How do I cope with the excrutiating pain

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Diagnosed over a year ago with Cervical Spondylosis (or Degenerative Disc Disease as my doctor calls it).   I have little or no life now.   I have had every medication they can think of.   Only thing that worked was morphine with a concoction of other meds i.e. diazepam, paracetemol, anti-sickness tabs etc, Only problem is morphine has to be increased on a regular basis.   Now on 60mg tabs twice daily with oramorph 3-4 times daily.   I get very little relief from pain which rules my life.   I am at my wits end.   Doc now want me to try tablet called Duloxetine 60mg whcih is used for neuro pain in diabetics but I have read it has terrible side effects.   I am afraid to try it.   Has anyone else been prescribed this and did it help the pain.   I am also seeing private doc but so far it is not helping.   I am often screaming with the pain in my neck and even when it calms down a bit I am left with severe pain in both arms, shoulders and hands. Depression sets in often as I am unable to do any of the things I used to.   I cannot lift anything heavy (even my little grandson) .  Any form of housework is a no no and my social life is almost nil.   I had my driving licence revoked from DVLA because I am on so much morphine (could hardy drive anyway because of the pain). Although I am 67 up until a year ago I had a very active social life with only severe headaches.   Now my pain rules my life.   Good to find this site and let off a bit of steam as not many people understand this type of pain (Ihave had two children and childbirth was nothing compared to this kind of pain).Would be good to talk to others and find out if anything helps their pain.   Been to pain clinic and physio neither of whom could help me.  I feel I have been abondoned by NHS.   My doctor is sypmathetic but is struggling to help me.   Tried ice, heat, baths lidocaine patches (even an alcholic drink on occasion) but nothing helps.   Anyone out there help me please?   

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  • Posted

    Hi Arran

    so sad to hear you are not coping  well with pain and you feel depressed. try to look on the positive side you have a wonderful grandson.(even though you cant pick him up! I know what you are going through i to am on morphine(patches) and also oramorph plus other pain relief. I think you should you should look at what you can do not what you cant!! I was very active as well and i was in a dark place so i do know how you are feeling! Did the pain clinic not help you?I was refered to the clinic and i have made some good friends and i still see them once a month for lunch but we can phone each other any time to have a  good moan because no one knows what it is like  to be in pain all the time unless you have been there?I have had physio and that did nothing for me had facet injections again done nothing for my pain. I have  pain all the time had pain since i was 10yrs old(59) now so i have not known a day without pain and it is getting worse but i look as i said at the things i can do not what i cant.But this site hopefully can help you  nad keep on to GP if he is sympathetic to your pain and he will refer you to the right doctor to help you.Sorry to ramble on but i look forward to your next post. If you feel depressed talk to your GP and he should send you to get help or help you himself so please keep positive and write again smile   

     

