Let down again in so much pain feeling low!

Hi all back again,

Sorry for the essay just feeling pretty low right now.

So I had my referral date set after a year of suffering with this pain badly to see neurosurgery team about back op or getting something sorted for this i shudve been seen them on 8th may and was finally given a glimmer of hope for something getting sorted after all this time as nothing else has worked.

I had a phone call from hospital secretary today passing me a message that its now all been cancelled from neurosurgery and i have to wait for yet another refferal to pain management who have a really long waiting list. They were rude and useless wen I seen them last,nw I have to go bk just to get an MRI done that they should've done months ago before I can be re referred to neurosurgery again.

I no they are busy and that but I'm just fed up of pill pushing GPs and nw another minimum of 13 week wait again for an MRI.

Im sorry for the ranting but I'm so angry rite now and am getting no sleep and in constant pain.. I always try to think positive n have an open mind to everything but going through this hell is really breaking me as it just seems like constant battle to get the basic help that should be in place.

I will finish this post here for night as I feel like I could rant forever with my mood ATM sorry for the headache any of u reading just had enough today soz :-(

14 Replies

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  • i am so sorry u r going though this its awful i wud go to see ur gp and tell them that this is not gud enough u need 2 do something here put rhe pressure on them..

    i understand ur level of pain i am awake overnight with pain and my gp stopped my sleepin tabs and my strong painkillers but i went to see him yesterday and he gave me them again to July as maybe by then i will be called for results of my mri scan but i doubt it as only been waitin a yr..

    try and relax hun i kno its easier said and harder done when in so much and theres times myself i reach the point where i just cry as the pain is so unbearable i hope u get some sleep and relief eventually tonight hun take care xoxox

  • It's when I hear stories like this that it makes me glad that I have the medical care that I do here in the US. Of course when I get the bill I don't like it. But we all seem to manage.

    I wouldn't complain to much about a doctor who is willing to give you pain pills. They are few and far between (the doctor that is), even in your country. There is a war on to stop over prescribing of opiates in the US. And unfortunately it is causing victims out of chronic pain patients.

  • It does sound like you are having a frustrating time. Blame lack of investment in the NHS but do try not to get angry and stressed. Both of those emotions make pain worse when the body tenses. Easy to say I know but I've done it myself so many times and seen the result.

    I don't know what works for you but I use guided meditation apps or relaxation sessions to control my feeling and get my breathing and body tension u der control.

    Maybe going for a walk helps you, cooking or a hobby.

    I hope you get some relief soon

    Dee

  • Thank u for all ur replies and support aswell.

    I always try and stay positive n take sum deep breaths i think i just needed a release from built up frustration and was in so much pain yesterday with no sleep it got the better of me I think.

    I totally appreciate the NHS and all they do and I know how stretched it is lately with staffing and funding but I feel sometimes the care element is passed over by some if them when it takes them seconds to just keep giving perscription of painkillers n send u on ur way..and as its opiates too I just don't think for some its the answer would be better and more cost effective for them to try and find out the issue although totally respect the fact it helps a lot for some things having painkillers in place as it has helped me also in past.

    Anyway its a new day n will hopefully hear from a doc soon or I'll contact them so sending sum positive vibes out today and hope u r all well as can bexxx

  • Hi, have you heard of PALS? The patient liason service? You can find your local pals service by googling pals and your postcode. Explain to them what has happened and how frustrated and let down you feel. They will evaluate your situation and if they can help, they will look into it for you and liase with the different services for you... Im working on tiny exercises myself atm to try to rebuild atrophied leg muscles. It does seems like nothing is happening, but stick with trying to keep positive. From tiny acorns, great oaks grow. Have you heard of mindfulness? Ive been studying it and using guided meditations on youtube and learning breathing exercises. Stay strong, we'll get there :-)

  • Hey thanks for reply :-)

    I forgot about pals but have emailed them now with my concerns and for further info so hopefully hear from them tomos fingers crossed someone can help me.. its ironic I worked in care industry job i lost due to chronic pain with individuals with extreme challenging behaviours and autism and mental health i have worked for years supporting every aspect of their lives and getting them all the help they need, but am so stuck when it comes to my own lol . I'm sure slowly but surely with the tiny acorns I can grow the big oak.. I will get there eventually I'm not a quitter and so want to get back to work. I hope ur recovery is going well the exercises have done wonders for shoulder and arm injury I had in past and physios are usually awsome and straight to the point wishing you a speedy recovery :-) xx

  • Hi Nicnsid, I have just had a peek at your symptoms of sciatica and coccyx pain, now not saying this will help you as I have no idea if it will as we are all different.

