Not sure what to do next!

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I am 30 and was diagnosed with the early signs 12 years as time has passed it's just got worse and worse. I am in constant pain with my neck and shoulder I can not lift my arms above my head any more I get severe pain in my back mostly lower and I also get extremely stiff when I sit. I have been taking naproxen for years but it dosent help as much any more. The doctors have tried giving me strong pain killers but with having a full time job and a 3 year old I found it impossible to take them as I can't function on them. I have pleaded with the doctors before to re scan me as I haven't had one since I was 17 as I am sure it's got so much worse than they think it is. Does any one have any advice as to how I can possibly get them to help me and refer me to a consultant again? They keep using the excuse that I am too young to have any other treatment ie surgery sad

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  • Posted

    Hi, I was diagnosed in 2001/2 when I was 31 but also with prolapsed discs after CT & MRI scans. I had the disc at c5/6 removed in 2003. Was also told I had permanent ne'er damage to left side of neck, L arm & hand

    I've attended a pain clinic which was next to useless, but I knew the consultant lead as had previously been seen privately, was advised to try a relatively new drug called Tapentadol (Palexia) as I cannot tolerate opiates. It is a synthetic opiate which comes in slow & instant release. I can take a child's dose without too much bother.

    In 2011 I felt my symptoms deteriorate, pain on right side of neck, R arm & hand as well as more pain on left & L side of face.

    Sadly the pain clinic didn't believe me, but I have a wonderful GP who insisted I had another MRI. Pain clinic then reviewed scans & said nothing was amiss, but I knew otherwise. Went to see surgeon privately in 2012 for his opinion, who instantly said I needed an urgent op to remove c6/7, & he put me on his NHS list, within three months op was done framework implanted & home next day.

    If you feel things are worse you have to tell your GP, don't get fobbed off, you know your body better than anyone. If you feel you need backup take someone with you, have a list of all new symptoms.

    Is there anyway you could afford an initial consultation privately?

    Surgery doesn't have to be the only option, have you tried Botox injections in your back/neck? I've found they gave up to 12 wks relief but I couldn't get them on the NHS at the time.

    Tens machines might also help.

    I also have some compression shirts that were designed with help from a Physio and have made my life worth living again.

    I was very hesitant about surgery in 2003 & 2012, it's not cured me & won't do but has stopped those symptoms getting worse - that was until I slipped c1/2!!!

    Massage helps as does a sauna & gentle swim, using snorkel and fins, I don't use my arms.

    Hope this hasn't been too gloom and doom, if you need more info just yell

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  • Posted

    Thank you for replying I was actually just looking at the costs for private and unfortunately I can't afford it as am a single mum so counting the pennies. I was with the pain clinic for around 2 years and they were also useless just kept saying try this drug etc I have had physio several times but due to the appointments being months apart they had no direct help sad I have found massage to be by far the best pain relief shame I can't afford a daily one. I am literally going to have to beg my doctor to help me I can't cope with the pain any more I feel 90 at the moment. I shall mention the drug you mentioned as well thank you again smile
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  • Posted

    Yes trying to fund privately is tough, buy you shouldn't have to do it. Make it clear you know something has changed. I hope an half decent GP would far rather you get seen by a consultant instead of going to them.

    My bridges are well and truly burnt with the pain clinic, but GP know I don't Make it up ( probably something to do with me begging for my head to be pulled of - she says she can't to that as it would cause too much paperwork smile ) she now insists on seeing me regularly to we can work out a pain management path. I know she can't help, but sometime 10 mins to get my frustration out makes a whole lot of difference.

