The future is looking grey at the moment

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YorkshireLass
YorkshireLass Member Posts: 60
edited 26. Feb 2015, 02:15 in Living with Arthritis archive
I was diagnosed with CS about 8 years ago in C5 & C6, this was probably down to an injury I sustained about 25+ years ago. To be honest the pain hasn't been too bad and I thought I was getting away with it compared to other sufferers.

About 18 months ago I started with a pain in my neck that is constant and I saw at least 3 GPs and they shrugged their shoulders and said, go for some physio and it'll go away. Well I did and it didn't and eventually 2 weeks ago I screamed at another GP and he referred me for an MRI.

Got my results on Friday and C4 is now involved, I have a bulging disc and a straightening of the spine at the top (not sure what the technical term is). I knew something wasn't right but as usual the GPs haven't got a clue and don't really care. He told me there is no cure, which obviously I knew, but didn't suggest anything to help me. The pain in the right hand side of my neck is, I suppose, referred pain from the CS, but the stiffness I get now is terrible, I can't tip my head back and when I lean forward I get terrible pain trying to straighten up again. I am 47 and in theory could only be halfway through my life, the thought of living with this for the rest of my life is pretty depressing and presumably it will only get worse if it has over the last 8 years.

I also suffer from migraines which of course the CS makes them more frequent. I just don't know where to turn next, the GP has more or less said go away and live the rest of your life the best way you can.

I have a very supportive husband who does help, but we both have own business so I work fulltime and there is no possibility of me giving work up, not that I'd want to and to be honest I'm better at work as I'm more mobile and not thinking about it as much.

Is there any light at the end of tunnel, does anyone find they have times of remission or is it going to be permanent pain 24/7?? :cry:

I've tried physio but it makes it worse and I'm frightened they are going to do more damage.

Thanks YL

Comments

  • stickywicket
    stickywicket Member Posts: 27,730
    edited 30. Nov -1, 00:00
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    This must be very hard to deal with. My troubles generally stay clear of my back though my neck certainly doesn't go backwards and not much to the sides either.

    GPs can do very little for any form of arthritis. They refer us auto-immuners to rheumatologists and prescribe physio and pain relief for OA until / unless surgery becomes necessary. From what I've read on here it would appear that surgery to the neck area is usually only performed to prevent things getting worse rather than to effect any improvement.

    I'm sorry, I don't know what the answer is. You say “there is no possibility of me giving work up, “ and, provided it's not making it worse, there's no reason why you should but, at the end of the day, arthritis totally ignores such statements and does what it will. We are the ones who have to adjust as arthritis won't.

    Owing to my neck problems I can get migrainy headaches if I don't use a shaped memory foam pillow. I use that wherever I go and I do neck exercises daily. I'm sorry I can't suggest anything else.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • YorkshireLass
    YorkshireLass Member Posts: 60
    edited 30. Nov -1, 00:00
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    Thanks for your reply SW, I think it's because I've been going through such a bad time at present and it's taken 18 months of nagging to get my GP to refer me for the MRI. I'm more annoyed with them than I am the CS to be honest. They knew I was already a sufferer but they didn't think that it could be connected??

    We know our bodies more than anyone else and I knew something wasn't right why do you have to scream and shout before you get anything done nowadays??

    I think I just need a few kind words from people who know what it's like and know what I'm going through, aswell as 1000s of others.

    YL
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Is CS cervical spondylosis? I fear I should know but today life is a bit of a muddle thanks to other stuff that's going on.

    GPs know a little about a lot which sometimes doesn't help us. Truth be told there is not a great deal to be done about any form of arthritis, as Sticky said we have to adjust to the demands of the disease, as we have to with any other demands of life. Any kind is degenerative and progressive but we each vary in how we are affected and in how rapidly. Mine kicked off when I was 37, two years after I began my own little business as a mobile tutor for dyslexics. Four years in the mobile bit went (in more than one way :wink: ) so I changed to working from home. That finally finished at the end of 2011, when I was 52 and I am thankful I found the courage to say enough.

