Cervical Spondylosis ruminations

Posted , 21 users are following.

Over the years, I've experienced varying confusing reactions, from friends, relatives etc. to my cs problem and I just thought I'd explore these positive / negative influences and try straighten my head out so I can have a nice Xmas!

The problem is this...I can't expect the average person to understand, or even empathise, with the confusing assortment of symptoms I try to explain to them in an effort to reach an understanding of the limitations of my interaction with them, whether that be organising a social event, or just trying to focus and engage verbally. I have developed a disgusting patronising habit of pretending I'm interested when I'm really only concerned with the ache in my neck. Obviously, with c/s, there's a time to socialise and a time not to, and due to the unpredictability of the condition, this can get confusing and even lead to uncalled for bad reactions, again leading to resentment, anger etc. Nothing wrong with resentment and anger as long as they are not the demented children of misunderstandings!

I don't know if anyone else with c/s feels like this. In this post I'm going to try and unravel the conundrum and evolve a positive attitude, as a Xmas present to myself.

Firstly, I know it's not right to dismiss other's opinions just because I'm aware they can't grasp a complex problem of understanding...that would be patronising. Also, although I am aware of my aches / pains twenty-four-seven, I can't really expect a sympathetic ear whenever I feel like whingeing ( though it would be nice!). A lack of tolerance in this department is the norm. So, what am I left with. I must make the intellectual effort to find some middle ground that works for both, but most importantly, works for me, as I am the one who must go through this process to counteract the social stigma of rationally discussing chronic

ailments.

I will return and add to this later (must go out now). would appreciate any comments... eg \"Stop while your'e ahead\".

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  • Posted

    Hi Gerry I've only just come accross this website and your "ramblings" as you call them. lol I have enjoyed reading them and as a CS sufferer myself can relate to a lot of the things you say.

    However....where have you gone?

    Please start writing again, unless of course your condition has deteriated so much you can't. In that case I hope you will recover soon and recommence your CS blog!

    x

     

  • Posted

    Hi Gerry

    I have just realised that I had missed some of your later posts, having now found them I am reassured that you are still around but sound a little worse for wear. It gets more difficult as we age to accept the fact that we can no longer do the things we could (even from 6 months ago). It is bad enough is it not that we have a disability that is there 24/7 however mild or severe!

    I am now 63 and have always kept myself quite fit, but about 3 years ago I started to experience a stiff and painful neck.....and the rest is history, lol. I don't get any pain in shoulders or tingling/numbness in hands, mine is all in the neck and head. I find that it is aggravated by my job. My kind employers thought they would move me (and a few other over 60's with health conditions) to one of the heaviest jobs in store. I now work in the cafe where everything you do is lifting, carrying, pushing and pulling. I find its the carrying trays for hours at a time that puts the strain on my neck and I am usually in agony by the time I go home. Needless to say I now have a grievance process under way and have a meeting with my (new) manager on Friday. Dare I say things sound hopeful since I mentioned the DDA or the equality act as it is now called, so fingers crossed they will try to get me moved out of there.

    I was interested in the piece you wrote about sleeping, it is a biggy for us CS sufferers. I wake up numerous times through the night and have to literally lift my neck with my hand so I can turn over. When you say you sleep on the sofa....I can't imagine how that is comfortable but it must be for you, what position do you sleep in? is your head on the arm? I'm trying to imagine it! lol

    Well I am gong to say goodniight and I will go and try to find a comfortable sleeping position, I haven't managed to very much this last few nights.

    Till next time take care.

    • Posted

      Hi Kate56

      I am new to this but have put on a few posts to describe my condition which is horrendous to say the least.  Pain 24/7 and all i can say is it is "hell".  Anyway re your sleeping problem I have devised my own method of being able to sleep and wake up with minimal pain.  Best sleep I get is on a very comfortable couch sitting in the corner with lots of cushions to support my back and numerous "bean bags"- microwave type stuffed behind my neck, back and over my arms.   My partner tells me I seep soundly like this as I miss every tv programme but then I am also on huge amounts of morphine and other drugs.   At night I sleep sitting propped up with three very comfortale pillows and my "favourite" bean bag which happens to be a very flexible teddy bear tucked behind my neck.  I read my kindle like this and fall asleep easily waking up between 4.30 am - 7.00 am without pain when I dispense with "teddy" and go back to sleep for another few hours.   Pain is there when I waken up in morning but at least I am getting a few comfortable hours during the night and when I am sitting on couch.  I find sleeping sitting up is the most comfortable.  I cannot sleep lying down as it is too painful on my neck.  Try sleeping sitting up but support your neck well so that it does not fall backwards or forwards too much.   It works for me.   Hope it works for you.

