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Cervical Spondylosis ruminations

  1. 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\".

  2. About 3 years ago, I fell off a stepladder at work and cracked a rib. I went to the hospital, but with no xray, they didn't spot the rib..so I carried on working (the heroic self determination of the self employed!), thinking it was just bruising. It hurt for 2 months and was uncomfortable sleeping, but gradually improved. They only spotted it 6 months later when I had an xray for coughing. Anyway, what I want to get to is this....a normal injury, though very sore, with every possibility of healing was really quite an easy challenge when compared to c/s. By comparison c/s, to me, is like being bashed over the head whilst you are sleeping, with no warning and the likelyhood that it will happen repeatedly, as it pleases. Any trust in the healing process is soon undermined and the only relief is a constant supply of painkillers and a lot of self management to minimise the risks of reoccurrence.

    The normal rules of injury/healing do not apply. Knowing this, it is not hard to realise that others find it difficult to relate to - most well wishing will fall on partially deaf ears because I already know that it is not likely to improve with time.

    This is the point of interaction which I am currently trying to focus on and find workable solutions to avoid future misunderstandings, or failing that, to just humour myself along the way! I'm thinking hard here and may wander off into dead ends, but I think it's worth exploring. I'm trying to find the bridge between what looks like, from the outside, some pathetic self pity and conveying a rational acceptable description of my c/s symptoms untainted by suspicions of exaggerated, hypochondriacal (is that a word), negative attention seeking subterfuges....feeling a bit dizzy after that one...maybe the headaches are just from straining the grey matter !!!!

    Even the experts...doctors, neuros etc, although generally sympathetic, will shut the door on c/s because it challenges their professional integrity. It's hard to admit defeat, and I accept that, but that, in itself, should not become an obstruction to further investigations or referrals to any specialists out there who may be more capable of giving advice. This I encounter all the time. They don't have an answer, except, keep taking the painkillers and although this may be the acceptable treatment of the day, it doesn't really move the problem forward into areas where rethinking the problem might encourage new treatments. They even seem reluctant to offer advice on self management....maybe, they just don't know. There really isn't enough information out there to help c/s sufferers. Is this the first stirrings of a new protest group \" C/S Sufferers against Underachieving Doctors\" and can I be leader????

    Seriously, I want useful advice on how to cope better without resorting to

    wishful thinking about some new miracle painkilling drug.

    Later...

  3. Moving on....I'd like to explain the types of aches / pain my c/s causes. These amount to the following in terms of severity and effect: headaches ; sore head ; stiff neck ; aches in shoulder and arms ; general unwell feelings. I know, from days when I feel ok and can rationalise it, that most of these symptoms, when not topped up with a headache or sore head, are quite manageable and I can function without too much stress. However, when the headaches kick in, my resilience seems to overload and I revert to some kind of negative overview of my health in general. Depressing. I've heard of this phenomenon being called Automatic Negative Thinking Syndrome..ANTS. Knowing this, and knowing that my normal rational thinking is somehow negatively warped on bad days, I have to find a way of not letting headaches affect my attitude like it does. Not easy, as it is hard to see a light at the end of the tunnel when suffering a c/s headache. It's not like you can just go to the dentist and have a tooth pulled and Hey Presto pain gone. Perhaps a little word of praise for the power of nurofen would not be innappropriate here. The quest is to make myself believe that the aches and pains will pass and not get stuck in an irrational mindset. I'm working on this!

  4. hi gerry the neck, do you think the fellow sufferers from this site should get together and gang up against the gp's of this country, we need to provr to the doctors that what we suffer is a real problem and debillitating. do you think they would listen, because i dont. it took several years to be diagnosed and only with the help of the good people of this site yourself included that i have realised we are not alone in this. thank you everyone. MERRY CHRISTMAS AND A HAPPY NEW YEAR.

  5. Likewise...they wouldn't listen. But in the meantime...Merry Xmas to all.

  6. Moving on....Following on from my thoughts on other peoples perceptions of my descriptions of c/s and how it affects my interactions with them (my experience has been a negative one where I've had to evolve a kind of denial to compensate for their understandable lack of empathy and their difficulty accepting my varied and confusing descriptions of woe...I think a lot of fellow sufferers will identify with this).