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    • Posted

      Thank you so much for your reply.   This site is a God send.   I do feel gratitude for the good things that I have in my life.   If have five grandchildren - four live near me and I do see them on a regular basis.   I feel so much gratitude for my partner.   Without him I couldn't cope.   I dont know how he puts up with me at times.   Within a year I have gone from being able to jive 3 times a week, do charity work every week, look after my 3 year old grand son, cook, clean, garden write books, help others, drive to being able to do almost nothing.   Anything causes me excrutiating pain.   I am no so limited in what I can do.   I  can't even change the bed!  I have a wheelchair but need someone to push me as my hands are useless.   I drop everything, need help with washing, dressing etc.  I cannot use public transport on my own so I need someone to take me wherever I have to go, hospital appointments etc.  I have lost my independence in such a short time.   I know it sounds as though I am grumping but  it is hard.   Pain clinic dismissed me as they can no longer do anything for me.   They have no facility to meet up with others to talk etc.which I would love.   I tried the Pain Association Scotland,.   They have ONE meeting every 8 weeks and the last two were cancelled at short notice.  The venue is quite far from me so I need someone to take me and bring me home.   I rely so much on my partner to drive me places and he is so willing but I feel I dont want to burden him any more than I already am.   He still takes me to dance class once a week although I can only do a few short moves with him before the pain sets in but at least I am getting out, getting dressed up and able to talk to friends so that is a plus, Doctor did send out someone re my depression.   All they could offer me was anti-depressants!   I asked could I talk to someone on a regular basis but they would not offer that facility unless I took the anti-depressants!  I feel anti-depressants wont help me or the pain and I am on 30 odd pills a day.   I don't need more pills.   I need someone to listen to me and sympathise.   The anti-depressant my doc gave me is called Duloxetine.   Report on it are not good.   On top of all my other drugs, I would be a walking zombie.   I am afraid to take them.   Have you heard of them.   Sorry for rambling on but its so good to be able to talk to someone who unerstands.   Thank you for replying and giving me hope.   We discussed buying am adjustable bed.   Have you or anyone else tried this?   Don't  want to spend a\round £1,800 if its not going to help.Again thank you and keep in touch please.   It is so good to be able to communicate with someone who understands.

      Many thanks

      Arran103

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  • Posted

    hi arran.........i am new to all this, whilst i went to a neurologist surgeon privately, with spinal stenosis ( which will have to wait - keyhole for that one ) he was thorough and spotted my upper reflexes..... I have csm, and it is compressing the spine. so i am due a fusion in a few weeks............

    In my case i have not neck pain, but have the other symptoms only though from time to time. clumminiess, slight balance& handwriting wobbly...

    which i had not mentioned to my dr.

    The surgeon decided on a fusion to prevent any spinal decay.

    Might be worth a rererral to a neurologist -

    kind regards cheshire guy

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    • Posted

      Thanks for replying. I have seen 3 neurosurgeons who are not willing to try any kind of operation as it would have the possibility of leaving me paralysed. I already have spinal decay so op is not an option.Damage is too severe to attempt any op. Thanks for trying g to help. Hope all goes ok for you.

      Best wishes

      ARRAN 103

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    • Posted

      thanks arran, and i do wish you well, thank you for repyling... would appear i just have the compression..... and he is doing the op to prevent any deteroration - not loking forward to this one bit but if it will save me huge problems later on - it has to be done.

      many thanks

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  • Posted

    hi arran......... just thought- i would add......... i changed my mattress to a firmer one ( a john lewis ortho 1400 ) it's not a plank of wood!!!, and also a tempura pillow which is firm........... and have found the pillow amazing..... takes a few nights to get used to but very good.................
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    • Posted

      Hi Cheshireguy we had thought on buying adjustable bed as I have been in hospital a few times and found their adjustable beds were good - less pain in the morning and easier to get to bedside lamps etc.   Would really like to know if anyone has bought one and if they helped.   Anyone out there bought one and did it help?   At the moment I use three pilows with various bean bags to support my neck and I tend to sleep sitting up.   I feel this lessens my pain in the morning.   Its amazing what you will do to help lessen the pain.   Thanks for your help

      Arran103

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    • Posted

      Hi Arran103,

      ive just been reading your posts, and fully understand your pain.  I'm 45 and was diagnosed with CS just over 4 years ago, which is probably the last time I slept through the night without pain.  I bought a Mediflow Waterbase Fibrefill Pillow which I bought from Amazon.  You can fill it with water to the right height and position for you and to date, it is the best pillow I've ever had.  I also find swimming helps keep me mobile and it also gives me the chance to pick up my 6 year old son in the water and give him a huge hug as I've never been able to lift him since he was a baby! I don't think people really understand the debilitating pain CS causes unless you have it yourself, it's so sad to see so many of us with it.  I try to stay positive and live life as much as I can, sometimes suffering from it afterwards! I made my daughters birthday cake last week and have been in pain ever since, but I won't let it stop me from being mum!!

