CS pain all over

Welcome to the forum. I've only been here since July but, like you, have found the comments of others to be most helpful. I cannot say whether all of the symptoms you're experiencing are related to CS. But the neck and lower back pain are very familiar to me. I also found that Amitriptilene didn't help. I would like to offer you some constructive advice but would ask some questions first. You say that you had controllable pains over Christmas but you were in agony as soon as you went back to work. What did you do differently over Christmas compared to a work day? Were you more active or less active? You also ask why the condition is worse when seated. Does the condition worsen immediately you sit down or after you have been seated for some time? I find having a bath can make me feel better, at least temporarily. But it never makes me feel worse although I do have problems holding the shower attachment to wash my hair. Do you find that holding or reaching for items is a problem (e.g. soap, shampoo)? Do you have similar trouble holding, say, a pen or a telephone for more than a few minutes? Sorry to be so nosey. But, hopefully, I may be able to help you in some way. Please don't hesitate to send me a private message if you'd rather not post a reply here. Look forward to hearing from you.

Thanks for your reply, I didn't really go to deep into my discomforts and pains because my discussion was so long and I didn't want to bore everyone to death.

I seem to be lucky compared to a lot of other sufferers on this site in the way that, if I am lying down i.e in bed or on the floor I do not get any pains at all. I wake every morning and it is as if there was nothing wrong at all, however, sometime within 30 minutes to 3 hours later my neck pain will be back. My symptoms have varied all year long but have now seemed to become more predictable. At the moment my mother is ill in hospital after suffering a massive stroke and over Xmas and today I have spent many hours stood up at her bedside and although my neck pains and chest pains are apparent, they are bearable and after a few wiggles and stretches I can keep them at bay. However, as soon as I sit down in the car to drive the 1 hour journey home they come back with a vengance. Today it started with a slight stabbing/muscle pull or tear feeling in my stomach followed by the pains in my neck just above the shoulder line.

With reference to what I do diferently at work to home, the answer is sitting down in a chair in front of my PC, at home I can lounge across the sofa and get a comfortable position, at work I sit at the PC in the \"correct\" posture and my neck starts to hurt. On Mondays the pain will gradually start and worsen through the day and by Thursday I am usually totally uncomfortable from the minute I get to work and this pain will stay all night until I lay down again.

With reference to the bath, the pains will be there whilst sitting in the bath but when I get out I start to feel unwell, something similar to when you have a bath which is too hot, i.e Light headed and nauseous. This feeling is there if I have a long hot soak, a short soak or a quick splash in a cool bath, so it is nothing to with the water heat. I ride my cycle to work and have a shower every morning at work and have no such feelings, in fact hot or cold on my neck brings instant relief for the time that they are in contact, the pain returns shortly after removal.

I get no apparent loss of strength or pains in my arms when lifting unless I am carrying shopping for a period of time and then it is only minor. I usually suffer for 1 or 2 days after a shopping spree but not during. The only discomfort during shopping is in my lower back and in my wallet!!! I had the oppotunity in August last year to do a manual (as opposed to administrative) job with the company for a four week period. I had no problems lifting heavy stuff around and standing on my feet all day, in fact my neck was bearable for most of the time, when I returned to my normal job in front of the PC, I soon reverted to my neck pains. My main concern during the 4 weeks manual work was a general feeling of being \"unwell\" (as previously described) in the evenings. As an added \"cause\", I spent 23 years in the armed forces as a mechanic with not a single ailment, I now spend 8/9 hours a day in front of a PC.

I read your reply to my message with great interest as there are some similarities with my experience. The greatest similarity is that your symptoms worsen the more you do; for instance, you say that, at work on Monday, the pain will start gradually and worsen during the day but, by Thursday, the discomfort is virtually instant (and, perhaps, stronger). It strikes me that your symptoms appear when you’re using your hands, arms or neck, perhaps more so when you’re grasping something such as a steering wheel, computer mouse or even a towel to dry yourself after a bath or shower. At work, presumably you’re using a computer keyboard and mouse for most of the day. Therefore, you’re constantly moving your hands and arms. Probably without realising it, you’re also moving your neck a great deal to look at items on the desk in front of you, to look up at people elsewhere in the room, etc. The more you do this over the course of the week, the worse you feel. Over Christmas, you weren’t really doing this to the same extent so, consequently, you felt somewhat easier. When driving back from the hospital, you’re gripping the steering wheel and changing gears and continually moving your head to keep an eye on other motorists.

When you say that the neck pain starts sometime within 30 minutes to 3 hours after getting up, does the onset of the pain tend to occur more quickly later in the week? It may be 3 hours on Monday but only 30 minutes by Friday. If so, that suggests to me that your activities at work (and, perhaps, getting to/from work) are aggravating the condition as the week progresses.