    One idea I've had is to pose this question to friends....\"I'm writing a book about my experiences with cervical spondylosis, focusing particularly on social interactions and their effects on me. How do you think I will portray your interactions with me, over the years, and, secondly, how would you wish your character to be portrayed?\" The object of this test (obviously, they won't like being tested in this manner) would be to encourage the subject to revisit their own thoughts on why they have maybe, at some time, come to a convenient negative conclusion about my condition / descriptions. All going well, this should, in turn, relieve me of the responsibility of always compensating for their seeming lack of empathy and, also, relieve me of the responsibility of justifying their denial of what I experience. Does this make sense? ( or should I choose the bed by the window in the asylum??????).

    I suppose the real purpose of this would be to re-create a level playing field where I don't sense any subtext of disbelief...because this is the bit that I find sooooo irritating, and always have.

    As for doctors, I don't think this approach would unlock any doors of perception (yes, I've read Huxley!) . It's too flippant. However, I'm thinking about what would be the best thing to say to a GP to stun them into action and maybe to inspire them to rethink their standard negative responses to a patient who visits them complaing of c/s.

    Any suggestions here would be welcome.

    Doctors have a way of blanking anything that challenges their limited understanding of anything that goes beyond their training (I'm sure they're not like this at home...but thats no excuse), so the trick here would be to subtley assist them to realise their limitations and in the moment of their acceptance of this realisation, to offer them a new challenge..i.e. \"Current treatments for c/s are already past their sell-by date...Where do we go from here??????. After all, they are well paid professionals and should have an inquisitive and enquiring nature when it comes to dealing effectively with unsolved problems.

    I apologise for my postings looking a bit like a discussion with myself. Any comments/ideas are welcome....JUST DON'T INTERRUPT ME WHEM I'M ON ONE!!!!!!!!!!!!.

  7. Afterthought....I've just had a vision of myself as Jack Nicholson in The Shining repeatedly typing \"All work and no play makes Jack a dull boy\" \"All work and no play\" etc. Help!

  8. Hi Gerry, have been following your ruminations with great interest. Thank you for the phrase \"subtext of disbelief\". I've been trying to think of a succinct way of describing the attitude of friends and doctors when you know they don't really understand what you're experiencing. Indeed, I'm not on speaking terms with a friend of mine at the moment who I asked for advice but who proceeded to criticise me. You're right about doctors having a way of blanking any suggestion which challenges their knowledge (or, even, their opinion, I would add). I've experienced this a few times. As I've said elsewhere on this forum, it took twelve years to convince my GP that I had severe degeneration in my neck when he couldn't deny the results of an MRI scan. Having recently undergone a cervical epidural, I'm not happy with the outcome of this procedure. Despite writing to the consultant beforehand pointing out that a specialist NHS Trust says in a publicly-available leaflet that an epidural is not effective for neck pain, she wouldn't be swayed from her opinion and failed to comment on it in her written reply. Indeed, when she spoke with me on the day of the epidural, she asked if I was the gentleman who had written her a little note. When I referred to the opinion of the specialist Trust, she rather annoyingly changed the subject. I think Chris215a has the right idea further up this thread when she suggests that we fellow sufferers should get together, not necessarily to gang up against our GPs, but actually to talk to each other, to compare our experiences with CS and the reactions (or lack of them) that we receive from doctors, friends and, in some cases, Government departments. Indeed, just yesterday, I found a rather interesting article by Dr Allan Binder of Lister Hospital, Stevenage in which he says that \"Less research has been performed into cervical than lumbar pain, as severe disability is less common with cervical disease.\" Surely less research indicates that severe disability from cervical pain just hasn't been proved yet. So, perhaps, someone should conduct a survey into CS and related conditions. I know that we both responded last month to the occupational therapist who was writing an article for healthcare assistants on the subject. Although we both asked to see her finished article, I'm not hopeful that we will hear further from her. Maybe she will prove me wrong. I hope so. But we have no way of contacting her so cannot tell what use she has made of the information we gave to her. Anyway, I'm going to climb off my soapbox now. Watch this space for further comments.

