna03 Gerry_the_neck

      Posted

      Daryl,

      Only you can answer that. I had no choice but to do surgery as my dis between C-5 and C-6 was actually ruptured. If I could.have not had surgery that would have been my first choice.

      I was facing.possiable.paralysis's if I did not have the surgery.

      I went three months trying to "fix" the neck holistic but found it difficult to do anything strenuous, including walking to.the mail box. And I was a kick box instructor when I ruptured my neck. I had to quit all.exercise for 6 months after the surgery to allow the fusion to fuse. I chose to use my own bone marrow from my hip. O am not familiar with the cage you were discussing.

      I know this is the hugest decision of your life. I don't understand why you only have until June to.decide. As Gerry pointed out, surgery carries its own risks as well.

      Praying for clarity beyond any shadow of doubt for you. If it turns out that surgery is your final pain relief option, I'm just saying there is life after. I don't bounce around quit as high impact as I used to do but I am back to very close to when i was health and pain free.

      I wish the same for you. Donna

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