I too can find great comfort in a bath but burning sensations appear afterwards when drying myself, dressing and making something to eat. Your description here of feeling lightheaded sounds uncannily familiar as does your shopping experience: an increasing burning sensation in the lower back (at the base of the spine) which hangs around for some time afterwards. In my case, the burning sensations are also present when I wake up and can make it difficult to get out of bed. To an extent, I’ve learned to adapt to the condition but it can still surprise me. As you’ve probably worked out from reading this forum, there is no quick fix solution. The only advice I can give you is to adapt your daily life to suit the condition which I realise (and know, from bitter experience) is easier said than done.

Finally, does your employer know what you’re experiencing? It may sound like a drastic step but, if you worked fewer hours, that may improve matters although it would probably damage your bank balance. Anyhow, if you want to talk more about it, don’t hesitate to write. I’ll keep an eye open for future messages on this board from you or send me a private message, if you prefer. In the meantime, look after yourself.

hi, everyone, after all the time i have been on here i havent heard a sufferer discuss something so near to my own problems. i didnt realise that lower back pain was anything to do with my cs. i assumed it was another version of it such as as. the feeling when you come out of the bath is very similar to my experience when i come out of the shower, i thought that letting warm water run onto my neck would help, but i experience such fogginess and extra pain i dont know what to do with myself. my lower back pain is such that it is there when i wake up and it really hurts to move, if i sit for any length of time i cant stand up and feel really foolish, which i know isnt my fault but , what can you do, i am waiting yet again to be referred to see another consultant, i guess i will be fobbed off yet again. thanks for your insights, it was good to know what i am going through isnt unique.

hi all, i oftem read this site and today i decided to write something.i was diagnosed with cs two years ago. im 46 and last year was my worst for pain.its there daily now and in a lot of different places. head,shoulders,lower back. my doctor says it gets worse and ive got to live with it. it got bad very quickley! my mother got it at 46 and was told she couldnt work any more. im going back to doctor and hopefully this time he will refer me . im sure it will show up on xray that my bones have worsened? i often feel sick and light headed especially when walking or sitting with my head down. has anyone else been told they cant work with cs? im ready to throw towel in. its lovely to read all your letters. it helps to know someone else understands. thanks for listening and lets keep smiling

[quote:002dcb40ea=\"leocat\"]hi all, i oftem read this site and today i decided to write something.i was diagnosed with cs two years ago. im 46 and last year was my worst for pain.its there daily now and in a lot of different places. head,shoulders,lower back. my doctor says it gets worse and ive got to live with it. it got bad very quickley! my mother got it at 46 and was told she couldnt work any more. im going back to doctor and hopefully this time he will refer me . im sure it will show up on xray that my bones have worsened? i often feel sick and light headed especially when walking or sitting with my head down. has anyone else been told they cant work with cs? im ready to throw towel in. its lovely to read all your letters. it helps to know someone else understands. thanks for listening and lets keep smiling[/quote:002dcb40ea]

Hiya Leocat

Would just like to empathize with you, re the pain all over, as cs is basically degenerative osteoarthritis I would hazard a guess that the little beastie gets fed up in one place and likes to make it's self known elsewhwere, Grrrrrr, it isn't nice at all and very frustrating!!

Please ask your gp to refer you to a rheumatologist who should get some MRI scans done etc, do you have anyprivate medical insurance? This would be useful for getting a private referral. If not the cost is about £150 for a consultation.

I have been unable to work for about 15 years with lumbar spondylosis and prolapsed discs due to and injury whilst working, however there is no way I could work with CS.

Hope this helps take care, be gentle with yourself and keep smiling

Emxx :wink:

Aunty Em, I agree with you that the little beastie gets fed up in one place and finds somewhere else to go. At the moment, my left knee is complaining like mad. Although this is not a totally new symptom, it's not that common and is joining forces with the usual burning sensations which I experience in my neck, lower back and upper right arm. I am due to go to hospital tomorrow for a cervical epidural but the weather here in suburban Hertfordshire is truly atrocious today. It looks as if I may have to cancel the appointment.

Leocat, make sure you get referred to someone who can help you more. I know from bitter experience that doctors can be slow to act but you should insist on having a MRI scan, preferably of your whole body, even if you have to make a nuisance of yourself. Your symptoms sound incredibly similar to my own and an MRI scan of my neck last year showed severe degeneration. However, I am meeting resistance to having a scan of my lower back where I have been suffering intermittent pain since at least the early 1970s.

As for work, I cannot imagine what I could do as any sustained activity is, literally, a pain the neck. Unfortunately, we're all pretty much in the same boat. My best wishes to you, Leocat, and please stay in touch with us on this forum. I would be genuinely interested to know how you get on.

I started with neck and arm pain in my early twenties. Went to the doctor who told me I was \"far too young for reumatism\". I am now 52 and have suffered constantly - despite several referrals to my local hospital were the \"specialist \" has just fobbed me off. I have spent thousands of pounds on private treatments over the years which releaves the problem for a while but then it comes back.