    Of course your world is currently grey - we have a life-plan all mapped out and then our bodies let us down. It is not easy to accept, it is not easy to live with, it is not easy to adapt but we have to learn to do all three things so that the beast does not defeat us. We have to find our own ways and coping strategies and developing those takes time. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • YorkshireLass
    YorkshireLass Member Posts: 60
    edited 30. Nov -1, 00:00
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    Hi DD
    Yes CS is cervical spondylosis, I find it easier than spelling it out in full :roll:

    I suppose I just need to adjust, things always seem worse at the beginning and I don't have a choice but to live with it. Bit like the migraines I've had for 40+ years, I've tried every treatment and every drug on the market and I've resigned myself to live with them, I had a real scare with a prophylactic drug I was taking last year that nearly killed me, yet again because the GPs didn't listen to me or take note of my symptoms, so I'm really wary about taking anything ever again.

    Thanks for your kind words

    YL
  • stickywicket
    stickywicket Member Posts: 27,730
    edited 30. Nov -1, 00:00
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    I think it's no bad thing to be wary of taking meds but sometimes we have to.

    I also think GPs can seem offhand about any form of OA because there is so little they can do about it and I guess they prefer curing people. Yes, you got your MRI but what good has it done? Nothing changes unless surgery is advised. It's a harsh world.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Slosh
    Slosh Member Posts: 3,194
    edited 30. Nov -1, 00:00
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    I have cervical spondylosis, C5,6 and 7 so I know about the pain, and also had two prolapsed discs in between the affected vertebrae. However in my case the pain was/is not confined to my neck, but as there is pressure on my spinal cord and nerve as well as the neck pain I also have severe nerve pain across my shoulders and down my arms as well as some muscle weakness in my left shoulder and arm. Mine came out of the blue.
    I was on strong painkillers, initially Naproxen, codydramol and amitriptaline (for the nerve pain). However due to the impact on my spinal cord and nerve I was referred to a specialist, initially for a painkilling injection into the neck, but ultimately due to the fact my problems were getting worse I had to have surgery, the two discs were removed and the vertebrae fused.

    However the operation is complex, left me with a throat problem and fairly constant pins and needles in my left hand and still with the pain, I was told that it isn't to make things better but to stop them getting worse! Plus as the vertebrae are fused even after physio I have reduced movement in my neck.

    The only reason I was reffered on was because of the impact on my spinal cord and nerve, and a year on I remain on very strong painkillers.

    I've said this not to scare you or belittle the pain and discomfort you're in, I really sympathise, but to explain why you have not been offered anything else.

    In terms of practical support, I find a hot wheat pack helps, I sleep on a specially shaped pillow to keep my neck straight. I know that there is evidence that Tens machines can help to reduce pain but due to my fusion I can't use one. It's important to try and keep moving the neck, hence the physio as otherwise lack of moving it makes the problem worse as the muscles stiffen up and weaken, it is painful, but important and a physio won't ask you to do anything that could make things worse. I still have to do mine daily to keep what movement I have, even though I have another disc that has popped out! things like high backed chairs can really help. I was also advised to keep my neck in a neutral position as much as possible. I think the worst part is not being able to take your head off your neck to rest it! .Something else that might help is a neck pillow

    Good luck, and I hope it doesn't get worse, has your GP prescribed an anti-inflammatory drug?
    He did not say you will not be storm tossed, you will not be sore distressed, you will not be work weary. He said you will not be overcome.
    Julian of Norwich
  • YorkshireLass
    YorkshireLass Member Posts: 60
    edited 30. Nov -1, 00:00
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    Thanks for your reply Slosh, the more I read the more I realise there are so many people worse off than me, I'm so sorry you've been through so much.

    I have an electric heat pad which I use of an evening and I do have a TENS machine, but not used it for this problem, maybe I'll start. The GP didn't prescribe anything, neither pain killers or anti-inflammatories so I'm fumbling around on my own. That's why I came on here to seek advice.

    I'll just take each day as it comes and manage it as best I can.