      Take cre

      Arran103

  • Posted

    Hi Gerry the neck.  I have only just joined this site and discussion.  I haven't read all your postings cos to be honest it hurts my neck!  I will say though that I love your sense of humour and you sure as hell need one with this complaint.  I have found that when I have mentioned it to some people they have said ' oh I have that'  Well I believe that some people can have it but do not experience pain, Hard to believe but it doesn't help the credibility of the ones who do!
    • Posted

      Hi margaret39080

      I know where your coming from when you say that about other people. I have met a couple of people at work who have the same complaint and I know they are genuine, it's nice to meet people who really knoiw what your going through. However I've also met people who have said things like "I used to have that" ??? Well if they know of a cure I wish they would let me in to their secret! Lol 

  • Posted

    Hi margaret, and kats

    Somehow I managed to miss the last two postings, so apologioes for delay responding.

    RE: " I have found that when I have mentioned it to some people they have said ' oh I have that'  Well I believe that some people can have it but do not experience pain,"........I tend to put that common response down to people who fear their own empathy,  if you know what I mean.  Some people seem to think that empathy is contagious,  and they simply would do anything rather than accept the details of what another is describing to them,  for fear of the thinking about it being painful !  An extreme case of such behaviour seems to allow for the condition being thrown back in yor face, along with a demand that you empathise first, before you can expect their empathy.  Happens a lot,  particularly where people are a little unsure about what they're hearing in the first place.  It's a warped defence mechanism,  and those who use it are probably too insensitive to realise how hurtful it can be.  It particularly happ[ens a lot with 'unseen' or 'hidden' chronic conditions,  and usually pans out with the person with the condition patronisiong the ignorance of the doubter.  THere, put that one to bed !

    Hi kat

    Just to report, no worse than usual....the C/S fluctuates its exotic and multifarious evil designs upon me randomly,  but I also get good relief phases where normality returns.  All in all, I would say that of the last 30 or so years,  the last two have been my best,  mostly because I've gained a good understanding of the variables, and seem to manage the whole 'confusion' of it much better than before.  A clear head, with no muggy headaches really helps.  If anyone is overly worried about the long term degeneration effects,  I hope that might help to put a positive picture on what the future might hold.  Of course, it's different for everyone with C/S because of differing levels of degeneration,  but that doesn't mean that it can only get worse.  My experience says different,  and it is supported by research which shows that a good percentage of patients who don't have serious interventions, can improve to a reasonable self management level.  Begs its own questions, I suppose.

    Re the credibility issue....or as I like to call it  'The Sub-text of Disbelief'  which we seemingly must repetitively encounter,  like groundhog day, I think if anyone can come up with a good social ploy to counteract that unwarranted but common reaction,  I'm all ears !

    Regards

    Gerry

  • Posted

    Inflammation of disc degeneration. Fusions at C-5 and C-7 and shoulder surgeries in ' 93 and '04. Diabetes 1997. Cervical neck cyst infection 2005. Facet, Occipital, Neurogenic; PolyNeuropathy ensues. Nerve stimulator in neck 2012 (so no MRI). Operation for L5 Disc herniation/ compression and traversing right S1 nerve root and a Synovial lumbar Cyst was removed 2015, but only found DURRING the surgery. The surgeon trys to talk me out of the operation at first.

    Be brave and be  proactive. Yoy know how you feel and others only guess. This goes for some Dr. too. Do not let your friends and family bring you down with well meaning advice.

    • Posted

      " Do not let your friends and family bring you down with well meaning advice. "

      Maybe I can rephrase that as...."  Do not let your family and friends bring you down with well 'intentioned' ,  but unfortunately mostly meaningless advice ".   Is that too harsh ?

