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\".
2 likes, 261 replies
raytheman
Posted
Re ATOS, they take no notice of your reports from GP or hospital, only what they see, nor do they take any notice of what you say.
Yes agree it will be a fight, I was a chef for 40 years, now all gone.
Well hope you have better luck with than a lot of others myself included.
Think they like to put lots of stress in the hope you go away.
ATOS are very clever, if you turn up for the assessment, you fail, if you don`t you fail. catch 22.
jjeremy
Posted
Smoll
Posted
make sure you do not go alone, if you arrive alone with no problems they assume you can work.
If you have 2 walking sticks they wont even medically assess you as it's obvious you are unable to even use 1 hand when standing and therefore unable to work.
Go looking untidy and unwashed (put away your pride) if you look like you can look after yourself you can work.
Try not to give too much eye contact and fidget as much as you can, if they see you aren't comfortable and can not relate to them you will be deemed as unable to work.
I sent in letters from my neurosurgeon, pain clinic, and rheumatologist (I have mobility problems due to another disorder that actually caused the CS) and related everything back to
Do not remove your coat, that gives them a chance to see you can do things that you might have stated you can't do.
When writing out the form, write it as though it is the worst kind of day, make sure you list any side effects from the meds you may take and if fatigue gets to you don't forget to tell them you are often too fatigued to be able to concentrate. It's advisable to tell them if you feel you feel unsafe at times ie: from falls.
If I think of anything else I'll make a new post, but my arms are killing me so I'm off now. take care all
Gerry_the_neck
Posted
Glad to hear you got ESA and good luck with appeal for support group. Hope it helps with some of the 'survival' pressure.
Ta for post. Have to say I find it a bit depressing when the simple truth is simply not enough. Seems thats the way it is. We have all the reports and then we must exaggerate on top. Im sure there was a better time when the reports would have been enough without the 'dramatics'. Just makes me think our safety net system has been polluted with warped intentions by administrators who are more concerned with their own goals rather than any empathy for those less able. Seems the wrong type of people have been put in charge of assessments and we must jump the hoops to appease them....All Wrong, and undignified to boot ! I worry about the future of our 'democracy' when basic safety net systems can be turned this way to favour the admins. Its a creeping denial of individuals rights with little regard for the damage it causes. I used to read 'Alan's' posts on his battles for DLA and I now appreciate what he was up against....horrendous !
I still haven't made decision to apply or not, stuck in the middle a bit, but circumstances may force that issue. Not looking forward to the aggro involved. Anyway, thanks for advice...it may be needed.
Gerry
Gerry_the_neck
Posted
Just following up on old ruminations. I recently had a phase of 'mimicked' Thoracic Outlet Syndrome (Pain in Shoulder Blade, Pins/needles in hand, and cold hands)...lasted about 3/4 months, and still lingering a bit. Just wondering if anyone else has experienced similar as part of their C/S ?
Smoll
Posted
Those were my presenting symptoms along with torticolis. My initial symptoms lasted around 6 months, then they seemed to get better for a time. It comes and goes. It's been 3 years since I was 1st diagnosed and I've had the most success, keeping the worst of the symptoms away, by wearing a buff (thin tube of stretchy material) or a scarf. I wear the buff for bed too as I've realised if my neck gets cold during the night I can suffer for the next few days. I've also realised that prevention is way better than the cure. They are gender neutral so even you chaps can get away with looking devilishly stylish.
Gerry_the_neck
Posted
Hope you're well. Thanks for reply. Good to hear I'm not only one with the Thoracic problem. Like you say, it eases off and returns, but less and less each time....and no big deal compared to previous headaches etc.....just uncomfortable. Again, as with C/S, different sleeping postures seem to either help or worsen depending. I use the sofa when it's bothering me. I'm already very conscious of night time draughts etc, and keeping neck warm using woolly scarfs etc. but will look into the 'buff' issue also. Thanks for that.
I'd never heard of Torticolis before, but have now looked it up. When I first got C/S I had a tilted neck for about 4 weeks, but luckilly it eased off and never returned as bad as that. I guess each of us....different levels etc. I've been looking into the 'mimicked' Thoracic thing as well....interesting because the hands get cold even though there isn't necessarilly any vascular compression as there would be with actual TOS. It poses some intereasting 'how' and 'why' questions about trapped nerve behaviour, which in turn gets my old grey matter stirred up.
Nice to hear, and, because of the wonders of the internet, hope you're still singing !