  9. Thankyou for your thoughts - I have to agree with you 100% on what you say. People just don't seem to 'get it'. I've been off work for 2 years now as my symptoms are just too much for me to cope. Even leaving the house is a big deal these days but what really gets me is friends asking \"are you back at work yet\" or \"going anywhere nice this year?\"

    I understand its not their fault and its only because what we have to deal with on a daily basis that makes those sort of questions almost laughable. Anyway, I was wondering if anyone has any ideas on what to do to make a living? I have tried many different organizations with no luck at all. Imagine my surprise. The conclusion I have come to would be to work from home and be able to work when I am able to do so. There has to be something I can do!! Maybe you do have a job - I would love to hear how you manage your pains in order to work.

  10. Hi Mike, I'm not sure whether you're responding to my comments or those of Gerrytheneck. But, whichever is the case, I fully endorse what you say. I too get people asking \"Are you feeling better?\", \"Are you looking for work?\" and \"Going anywhere nice this year?\" If I'm in a particularly irritable mood, the last question receives an answer such as Sainsburys. I've even had people say to me \"You don't look as if you're in pain\" which makes me wonder what expression I should adopt. Your thoughts on making a living mirror my own. I know that I cannot do a conventional job, even a part-time one, because the employer will not be able to see what's wrong and I will get a reputation for being unreliable or a shirker. I also came to the conclusion that working from home at my own pace was the best solution. That way, I wouldn't be directly disappointing anyone. But the reaction of friends was that I should either pursue the benefits route (which recent experience tells me is a right pain in the backside) or get a job stacking shelves at Tesco because that would be a secure and steady source of income. I nearly stabbed the person who made that last suggestion. At the moment, I have no source of income. I was receiving Income Support but that stopped last year when I failed a Government medical. My local Jobcentre has advised me to claim Jobseeker's Allowance. But, when you do this, one of the first questions asked is \"Are you fit for work?\" If I reply Yes, I'm lying when you're meant to be providing a truthful answer. If I reply No, they ask why I'm claiming Jobseeker's. The whole procedure is like driving down a road, reaching a roundabout and not being able to find your way off that roundabout for a few weeks. You then find the right exit, only to end up at another roundabout.

    Finally, Mike, instead of posting as a guest, why not become a member of this forum? You may well find it useful as you'll be able to exchange private messages with other members and compare your experiences directly with those people.

  11. maybe we should all wear a plackard round our necks saying we are in pain dont ask how we are. i know that is silly but because we can smile and laugh like everyone else, we are thought of as shirkers. idk800 have you applied for incapacity, i am on it long term it isnt much but it keeps the wolf from the door. i was told by a physio once that the patients that show up looking like they are in pain are in fact faking it, us poor people that hve constant pain seem to be more stoical.

  12. : ldk8000 - I too was asked \"why not get a job in Tesco's\" Made me laugh - well its either that or cry.With Incapacity Benefit you are allowed to work around 15 hours a week without it affecting your claim (assuming you find a job you can actually do!). I was looking into training to do Web Design thinking I may be able to work from home - nice big comfy chair and no public transport!!

    I do emphasise with Gerry the Neck - your quest for the ultimate coping mechanism will surely be an epic journey. For over a year I was 'self medicating' ie lots of booze and several illegals. Proud to report that these days I'm fully sober. The best thing I've found for me has been to learn to play the guitar. Not easy with a neck like concrete. But as with most instruments the idea is to sit with good posture and to be relaxed!! Playing music has many benefits - its mostly free, good for the soul, keeps the mind active, passes time productively and gives a sense of control that I'm sure a lot of people here feel they have lost in their lives. I know I felt like that for a long time.

    I'm looking forward to reading more of all your posts - also waiting for conformation of membership :D

  13. I forgot to put my name on that last post. :oops:

  14. Odd, isn't 1t? I specifically asked not to be interrupted..and yet! ......Obviously I'm so interesting and popular that I cannot be expected to reply individually to readers comments on my postings!....Only joking. Seriously, I promise to read all your comments once I've finished writing my book.

    later

  15. What can I say? Your posts sparked inspiration and a desire to share. Sorry for interrupting :wink: Good luck with the book. If it's as 'interesting and popular' as you then we are in for a treat.