      Take care

        

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    • Posted

      Hi carole51114

      I agree with what you say it has never stopped me from from being a mum to 3 (all grown now) but i used to do all sorts with them and again like you suffer from doing it. But i stay possitive because if you dont you can hit rock bottom with it and sometimes still do even after all these years(49) 59 now had it all my life but as i havesaid when you are younger i think you can cope better with pain! I will have to look on Amazon for the pillow as you know you will try anything to find relief 

        Take care jeanetterolleyes

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    • Posted

      Gosh, that's such a long time to have had it, when you read about CS, they say it normally happens in old age....I was 40 when I first started with the pins and needles at night and 42 when the MRI scan showed all my disc bulges....46 soon and I have to say, I do feel pretty down every now and again, but a good cry on my wonderful mums shoulder and I carry on!  My main upset is that I'm a cake decorator and artist and I find I can't do what I love anymore because the looking down kills my neck and I've had to stop.  Heyho, but on the plus side I have a wonderful family that take my mind off the pain! 
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    • Posted

      Hi carol51114

      It is a long time to have had it started when had operation on back when i was 10 pain never went away when i woke up and stayed with me ever since and slowly got worse over the years.Had steel rod inserted (curvature of spine) top of neck to bottom of spine so always ram rod straight as they say and every thing has fused together and CS kicked in straight away!But i look at myself as one of the lucky ones as i was 1 of 3 who was the first to have it done (it was experemental) never been done.They have told me i might end up in wheelchair. I used to love walking.I have a good family to and they are very helpful and i have a good husband even though he is not wll himself (oh the joy of getting older)!!!LOL The numbness gets to me as i drop things i am lucky i can still drive not far and not for long but i can go out to visit my 2 sons and they come to me quite a lot they make sure granddaughters are not to energetic LOL Well i  have  gone  on for a while  

      so Take care jeanettexxsmile  

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  • Posted

    If anything, alcohol makes things worse in my case. If I drink enough to numb the pain, after the effect goes away, I'm in agony.
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    • Posted

      Hi Michael b

      I don't tend to drink much alcohol as it doesnt really mix with all the morphine I take.   The odd sherry at dinner time is my limit.   On holiday recently I did drink a bit more but didn't find it lessened the pain, maybe at the time but next morning it was right back there!   Wish there was something to take away this constant pain.  I vomit a lot as it is so severe and have to have my drugs by injection from doc.   I am trying to learn to live with it but it isn't easy when you are lying in bed in agony at least five days out of seven.   Anyone else out there with any suggestions which works for them?   I am tired of this constant agony.   Thanks again michel b

      Arran103

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    • Posted

      Just one last thing, I found myself a wonderful private Acupuncturist, who I see weekly for 90 minutes, it has really helped me and I've managed to have a few nights sleep.  I did have ia course on the NHS for 8 weeks, but that was no way as intensive as the private Acupuncturist and didn't really work aswell. 
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    • Posted

      Hi Carol

      Acpuncture makes me pass out but I am going for Bowens treatment which is like acapuncture without needles so will let ou know how that goes.  Just had horrendous week as I posted to Jeanette so you can read my rant.  Running out of ideas here to help the pain.   The thought of this going on for ever really gets you down.   I just try to enjoy the odd day when I have very little pain and can be "normal".   Hope someone can come up with something on here that will really help the pain.   Hope you have a pain free week.

      Arran103

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    • Posted

      Hi michael-b

        Just a quick  post to see how you are keeping? I hope you are not to bad with the pain and that you are coping as best as you can?  So hope to hear from you soon and take care jeanette

       

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    • Posted

      Hi michael-b

      Just a quick post to see how you are doing?It has been a while since i have seen any posts from you! I am just the same well a little worse but nothing you can do really is there apart from grin and bear it.They thought i had heart failure about 3/4 wks ago but GP said nothing to worry about!!  well as i said just a quick one and hope to hear from you soon so take care jeanette

       

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