       

  • Posted

    Hi Gerry and everyone,  I am just coming up to about 8 months after having the injections in either side of my upper spine and the nerves heated to deaden the nerve endings (apologies as my fuzzy brain can't remember what this is called)  It has made a lot of difference to me and I don't experience the same amount of pain as I did, at least for now.  I also take  half a zopiclone sleeping tablet each night which makes a big difference to my sleep though it is responsible for my fuzzy brain.  I also have a flatish lumpy foam pillow with a not too fat feather one on top which I can mould around my neck. These go with me if I am staying away from home.  I absolutely have to sleep on my back as any other position is impossible.  the reality is that everyone is different and has to find their own answers by trial and error and other people's experiences. 
  • Posted

    Can anyone shead some light on this; I see that somone has notied me..I go there and it's an page of understandable computer sites??????????? Also does the power that it be often delete what you write? 
  • Posted

    Just stopping by to ask how are things going. All OK? (As much as possible with CS :P) Some new insights / ruminations? smile
    • Posted

      Hi Michael

      Yep,  still about,  and much the same  i.e. functioning better than I was five years ago when I started this post.  Less headaches, less fatigue,  and certainly less negative attitude about everything.  Tend to do my ruminating on two official neuroscience sites nowadays....'NOI' and 'Body in Mind',  both Australian neuro institutes exploring pain issues. ....might as well try and influence the people who create the thinking behind pain science.  That's a challenge in itself,  but actually I find these people very receptive to new ideas.  I'd recommend anyone interested in pain/consciousness issues, like yourself, to browse those sites for ideas.  Also I do some admin on a facebook site... 'Cervical Spondylosis Support Site', and add opinions every now and then. In other words,  so busy I almost forget my own C/S issues. 

      How are you getting along ?  C/S tends to be so changeable, I have to ask....any improvements or otherwise ? Nice to hear,  obviously.

    • Posted

      Good to hear you are feeling better (within the constraints of CS, of course). I also seem to be a bit better, still working on the negative attitude smile

      Did a quick check of Body in Mind, you seem to be 'Gerry Daly' there. A Google search for 'NOI' got me 'Nation of Islam' :D Actually I suppose it's noigroup. I haven't got a Facebook account yet, I suppose I'll get one at some point and visit your site. Your reflections are interesting so I'm looking forward for a new batch smile

    • Posted

      Also good to hear you are a bit better.  C/S can be full of many unwanted surprises,  but sometimes it's not always like that.  I reckon that most symptoms we experience are part of an attempted corrective adaptive process,  which sometimes yields positive results.  I used to think,  like most C/S patients,  that it could only get worse,  that the symptoms would worsen in relation to the 'unstoppable' degeneration....now I think it's more 50/50 which way it goes.  'Sofa sleeping'  works wonders for me,  where 'bed sleeping' just seems to increase and ingrain the symptoms.  

      Yes, NOI is noigroup.  A good post on Body in Mind last May/June was "No Brain, No Pain'.  Really got to grips with some issues.  Same with another post about the same time 'The Relationship between Pleasure and Pain'.  Can't link it because they'll delay this post here until they check it.  My big interest is in trying to encourage studies into the 'non-requirement for pain in deep sleep (Short Wave Sleep)',  and how that might affect the current thinking on pain theory.  So far,  it seems that studying pain and sleep has been dismally neglected...I suppose because it doesn't offer up career prospects...but I see it as offering many clues to the pain/consciousness puzzle.  Hopefully,  some of my posts might have asked the right questions to encourage some exploratory thinking.  I know it's an issue the pain scientists can't really avoid,  so a little perseverence,  in the face of reluctance, doesn't hurt.

      Nevermind the chronic C/S,  seems I've also got chronic inquisitiveness !

    • Posted

      >> seems I've also got chronic inquisitiveness

      Too bad that's not contagious smile

       

    • Posted

      Seems everyone has to go through a little journey which results in a realisation that the professionals don't always have the answers.  We all want to believe they do....but, they don't.  That's when the questions flag themselves up,  and they must be addressed with subjective intuition.  It's not contagious,  as you say.  Each individual must adjust to learning to trust their own 'doubts',  and then allow the issues to develop their own momentum.  With C/S,  perhaps one of the issues is we give the same respect to failing treatments,  as we do to sucessful treatments for other conditions....in other words,  our complicity is part of the problem. 

      I'm obviously in a fightin' mood tonite...I blame the vino !

    • Posted

      Update......Just to say......anyone interested in further discussions about C/S.......there's a Cervical Spondylosis Support Group on Facebook with 2000 members and counting.  Have a look,  and apply to join (closed group) if interested.

      Gerry

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