  16. Fellow sufferers will be aware, I'm assuming here, that a lot of prime thinking time can be overwhelmed with anxiety when you have to prepare yourself for events, despite the aches and pains. I'm sure this is true of most painful conditions. Due to the nature of my c/s, I have on many, many, occassions been almost traumatised by, having made an arrangement...work, social etc., to find that, on the day of action, my resolve has been destroyed and a huge effort is required if I'm not going to publicly declare myself unfit for purpose...there's too much to lose. I think my regular customers ( I'm a self employed decorator) see this determination in me and, although they are unaware of my predicament, they sense that I'm the type who will always overcome any problems and finish the job satisfactorally. Strangely, some of my best customers are GPs and Consultants....this I might deal with on another day, when I'm in a bad mood! Little do they know how I wobble on the edge of committment. Wouldn't it be nice to just sit back and focus on my own comforts!

    Anyway, all this determination, control and managing c/s gives birth to its own negative opposite...Anxiety. To me, anxiety is like a fungus which, once it finds an area of the mind occupied by confusion and indecision, will spread it's tentacles (spores) to cause further chaos. It really only exists because we allow it a vacuum to inhabit. I'm talking traumatic anxiety here, not your normal anxieties, which are a neccessary element in coming to rational decisions. There seems to be a point of pressure, where normal anxieties can tip over into Anxiety/Depression and c/s sufferers should be wary. From my own experience, I know I must be vigilant when it comes to expecting more from myself than I am physically or mentally capable of. My current motto is \"Know your limitations and treat other peoples expectations as suspect\"...my predicament is special and must take precedence in any decision making process.

    Back to anxiety (High Anxiety). Some years back I had a really bad spell...it lasted 4/5 months...when my anxieties rendered me ineffective -- no work, no social life, to be honest everthing felt a lot worse. I didn't need this on top of my usual aches/pains...so, eventually, was forced into thinking my way out of it (although at the time I didn't even realise this was what I was doing). This was my solution: Visualise anxiety as a parasitic element in your mind. As explained before, it only multiplies itself when you allow it to feed on areas where you have dropped your normal defences. Dropping these defences is a voluntary act and you are just as capable of raising them again, at will. Because, after all, your survival instincts should be master of your mind and, under normal circumstances, your instincts would kick in automatically to protect you from your own confusions. Easy to say, but when Anxiety has established itself as surrogate master ...it must be dislodged with force - mental force. A great weapon in Anxiety's arsenal ( as a Spurs fan I really hate putting that word into print!) is it's ability to convince you that you are, as if by nature, an anxious person. Not true. Your levels of anxiety depend on your willingness to allow them to proliferate. Ignore the confused areas, ignore any seedlings of negative doubt. They only exist to feed off your resolve. Focus on your primary needs i.e. the relief of aches and pains, and Anxiety will hopefully become something which is humoured rather than obeyed. I feel a Biblical complex overcoming me...\"And He didst smite the Great Evil with Cuprinol Anti-Fungal Agent, which does exactly what it says in the bible\".

    Again, I hope this makes sense. That will depend on others' experiences. To get back to a more normal posting, I used to get anxious (not High Anxiety) playing guitar, because I would lose the rythym or, due to tension, get tunnel vision and eventually lose the plot and f... up. It really an

  17. Hi Mike5172,

    Didn't realise we'd moved on to Page 2. Gridlock on the Patient UK site. See what I mean? Really, thank you for your comments.

    I'm humbled, and I wont forget to give a mention to your support during my acceptance speech at the award ceremony.

  18. Onwards and upwards. I'm in the zone now. The other night I kept myself awake for hours thinking about this next bit...but it was constructive thinking and I felt quite good about where it was heading. The theme was \"What exactly is Cervical Spondylosis, what are it's causes and symptoms, and are the bodies natural healing powers capable of dealing with it, given the right circumstances\". The Biggy..Heh? So, here goes.

    1: What is C/S? At some time, two bones in the neck vertebrae have clashed together causing slight splintering at the ends (which may still be lodged in the surrounding tissue) and leaving jagged ends on one, or both, vertebrae bones. The tissue ( muscle mostly) would normally try to remove any foreign bodies but, because the splinters are bone, it might not react as it would (bone being a recognisable matter which belongs in the body) and chooses to ignore. The jagged ends will, over time, try to mend themselves (the wonders of DNA) and probably include a tendency to overcompensate, as happens with bone fractures/breaks in other parts of the body. So, the meeting vertebrae may have evolved to be too big for comfort. The vertebrae, themselves, are not a direct source of pain. It is their interaction with the surrounding tissue and nerves which we know as the chronic painful condition Cervical Spondylosis. Please remember, I'm just an amateur trying to rationalise something which, I feel, has never been explained to me satisfactorally. Anybody, out there, who knows better...I'm all ears ( or eyes, in this case).