Treatment for long term pain in the UK is appalling and when you keep returning to the GP you get treated as if you are some sort of depressive moron. I no longer go to my GP but just live off painkillers and supplements I am quite sure that if I was some famous footballler or sports personality or royalty my problem would have been dealt with correctly years ago.

I have found though that taking both amino acids, fish oils and Glucosamine helps though they need to be taken togather. I have tried just one on its own but neck pain come back. It is expensive to take all three but it does help.

Hello my fellow sufferers of CS - I feel sorry for us all, because people dont seem to understand our condition including some doctors- i've been a sufferer for eight years now and when I first started to get the symptoms - I thought that I was dying!! It took years before I was finally diagnosed as having CS and that was after numerous visits to the hospitals to see various experts and finally after having two MIR scans the condition was diagnosed. I've now been told by my doctore that I have severe spondylosis.

My symptoms are:

Pain at the back of the head - pain down my right side of my neck - pain in both of my shoulders - pain in both my arms - pain in my middle back -

and I used to have pain across my chest but thats gone now. I also have a myclonic condition [ muscle spasms] other symptoms that people may not know about - that I get , are dizzy spells - ringing in my ears - I also have muscle weakness in both my arms and numbness in my hands and sometimes my arms. The only pain killer that I found to have any benefit is TRAMADOL but pain killers will only work if i'm resting, as soon as I'm mobile the pain will generate all through my body.

I worked as long as I was able - but it became all too much for me - so I had to apply for incapacity benefit - which I received long term.

I'm now applying for disability benefit - but Ive found this process to be flawed - biased and very unfair - the decision makers only take notice of their provided doctors - little notice is taken of your own GP - and there are questions in the medicals that are set as traps to try and catch out the customers [ as they call us] one such question is: can you walk to the shops for 10 minutes - if you're answer is yes, then you would stand no hope of getting disabiliy mobility allowance - you wont get this benefit even it the doctor says that in his opinion \"you're only able to walk 200 metres slowly and with a few brief halts\" It appears to me that the DWP dont take sufferers of CS very seriously. I'm at the moment waiting for a tribunal - I believe that there is a way of getting these benefits that they keep telling us that were not claiming - if you want to know what you should be putting down on your claims form to the DWP : just reply and I'll tell you.because there is one question that will have them beat.

if anybody is interested in the procedure of applying for incapacity benefit

or Disability benefit and want some help - please respond to this - and i'lll gladly be happy to tell you. it's about time we fought for our rights.

I have recently been diagnose with CS and will be seeing a consultant for the first time on Saturday. I have in the last few weeks been feeling really quite ok that is until this weekend when my neck started to hurt and my left shoulder has become painful and swollen again. Today however I have pain in so many places, including my ribs, lower back, head and my elbow joints are very swollen and I feel ill, light headed and dizzy. I feel so bad I am wondering if I have a virus that is attacking all the weak areas in my body, or is this in fact due to the CS? If that is the case why are all these things happening because of a problem in my neck?

I really need some help please to try and make sense of all of this and also when I do see my consultant on Saturday I am better informed. Thanks in anticipation.

Unfortunately, Little Bear, the nature of CS is that you have a bewildering array of symptoms, any or none of which can be present at any given time. You will have periods when you feel relatively OK and other times when you wonder what on earth is happening to you. The lightheaded feeling and dizziness are familiar to me too. Let me know how you get on with the specialist on Saturday. Hopefully, he/she will send you for an MRI scan but you may well be referred to a physiotherapist or even be put on a course of painkillers.

HI everyone

iam going through a bad time at the moment i was interested to hear peoples descriptions of what is similar to mine,

i workout 4 days per week and have done so this last 25 yrs,

my symptoms resemble what i have read on here!i

SYMPTOMS are: chest pain on activity also neck pain, what happens is my sternum will start to ache as well has my neck, the pain is scary, also i feel lightheaded! and a slight feeling of nausea, followed by an headache, i have also noticed my neck grinds when i turn it, movement seems restricted.

this is alot worse at the gym \"after exercise\"

i have been to AE dozens of times thinking iam about to have an heart attack all seems normal oh yes i have noticed that when i lean forward sitting! is that my left arm aches and my fingers go numb, then if i stand and place my arm behind my back all returns to mormal.

i hVE a feeling its to do with my neck. although docs havent looked into my neck. they have mentioned i may have costochondritus \" imflamation of the sternum. after reading your views ect i think it may be CS.

i now have developed panic attacks which to be honest are destroying me

hello tellboy, well i dont go to the gym i couldnt if i wanted to. my problems include my ribs hurting like nothing else, it is from my sternum to the bottom of my ribs, i liken it too a really bad chest infection. i also have pains in my clavicle, which sets off my shoulder pain, which then dominoes into my neck and headaches follow whic knock me off my feet for about 24hrs. i also have pains that radiate down my right arm mainly , into my fingers. i do have cs and have for alomost 19yrs now,try and getyour gp to send you for a mri, that will show if you have cs or not,,,, good luck xx chris