    YL
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Other people being 'worse off' is neither here nor there: this is your pain, your trouble and it's having a huge impact on the quality of your life. You are well within your rights to ask him / her for something but it would appear that your relationship with this GP is not of the best. Is there another doctor you could see within the practice, or maybe join another practice altogether in the hope of finding a more receptive doctor. Over-the-counter pain relief may not be sufficient but have you tried anything in the past? Migraine is a ghastly condition - I don't know if this could be affected by your taking something for the other pain. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Slosh
    Slosh Member Posts: 3,194
    edited 30. Nov -1, 00:00
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    I just wanted to echo what DD has said, I mainly wanted to explain why you had not been offered a surgical remedy straight off. With anything like this a supportive GP is vital, I am lucky in that I have that, plus a good back up if my usual GP is away. I would suggest as she does trying another one within the practice or changing surgeries and then discussing pain relief options. Neckpain is horrible, it's not a part of the body you can easily rest or take the weight off of. Are you still seeing a physio? If so chat to them about the exercises, they may need to be modified, but are likely to be painful at first at least but it is important to persevere with them as otherwise the stiffness and pain will get worse. A physio can also advise on positioning the tens pads.
    He did not say you will not be storm tossed, you will not be sore distressed, you will not be work weary. He said you will not be overcome.
    Julian of Norwich
  • YorkshireLass
    YorkshireLass Member Posts: 60
    edited 30. Nov -1, 00:00
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    Thank you DD & Slosh

    I have no faith whatsoever in th GPs in our surgery, the one I am seeing at the moment is a different one to the usual GPs I see.

    As I mentioned in an earlier post, last year I was suffering from symptoms, a sore throat, and I went to see 3 different doctors because I was so concerned, I didn't connect the symptoms with the drug I was taking for my migraines at first, but after about 6 weeks the penny dropped. Every one of the doctors more or less told me it was nothing and to stop wasting their time. People don't have sore throats for nothing. In the end I paid out my £100 to see my neuro surgeon at the Nuffield and he instantly demanded I came off the drug as I was showing symptoms for Stephen Johnson syndrome, which can be fatal. Not ONE of my regular GPs noticed this could be the case, they all knew what drug I was taking but didn't think to check the side effects. I also mentioned to these aforementioned doctors about my increase in pain in my neck because it was different to the usual pain and in a different place and I was concerned it was something more sinister and they all shrugged their shoulders and didn't suggest anything.
    This is why I saw a 4th GP about the pain and he suggested the MRI and the results show it is worse, but now it looks as though he doesn't give a monkey's either. I don't really want to be changing practices because the next one could be worse, but there again they can't be worse than the shower that is there now.

    I have tried physio but find it really painful afterwards and not sure if it's worth going through all that.
    When I was first diagnosed 8ish years ago it was a consultant at the Nuffield who also runs a pain clinic and did say I coud go there should things get worse and to be honest I think that is the way to go at the moment.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    As I said, GPs know a little about a lot, in fact about a huge amount of things. If I was having a constant sore throat the first thing I would do would be to check the side-effects leaflet that comes with every med I take, I wouldn't expect my GP to do such a basic thing (let alone remember what possible side effects of every med could be). They can only do so much to help and with your form of arthritis their options are very limited. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Slosh
    Slosh Member Posts: 3,194
    edited 30. Nov -1, 00:00
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    I must admit I always read the leaflets that come with my meds, as I agree with DD that we can't expect GPs to be all knowing. I know it is (literally) a pain in the neck but please try and keep going with the exercises, the less you move your neck, the more it will stiffen up and the more painful it will become as the muscles weaken and the ligaments tighten. Are you still seeing the physio? If so talk to her/him for advice as the exercises may need to be modified and if not request a new referral. My physio also gave me some deep tissue massage for my neck and shoulders which although painful did help. I still have to do mine regularly on a daily basis as otherwise my neck stiffens up quickly and gets more painful.

    With the medicines you are on for your migrane are they contraindicated against painkillers or anti-infinflammatory drugs? This could be why you have not been prescribed anything but your GP should have explained this. They may cautious after your previous problems.
    He did not say you will not be storm tossed, you will not be sore distressed, you will not be work weary. He said you will not be overcome.
    Julian of Norwich
  • YorkshireLass
    YorkshireLass Member Posts: 60
    edited 30. Nov -1, 00:00
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    Slosh
    I did read the side effects leaflet like I always do and there were about a 100+, it was me that put 2 + 2 together in the end and that is why I went back to my neuro because the GPs couldn't be bothered to even check what medication, if any, I was taking. They should have checked my notes first, as I said people don't get sore throats for no reason.