    2: Symptoms. ( I almost set my notes alight just now with an inappropiately held ciggy...Is that a symptom? Also, I've just admitted that I use notes...Is that a problem? ). Seriously, I need to discard any symptoms which might confuse the issue of where the source of pain is. Any pains/aches in shoulder, arms, hands, chest etc. are referred pains, a result of nerve pinching by either bone, or tissue, or muscle in the neck. Those areas, shoulder, chest etc. are most likely perfectly ok. It is just a false signal from the nervous system to the brain. I interpret this as the nerve throwing the rattle out of the pram because it knows it is in danger (in the neck) and it is trying desperately to draw attention to it's plight. For some reason, the only way it can do this is by causing chaos elsewhere, in the hope that we can decipher it's confused messages and proceed to protect the neck from further aggravation. Sciatica in the leg is similar. So, we know the problem is in the neck...thus we can discard these referred sympyoms as useless in determining a solution for the neck.

    Likewise, any headaches, muggyhead, dizzyness are caused by over-stiffening of the neck muscles at the base of the skull which, in turn, is a natural protective action, by the neck muscle, to minimise any neck/head movement which might result in further aggravation at the source of the problem. These too may be discarded for investigative purposes.

    Now that we have got rid of the Great Confusors, we can deal with the real problem. Really, I know it is difficult to ignore these painful symptoms and I am expecting a lot of flak in response (go easy, Im just trying to think outside the box)...but they are false indicators. I swear, I am not in denial of any c/s sufferer's pains. Also, I am only dealing with c/s at the rear of the neck (c4,c5,c6) here, as this is all I'm familiar with. But the same logic could be applied to c/s in other areas (side or front of neck) I'm sure. I will call the prime source of the pain, the only damaged area, the \"P Spot\" for convenience.

    It seems, to me, that tilting the head upwards and backwards, raising the arms above shoulder height to work, or lifting awkward things are the main culprits in aggravating the P Spot. We may not feel it at the time, but the repercussions will kick in, without fail, and continue to cause havoc long after the initial aggravation. Also, when

  19. Hiya Gerry smile

    I love your posts, but have one complaint (forgive the northern humour) they are too long, me heads dropping off by the time I get to the second paragraph :wink: .

    I think your rumminating is in the right area, but have to say that CS sufferers will each have their own level of pain and managability, each will have their own coping strategy whcih they will have developed over the years, and most if not all of us have days when it is physically impossible to do anything.

    Your point about reaching up, or lifting anything heavy, which would hit the p spot, I can't agree with you there Gerry my pain is pretty constant, but maybe my pain threshold is rubbish, but it's not only the pain we have to contend with but also the dreadful tiredness that overcomes me, the muscle and joint weakness too.

    More soon

    Emxx smile

  20. Also Gerry,

    If you go to the ARC website, (I can't put the url here, have tried, but it was removed for some reason) :roll: Typing the relevent topic in the search bar, will reveal some excellent information

    Em smile

  21. Hi Aunty Em.

    Accepted. I didn't get out the day I did that last post. Gotta watch that! ....but I had to get it out of my system. Sorry about the dizzy head. I do try to add a little humour to ease the mind and maybe all I will achieve is end up with a semi-decent stand up comedy routine for my troubles. So it goes.

    I do accept that some c/s sufferers have a more consistant and more painful condition than me and I do try to allow for this and not step on any toes, but it is difficult when the symptoms vary so much. I never did finish that last year at the Moldovan State Sponsored School of Charm...I belong to an ethnic minority myself, so I can say what I like right? I do know about the fatique and all that goes with it, but I will say that, as someone who works manually (when I can), I am quite often surprised at how these demons are pushed to the back of the mind when neccessary and are often at their worst when I'm relaxing at home. Again, this only applies to my c/s levels and I'm not advising it for anyone else. Not everyone has the opportunity to engage in physical stress at work (that one has always put me in 2 minds and maybe self cynical). However, I do wonder if, although our capabilities differ, the demons are similar.

    Have read all your posts with interest and I will definitely check out the ARC site you mentioned and let you know.

    Gerry

    ps I've taken the unprecedented action of uploading a rather nice picture of my friend Baba the cat for some light relief.

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