Gerry
michael_b Gerry_the_neck
Posted
I've been reading your posts with great interest. You say you experienced cervical spondylosis since over 30 years ago. With stiff neck and headache as symptoms.
A question, if you don't mind: did you have them permanently, every day for all these years? A stiff neck for 30 years? Or the symptoms came and went, with times when you had no pain at all?
Thanks.
Gerry_the_neck michael_b
Posted
Sorry for delay replying, been busy elsewhere.
Re your question.....no, the symptoms weren't everyday. There was always some discomfort/stiffness/crackling etc, but mostly the nasty symptoms only kicked in after some aggravation...working overhead, or lifting weight etc. I would say that , on average, it affected me perhaps 60% of the time....took a lot of pain meds to get me through. For me, the worst bit was always cervicogenic headaches and mugginess, because it made other symptoms feel worse. It's an evolving condition, it changes its symptoms and intensities constantly....and that can be really difficult to manage whilsr trying to function 'normally'. A few years ago it clarified into actual trapped nerve symptoms and, although they tend to be more persistent (chronic), they trouble me less because the headachy thing subsided at the same time.
Hope this answers your query somewhat. Also wondering what phase of the condition you are experiencing ?
Gerry
michael_b Gerry_the_neck
Posted
I'm 36 and my problems have started recently, about half a year ago, after an accident. Had XRays and a MRI and it showed slight disc desiccation and some osteophytes, classic manifestations of spondylosis. Mild disc bulge too, unable to tell if it was there long before or it's an aquisition from the accident.
From what you enumerate, I have nearly constant discomfort/stiffness/crackling but no headaches. Often also pain in the neck and right shoulder blade, sometimes spreading to the right arm. The pain and stiffness intensifies as I stay at my computer. I take a walk around the office every few hours, where I move my head as 'naturally' as possible, looking up/down/left/right. Not terribly pleasant to do so but the pain and discomfort usually regress afterwards.
Suffice to say that I'm not terribly enthusiastic of another 30 years of my current or very probably worse symptoms :P
Gerry_the_neck michael_b
Posted
Unfotunately it is a degenerative disease, but that's not to say the symptoms must get worse. THere are cases which gradually become more self manageable with no interference (benign neglect). I'm interested in relief offered by adjusting sleep postures....sleep or nap on a sofa with various pillow supports. Works for me, and keeps me ticking over without the lousy symptoms I used to get. I think that a little experimenting with sleep arrangements can prove beneficial...always bearing in mind that it takes a couple of nights for improvements to kick in. THere's no expense, or waiting for appointments, and you can monitor yourself. If it works, it works. Does for me.
michael_b Gerry_the_neck
Posted
The good thing is that so far, in the morning, when I lay in bed, there's little to no pain. Not so good one is that it kicks in almost immediately after waking up, some days are better and some are worse. If there's a pattern, it seems that bad days are followed by good ones and vice versa. Like if one/several days I'm aching and barely moving, the spine will adjust to some position where it feels less threatened and grants me a few days of lesser pain. Within those days I naturally move with less care and restriction (as normal people do), but this will panic the neck again and place it back to defensive, achy mode.
michael_b Gerry_the_neck
Posted
I just gave it a try, rather reluctantly, and maybe it's my darn disbelief but if anything I'm a bit worse. One of the things with acupuncture it seems is that if it doesn't work, it's morsly your fault for not believing in it.
Gerry_the_neck michael_b
Posted
I tried acupuncture about 20 years ago. No effect noticeable. IMO there's too many variables...operators expertise, subjects willingness, belief etc, to evaluate properly. There's a new acupuncture on the block called 'dry needling' which is used by Physios, and I wouldn't go near it. Might suit some, depending on mentality.
Re: earlier post on pillows. I've found that sleeping horizontally, in bed, can give rise to cyclical symptoms which are difficult to shift. Usually, I'll adjust to sleeping/napping on a sofa for a few days, when necessary, with good pillow support. Seems to break the cycle, sometimes completely gets rid of any stiffness/pain. IT used to take a couple of nights to work, but now I know what positions work best, I can usually ease it down with just a nap or two. Probably a trial/error process for anyone with C/S because the spinal restriction will be different. But worth trying as an experiment. One good result is good for any future reoccurence. Also, with pillows on bed, I think what's important is to find a stable 'comfort zone', where the neck feels less stressed, before falling asleep. For headaches, I use a soft 'cervical ortho pillow' which has raised edges and raised centre piece
michael_b Gerry_the_neck
Posted