It's all awful

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    Warning long moan coming

    I’ve had 3 cervical disc surgeries over the past 10 years the last one Feb 2018 and now my latest mri shows bulges above and below plus problems where I’ve already had surgery so waiting to see neurosurgeons again

    Suddenly 3 weeks ago I developed difficulty swallowing and lost my voice so now seeing ENT next week I am also waking up choking on saliva so sleep not great

    My right shoulder has had nerve pain from neck for a long time but I now have bursitis and impingment (confirmed by ultrasound) and limited movement

    I had my first greater occipital nerve block for occipital neuralgia 2 weeks ago and it’s done nothing but with everything else that’s happening maybe not surprising also I think perhaps my neck is the cause of the occipital neuralgia so unlikely nerve block will help

    So put all this together with my recent forced retirement on ill health (August) and i am incredibly low the pain is awful and that’s without mentioning the lower back pain or knee pain.
    I just can’t take anymore the pain is exhausting and today I have my ESA appointment at the job centre I can hardly speak I’m in so much pain I just want to cry. I eventually applied for PIP a month ago who knows when I will hear from them and so much has changed for the worse since I applied

    My husband is really helpful but still makes stupid remarks at times
    “I think you just like visiting hospitals”
    “Think positively”
    “You should make an effort to do more”
    To name just a few

    The more I try to talk the harder it is to swallow so no calling or visiting

    So moan over and thank you lovely people if you managed to read to the end


    Oh dear you are struggling aren’t you. Husbands comments are the same as mine but they aren’t suffering the agony so don’t understand. My problem is lumbar and surgery my only option to reduce not get rid of pain. I’m recently getting terrible neck crepitus so need to mention that when I go to see consultant next week. It feels like my spine is gradually falling apart. I don’t know what to suggest to you but hope things improve for you x

    Helen H


    you have been going/and are going through so much…and sometimes a good moan is exactly what you need. I can imagine that the combination of retiring and filling out those benefit forms has really felt like the last straw, on top of so much pain and illness to deal with. I think you are doing amazingly considering, so be kind to yourself.

    I have asthma and reflux along with pain and chronic ME,and my voice fades away to a painful whisper quite frequently, and it can leave you feeling really helpless and vulnerable.

    Applying for benefits involves going through a lot of detail about what is wrong with you and what you are unable to do. For me that unleashes a lot of grief about the life I have lost and the things I can no longer do. It might be the same for you. Allow yourself time to grieve, losing your working life is huge.

    Husbands and wives often can’t find the right words when we are suffering before their eyes, but actions really do speak louder than words.

    Go gently and one step at a time.


    Thanks Joyce and Helen
    Just trying to get through one day at a time and hoping pain will get better


    Hi Lorna5, It is hard and understand you ,most with long term pain go through this and people do not understand and cannot grasp it unless they themselves have been through it and living with pain,, I spent 5 years going through and fighting with ESA when they first took over from incapacity benefit ,I have just claimed PIP from DLA as my condition got worse DLA was for life, so still waiting for feed back from them. but got a lot of help from benefit welfare team at my local council. who approached me about it and visited my home and filled out the form for me. I am now in the support group. but the process did push me over the edge and ended up with clinical depression, and my past bit me in the backside to, for which I had counselling, but it was the CBT and mindfulness that I done that pulled me through and the love that my wife and kids showed me , I am lucky as I’ve seen a lot of relationships don’t make it, through difficult times which just shows you the people that really care are the ones that are with you all the way.Also you have this site which is amazing and has helped me alot. talking to others that truly understand what your going through, It is hard at first to make that transition from work to living the way we are the most important thing is your health and quality of life, and mental state, and the acceptance that this is who you are at present. we are all here whenever you you need to vent and talk. Take care and best wishes , Lee


    Thank you Lee

    My pip assessment is Mon they are coming to me not sure what to expect but will just tell the truth, the lady at the job centre for ESA was lovely now have to complete the medical form and return it.

    My hoarse voice and swallowing difficulty is due to paralysed vocal cords on the right I have a scan next week to find out why but hoping it’s temporary

    I went to the pain clinic last week too they won’t do anything to my neck until I see the neurosurgeons. Also told me treatments will be limited now due to budget cuts in the nhs.

    Neurosurgeon is end of the month

    All appointments at the moment and feeling awful so much pain quite tearful all the time but actually feel I’m entitled to be sad and upset things have been pretty rubbish the last few months

    So hopefully by the end of the month I will have some more answers


    Hi Lorna5, stresses from outside influences can play havoc with you physically and mentally, and with added dealings with yourself with pain ect. can and in time will effect you. just got to try and break it all down to bite size pieces and priority and deal with one thing at a time then when sorted move onto the next. as if you let it all bombard you at once it will be very difficult and have feelings of not coping ect and depression , feeling low, You have a lot going on all at once, so I’m not surprised your feeling like you do , I get like that sometimes but you just got to step back from it all to get it all in order of priority. Good Luck with up coming appointments and wish you well, be kind to yourself and treat yourself. I have been through times like this, and understand it is hard but life has a funny way of sorting itself out with a bit of input to dealing with it from yourself. keep in touch of your progress, Best Wishes and Take Care, Lee


    Thank you Lee


    Hi all update
    Neurosurgeon said no surgery needed at present c3/c4 bulging disc has a tear which is leaking causing inflammation and pain, great no surgery so that’s something
    Swallowing still not resolved but voice much improved there must have been an issue with the mri scan as I now have a ct with contrast next week more tests
    Shoulder also has partial rotator cuff tear so not great but something I will deal with later need to get through some of this other stuff
    Feeling like a massive drain on my gp etc etc


    Hi Lorna5, well at least you know what the cause is ,and glad your has resolved a bit. and hopefully your swallowing will improve over time too, is it caused by the leaking bulging disc in c3/4? as its all inflammed just wondered.
    One step at a time you’ll get on top of it all , take care and best wishes with the rest of your troubles. Lee

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