    Just don't give up,

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  • Posted

    In order for me to get an appointment with an orthopaedic specialist, I had to tell the GP Surgery that I would contact my local MP. It did the trick!! Contact your MP if they do not get you an appointment; that's what we pay them all for! Be assertive and smile; do not be aggressive! I am now waiting to see a Neurologist (mid-March after a 3.5 month wait) re: further problems, which now look to be Fibromyalgia. Going private was not an option as there are too few neurologists apparently and it would not have shortened the waiting time at all. I may have got Fibromyalgia due to the trauma of my original neck injury. As if Spondylosis is not bad enough eh? I was able to work with the Spondylosis, but the FM is making it impossible and I will probably be finished due to medical capability. Yet I am not ill enough to get disability benefits; FM is classed as a disability - so go figure?? The irony eh? I will have to sign on for job seekers. The Tories have really done a great job with welfare benefits - NOT!!

    GOOD LUCK!!

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  • Posted

    There seems to be a persistent trend with people not being referred on for this condition, iv had symptoms since last June after a fall & asked my GP to refer me to a neurosurgeon in January - I was suicidal with the pain

    I was prepared to pay - she said "can you not wait while April?"

    What does this tell you?

    The local PCTs are maxed out in some areas for funds for chronic pain.

    She nearly choked when I said I knew this & she instantly referred me to the pain clinic.

    Last week I have had a spinal epidural - the relief from the neuropathic pain is just amazing.

    It hasn't got rid of the neck & shoulder stiffness - but I am able to think rationally for the first time in 9 months.

    Also - "choose & book" just a little tip, if your doctor offers you this - you can refuse & can ask to be referred to the specialist of your choice, I work in the NHS. & never knew this !!!

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  • Posted

    Thank you all for your replies its greatly appreciated and at least now I know I aren't the only one in this boat! I have made an appointment with my doctor tonight so fingers crossed I can get a referral!
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  • Posted

    patricia45838

    24 February 2014 at 05:42AM

    Also - "choose & book" just a little tip, if your doctor offers you this - you can refuse & can ask to be referred to the specialist of your choice, I work in the NHS. & never knew this !!!

    Hi patricia - sorry but I am not understanding the above; can you explain in more detail (example?).

    Thanks.

    It is a minefield out there. No one seems to get any specific treatment/advice/help for Spondylosis. The NHS really must be in crisis as evidenced by what's going on in the area of chronic pain and illness. The best 'treatment' for me to date, has been not working in a stressful environment for the last 4 months; that has been the only time I have had to really rest my neck for any decent length of time. I am actually having days when I don't know I have a problem and the flare-ups are certainly not as often. Stress is a no-no with this condition.

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  • Posted

    lucy88022

    24 February 2014 at 09:04AM

    REMEMBER lucy!!

    If the GP tries to obfuscate and 'shine you on' in terms of getting to see a specialist. You immediately tell them you will contact your local MP. Might be an idea to find out who your MP is beforehand if you don't already know. Be assertive but NOT AGGRESSIVE.

    BEST OF LUCK AND LET US KNOW OUTCOME xx

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  • Posted

    Hi all, thanks again for your replies. I saw the doctor and he is the first doctor that has been willing to listen and help me! He is new to my practise so I have never seen him before. Having told him my symptoms he thinks I may have fibromyalgia and that he will want to refer to a specialist. He wants me to go back and see him next week as he wants to talk to another doctor about me and then decide on the best way to go. He couldn't believe that no other doctor had come to the conclusion it may be fibromyalgia as all of my symptoms point to it. I have looked it up on the internet and it is pretty much spot on for the symptoms. Shame there is not really much they can do for it though. Just really glad the doctor listened to me and fingers crossed I get my referral!

    Thanks again everyone your help is really appreciated and I don't feel quite as alone with this condition now smile

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  • Posted

    Good Luck.

    I look to have FM too (see my post of 24th Feb.).

    I have just joined the FM (Fibromyalgia) forum on here. Looks to be a lot of sufferers, so we are not alone. Keep me posted please re: what 'specialist' they refer you to. I am seeing a Neurologist but someone did mention that a Rheumatologist might have been better??

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  • Posted

    They did mention a Rheumatologist so I am guessing that's who I will be referred to. I may join the FM group as well smile

    Thanks again x

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