    I had over night relief and it has all kept away since taking 5000iu of vitamin D3.

    Vitamin D is the sunshine vitamin and vitamin D3 is an anti inflammatory.

    My Doctor said I would never cure my Coccyx pain, just learn to live with it, but thankfully I worked it out. I also had sciatica, coccyx, hip and groin, pain, lower back pain and restless legs at night. If I forget to take my D3 all pains comes back the same day to remind me to take my D3.

    For seizures, an idea maybe to check you vitamin B12 levels too. Vitamin D and B12 often go hand in hand and I believe there is a link to seizures. (Not saying yours is though,)

    A relative told an elderly person who had many seizures a week it might be an idea to take some B12 supplements, now their seizures in a week are down to an average 3 from an average of 19, (only what I was told, so don't rely on it.) There are mentions of seizures in the brilliant book - Could it Be B12 An Epidemic of Misdiagnosis, by Sally Pacholok, it mentions a 26yr old severely deficient in vitamin B12 and being cured of seizures with B12 shots.

    Most Important if you do get checked - Do NOT start to supplement, ALWAYS get B12 blood results before considering supplementing with vitamin B12 supplements, many cannot absorb B12 supplements, so they won't work, you might need shots instead, if you supplement before it will skewer results and make them look too high and look like you do not need to be treated, also you will never know your true blood levels which you need.

    85% of us here in UK are either low or deficient in vitamin B12 and vitamin D, I was and had no idea.

  • That's quite useful I was trying to look in to this to see if there was anything less harmful that could help I asked for my blood tests and had them today as I'm also anaemic so they are doing the routine checks of kidneys liver etc alongside these just to ensure medications etc aren't causing more harm as epilepsy ones have had to be altered and increased due to seizure the other day and another fall on painful side so that hasn't helped I am trying all routes to get sum answers at the mo so fingers crossed something will work soon xx

  • Just to add that B12 deficiency is often over looked or missed. Most prescription Meds have far too many side effects when often high dose natural vitamins and minerals can be used just as good. Sadly vitamins and minerals do not make money for Big Pharma. Good you are looking into it yourself, these days we need to take control of our own health, many in my family would still be ill if we hadn't sorted it out ourselves, which is an odd thing to say. :) :)

  • I totally agree my cousin is really good and quite clued up over yrs with alternative therapies and some vitamins as oppsed to her pet hate the opiate meds and there affects so have been asking her for opinions now n again on bits but not fully looked into all the pros n cons gor myself yet to make decisions n discuss with epilepsy nurse too..she's awsum just to cover all angles but atm I will try anything to get me back to normal n I just decided on focusing on the bet i had with my previous boss and new goal that if I can get this pain sorted and gone..get my job back to helping others and then next yr I will train n do the thing that brakes n pushes me the most and will run a marathon to give funding back to certain charaties that helped me and family along the way..never want to go thru this again so I've set my goal will find a way out of pain and get healthy fit and go for it just try n feel sum positives to get thru the negativesxxx

  • I have just happened upon a piece about coconut oil reducing epileptic seizures in children it is to do with the MCT's in Coconut oil.

    authoritynutrition.com/top-...

  • Thinking of you. Understand how you are feeling tiredness on top of the pain is the worst bit. Tomorrow may be a little better with any luck

  • As a chronic pain patient for 13 years I can appreciate your pain. I am sorry you're having to go through all this. I live in the US where we are dealing with a opiate addiction crisis and because of this senators are playing doctor trying to pass laws that do not take chronic pain patients into consideration. And our Centers for Disease Control are passing guidelines that also do not take us into consideration. Therefore it has become almost impossible for chronic pain patients to get the proper care we need to control our pain. So many doctors have dropped their patients for fear of losing their licenses. In some cases leaving patients to withdraw from their opiate medication cold turkey which really constitutes patient abandonment. I truly hope you get the help you need sooner rather than later.

    There is a website that I like to frequent for chronic pain patients that I find very supportive. It is visited by people from all different countries which means someone is usually on it at all times of day or night. It does have a lot of people from the UK but it also has people from Australia, New Zealand and of course the US. That website is

    Mychronicpainteam.com

  • Hope you have some reat. All the tension and stress caused by delays has a direct increase in pain levels. Thinking of you.

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