Chronic pain 9 years

Hi I've been diagnosed with chronic pain by numerous doctors ranging from Europe to Canada my previous doctors both in and out of the uk have been very understanding of my condition after reading all my medical notes however my latest doctors in the uk of which I have spoke to 4 different ones I have to battle with to get medication I am on despite letters from all my previous doctors both in the uk and abroad confirming my condition and medications prescribed I am now at breaking point as I'm waiting for a referral to the pain clinic which I'm told could take weeks or months and until I attend that my medication will not be altered I'm worried that if I can't get my pain under control then I won't be able to work endriometrios has been ruled out by a laparoscopy and is have previously had a cyst removed by this procedure and prior to that another laparoscopy removing an ectopic pregnancy therefore my doctor in the uk does not want me to have an MRI scan due to the amount of radiation my body has already received from these previous surgeries can anyone help me as to what steps to take next as I've chased the pain clinic for an appointment but just can't wait weeks to control the pain I am in

13 Replies

  • Just a quick comment, a MRI is magnets not radiation so previous radiation should not rule it out.

  • I had chonric pain for 6 years , I had a hernia repair ,there cut into nervers ,lost my job as well , iam lots of drugs to try to help me , I been told they no more can be done ,so I know how are feeling . I try to my best with the pain ,but things are not easy , put weight on and getting more big as well,

  • Read below what I am on. Was on heaps of drugs some put on weight!

    Patches are what have made the difference been on them since Jan 15 and lost over 10 kg - when cant walk like once did - legs buggered. Eat no processed foods or sugary drinks or sugar loaded low fat anything. Stick to veggies with red meat or chicken thighs say and fish 3 times a week main meal. Muesli for breakfast add lots of nuts Brazil's help stop breast cancer Walnuts prostate and add Almonds help stop macular disease, some also lower blood pressure as well as sultana's for sweetness and cashews because like the taste. And luch well slice of grained seed bread with thin sliced by me Ham off the bone triple smoked in hickory or Turkey similar not processed at all. Cost a but but processed full of fat bad for you. No sugar and eat desert buy frozen packs of berries grown in Chile as keep in freezer. Black more beneficial so blue and blackberries along with strawberries for sweetness no sugar - half to start off with 1/2 spoon and or yoghurt but now down to no sugar at all and by themselves. Or a bit of milk helps to start with too. Got to keep weight down and can no longer walk or exercise it off legs wont stand it.

    With veggies tend to buy frozen all grown is Australia as clean and add all of them to eat with chicken thighs or fish or mince and rice. Now and them fairy pasta but watch as adds to hips ha ha. Sounds dull - not so. Get used to it and was already getting slowly down in weight over last few years lost around 3o kgs pout on smoking eating but also drinking spirits and coke. Its latter drinking that adds heaps too often we forget the drink maybe full of sugar.

    Frozen is good as keeps with pegs on - red white and blue to be patriotic ha ha and bit of all the lot on offer healthy they say. Brussel sprouts supposed also to be a small super food so have 1 as not keen on greens and do take butter on them naught but nice. Never given up dairy. Eat fish 2/3 times week and no worries.

    Maybe something in that help you too. We are what we eat.

  • I think many of us have been there. Every time we need to be referred somewhere on the NHS it involves a waiting list of 6 weeks to 5 months. All the while you're left to get on with suffering until your turn comes for that first assessment. I haven't found a way around this yet. I really hope you get your appointment soon so they can start adjusting your treatment


  • I suffer with the same delays re NHS. Pain clinic in this area used to be very good with appmnt times but now instead of 6 months between my steroid facet joint injections it is now 8 months and still not recvd a date! As for prescribing painkillers neither them nor my dr have given me anything that has helped with my osteoarthritis. I think this is happening right through the NHS in all areas.

  • MRI should only be an issue if they use "contrast" (gadolinium). It isn't radiation, but they have found that the gad can stay in the kidneys, especially those that are over 60 and/or have diabetes much longer than they had originally thought. Is it not possible for your previous doctor to write orders for your medications until you can get in locally? Seems to me that withdrawals from pain meds would render you unable to work/function. Best of luck. Chronic pain is so complex, I wish more were understanding.

  • If it happens that the pain cannot be controlled and you have no appointment suitable I'd dive straight to A and E. Sorry but that is what I would do.

  • I hate to tell you this but the pain clinic I went to would not give me any medication and even told me to stop taking my oramorph.she was rude and dis believing so please don't rely on them.I suggest you keep trying Drs until you find one that will listen.If you have to got to your local health care liason service normally called not take no for an answer.Its like pain doesn't exist in the uk.Good luck hunny.keep fighting.