    I stopped seeing the physio after about 4 months, my neuro recommended deep tissue massage and the pain afterwards was unbearable.
    At the moment I'm not taking any prophylactics for the migraine because nothing works and after my recent scare I'm thinking I'll just put up with them as I have the last 35 years. I'm fed up with puming my body with drugs for no reason. If I have to take anything I want to make sure it's going to work. The last GP doesn't even know about the incident with the drugs he just didn't bother to suggest anything.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    I think all of us struggle from time to time with the fact that there is very little to be done about our conditions, in this day and age that seems incredible. When I'm waiting in rheumatology I see younger people than me striding in and out of their appointments with the greatest of ease, not a stick in sight. They are benefitting from advances in medical training and knowledge but are probably resentful about their treatment - most people are.

    Our lives are far from easy, I think we all agree about that. How we go about living them is far harder to quantify. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 27,730
    edited 30. Nov -1, 00:00
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    Reading back over your thread what stands out is your very low opinion of all the GPs you've seen in your practice so, again, I'd suggest you change to a different practice as a good GP relationship makes such a difference.

    Having said that, I'm not sure what they can do. Surgery doesn't seem to be required yet (which is good) and you don't want physio. There are options such as meditation, pilates (maybe) etc which a Pain Clinic could help with but, other than these, it's probably just a matter of tinkering with whatever pain relief you take.

    Migraines, too, are still much of a mystery and it's unfortunate that you're landed with two incurable diseases in an age when people's expectations of medicine are high. You are not alone. Many of us on here juggle with several (and their respective meds) and it's not a barrel of laughs but, hey ho, that's life. We have to tackle it from where we are not from where we'd like to be.

    To be brutally honest, I don't think either the migraines or the arthritis are going to change much for the better. The only two things which you can change in all this are (i)your GP and (ii)your expectations. I hope you can, somehow, manage to find an easier way to live with it all.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • YorkshireLass
    YorkshireLass Member Posts: 60
    edited 30. Nov -1, 00:00
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    Thanks SW
    I think I'll just take each day as it comes and deal with it like I have all my life. I have a justified low opinion of the GPs, but if I was to move what guarantees are there that they are any better??

    I have considered a pain clinic which I will do when it gets too bad and possibly yoga or pilates.
    I know things will never get better or go away that's life, thanks for your time x
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
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    Hello YL
    Sorry to hear you are struggling like this, but glad to see you asked for the MRI..we are often scared of asking our GPs for xrays and things..I did the same a few years ago ..if we dont shout then we are not heard..is there no way you could change GPs ...I know in this day and age not always possible...I would say keep that neck moving or it will fuse...Yoga and pilates are very good for this sort of thing...do your home work on the op you can have in the future ..and don't forget they always have to tell you the downsides ...the pain clinic is worth a go..there are quite a few meds that could help...
    Love
    Barbara
  • YorkshireLass
    YorkshireLass Member Posts: 60
    edited 30. Nov -1, 00:00
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    Thanks Barbara
    I find I am worse at home because I'm not as mobile as being at work, so the exercises are definite must do, I will have to get into some sort of routine :)

    I could try to find another GP but it's so much hassle isn't it and as I said what if they are no better??....I'll have to ask around to see if I can get some decent recommendations.

    YL
  • stickywicket
    stickywicket Member Posts: 27,730
    edited 30. Nov -1, 00:00
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    I could try to find another GP but it's so much hassle isn't it

    It's actually no hassle at all. Several people on here have done it are pleased they have. You simply go to the surgery you want to join and ask. They do the rest. http://www.nhs.uk/chq/Pages/1088.aspx?CategoryID=68&SubCategoryID=158 Although there will still be very little they can do it would be a new start and you'd be singularly unlucky to find no-one congenial there either.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Slosh
    Slosh Member Posts: 3,194
    edited 30. Nov -1, 00:00
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    Yoga and pilates should help, but it's important to keep going with the physio exercises as much as possible as the less you move your neck the worse the stiffness and pain will get. A lot of GP practices now have websites on which patients can post reviews etc so that may be helpful.

    Hopefully you won't need an operation, as I said it is a last resort option and not a "cure" as such.

    One last thing ring the helpline and ask them for a copy of their booklet on neck pain, and if you go on the arthritis research site there is useful information there too.
    He did not say you will not be storm tossed, you will not be sore distressed, you will not be work weary. He said you will not be overcome.
    Julian of Norwich
  • YorkshireLass
    YorkshireLass Member Posts: 60
    edited 30. Nov -1, 00:00
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    Thanks for your advice Sticky & Slosh :)