  • Wow, you've had some bad experience with the pain clinic. I found the Edinburgh pain clinic sympathetic and helpful. Is there anyone else at that clinic that you can see? Sometimes it's one specialist that gives the whole a bad reputation

  • OZ no different here too wait up to 2 yrs for pain clinic - some GP's ignorant on chronic pain I've had it 6 years. I am on patches - buprenorphine - name here not same as UK is synthetic opiod. Also 8 a day 240 month 5 rpts Prodeine Forte 30mg codeine + 500mg of

    paracetamol both controlled drug permission to prescribe on PBS subsidized cost drugs. I also get a private script for 100 Codeine Phosphate tablets 30mg + 2 rpts - PBS allow only 20. Cost $40.50 for 100 lasts me around month and between the lot just makes it bearable.

    Here they treat elderly as if raging druggies yet illegals they say on st corner but seems they think some older ones get these and sell them to eek out the age pension.

    UK docs have not said paracetamol is useless except for headaches - and its toxic to the liver so 4000mg a day max hence 8 tabs a day 2 at a time takes 4 hours to pass this toxic bit through liver. . So the 100 Codeine without this is wonderful as no need to clock time taken.

    I think your meds are subsidized or were when I lived there years. And you will also be able to get private scripts I am sure.OK pay a bit more. Here pay $33 for each item on the script and pensioners pay $6.20. And we also have generics. Which are copies of drugs that were tried and tested but run ou tof patent. I find pan meds and anti-biotics all weaker than original. Extra levy on originals here now if generic available. Above I have said take Prodeine Fort well this is Panadeine Forte rebadged by drug Co to beat the generic manufacturers. I check out all scripts these days before filling on internet. Because GPs have given me some got home with them looked them up and found cant take them as not for me - in the tell the doc if you have had this or that - clearly I have. GP's dont ask too busy or dont acre and dont take history when move docs. So up to us seemingly to check lots do here now.

    So hope that helps people with pain a combination some GPS wont allow all too much of same thing but some on it here in pain forums find works. We're not all one size. I have been tried on Oxycontin didn't last on me fast metabolizer - means dentist 2hr local lasts 20 mins. so I go say inject drill or worn off ha ha. NO expert but codeine not that addictive its the Oxycontin types that seem to be. Not for me chewed it up. Also tried Lyrica - side effects nasty. None with codeine but constipation which is treatable and got a do it your self enema these days if get too compacted as neglected to keep a check daily. Usually movicol daily in water with a teaspoon of bi carb of soda to keep the caner away does the trick. Got that off the net Italian Professor chair Cancer teaching hospital found Bi carb killed cancer cells by accident. So advises take1 teaspoon a day in water. Cleans everything well, burnt saucepan overnight soak layer water+bicarb and voila - clean. Most Urals or Movicol is Bi carb anyway check it out.

    Reading sounds like can move docs so do so as no good having one who wont listen. I had problems getting patch + Prodeine 240 a month and repeats from 4 GP's before found current one. Really worries me because they shell out a script for 300 Panamax which is 500mg of paracetamol or can buy 100 tabs in chemist for $1.32 yet these are far more over dosed by ppl - who do treat codeine as should do generally die to warnings.

    Hope I helped a bit - some anyway.

  • Hi.

    I'm very sorry to hear off your current predicament.

    I have had my "Chronic Pain" for 10yrs now. I'm very sorry but I am not able to give you much "Help"

    I wish that I could but I would be giving you false "Hope"

    In 2005 when I started to get my Chronic Pain. This was after a Brain Operation (NHS). using "Radiation" That went horribly wrong!!

    After 3years I found that it hadn't "Worked" Great!!!!!!

    Since then I'm on my 2nd GP, gone through 5 Pain Consultants & Hodpitals hear in Birmingham\Oxford\Liverpool.

    The NHS won't "Fund" my only "Hope" off "Treatment"

    I have been given numerous Meds which have been either to "Weak" or to "Strong"

    I have been to my local MP & I contacted NHS & Government groups but they still won't fund me!!!!

    I'm sorry that I can't give you any better news.

    I'm not going "away" they won't get rid off me that Easy!!!!

    I'm now Bed/Housebound.

    I won't go down with out a "Fight"


  • How do you feel if you don't eat anything? Have you ever been tested for coeliac disease (painful every time you eat anything with gluten) or food intolerances?

  • Know exactly how you feel!Have had Fibromyalgia for 20yrs.I wouldn't get too exited about the pain clinic.They told me to sit on a stool instead of standing at the sink ,when I was doing the washing up.Brilliant.!!

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