Hi everyone

I'm looking for some advice. My doctors have suddenly decided to reduce my painkiller, Dihyrocodeine, down to 6 a day and i have been told to take paracetamol and naproxen instead. They have really upset me and haven't stopped crying since. as I don't believe I will be able to manage on reduced painkillers. I have a twisted pelvis and this gives me the most pain and I have fibro which obviously gives pain as well. They haven't offered me an alternative painkiller. They also want me to go for pain management as well and she even said you never no they may be able to get rid of the pain! I have has this for 22 yrs, and it would take a Miracle to get rid of my pain. I have has all the private treatment going over the years and spent a fortune which was a complete waste of money. Any advice/ suggestions would be helpful please .

Thank you

Debs x

21 Replies

  • Good evening,I really really do feel for you as I have had the same thing happen to me at various points from different g.p's over the years.Alot of g.p's especially the older ones and in my experience Indian ones are not very sympathetic and understanding of fibro and they are too overly concerned with you getting addicted to painkillers,and some don't even believe that it is a proper condition like my current g.p.Since I've had fibro for 9 years I've been told that Iam addicted to painkillers when Iam not!,that I shouldn't be on so much tramadol for my age and should come off it!And when my pain was at its worst my g.p refused to give me anything stronger so I took myself to a&e as I felt suicidal with the pain.They gave me a morphine patch which really helped but my g.p refused to prescribe it when it ran out.Yet other people have amazing g.p's who are open and willing to try to treat your pain.Its a matter of finding a good one,something which I need to do.Your g.p should not suddenly reduce your painkillers and I would insist that you need them or that he prescribes you something else for the pain to try.Failing this,you could make a complaint about your g.p and try a different g.p or join a new practice.As for the pain management I found them to be brilliant and very helpful,they can't take the pain away but can help you to find ways of managing and reducing your pain xxx

  • Your story is exactly what I fear and you've summed it up exactly. How did you cope and what happened when the pain got so bad. Have you the correct medicine that works now? I'm going to change GPs today to a lady that knows fibro, so iv been told. Iv had pain management before and if required my to go and lay down when the pain is bad, which I can't do when I'm at work. I'm just so scared what's going to happen xx

  • Unfortunately at the time I was married and my ex husband is an alcoholic so I believe now that the stress of it all made my pain worse.I wasn't coping but I eventually got help through social services and I separated from him and then later got divorced.I have been taking the same meds for around 8 years now and they take the worst edge off the pain to a more manageable level but when I have flares which is quote often now I have increased pain and there is nothing else available for me to take other than ibuprofen which is hard.I asked to be re-referred to pain management but my useless g.p was more concerned with me being referred to mental health which I have done and now they have sent me a letter to say that they can't help me.I need to go back and see my g.p but Iam dreading it as she doesn't think Iam ill and doesn't believe that fibro is a proper condition.This is why I need to change g.p again :(

  • Aww poor you, that's awful. My 1st husband had an affair and left me and that's when my symptoms worsened. Luckily the doctors gave me adequate mediation, and have done so for the last 15 hrs now up until now. I do have really bad days occasionally, and have to ride it out bug not often. The trouble is how do you find the right GP? I really hope you find one xx

  • Thank you,I hope you do too.Its a shame that there isn't a good g.p list where you can find one lol xxx

  • I can totally relate to your situation. My ex husband is an alcoholic and was mentally and physically abusive which just made my condition worse. Stress definitely makes everything worse!! My GP does at least believe that fibro is a proper condition, and prescribed Pregabalin but that made me put on 2 stone, made me too drowsy and dizzy, and made my poor sleep situation even worse. I now have paracetamol, co dydramo,l. co codamol and naproxen to take (obviously not all at once!) depending on the pain levels. I tried tramadol but that made me hallucinate! I hope you get your meds sorted and please change your GP!

    best wishes x

  • Hi Debs, how many D/codeine were you taking before as 6 a day is the recommended dose for severe pain, 8 is the absolute max. I have taken 6 a day for around ten years and I now take paracetamol with them which helps a bit. I would try the pain clinic it may help you sort your pain meds out.

  • Hi there

    I am so sorry to hear of your plight at the current time. However, I think I would give pain management a go as I have read many posts on the site from people who have gone to pain management and they have had some good results by attending. Your GP sounds very unsympathetic though and I was wondering if you had another GP at your surgery that you could see? I think you have hit it all on the head by saying that private medicine hasn't done anything to help as it really sums up what we are all facing and going through!

    I sincerely hope that you find the answers that you are looking for.

    Take care

    Ken x

  • Hi Debs

    Who has decided to cut you down? Was it your Gp? And if so did he give you any reason why? Have I got this right, they're allowing the codeine 6 x a day, then want you to top up with naproxen and paracetamol? I don't understand it, you've been on those meds for 22 years and now they want to change you? There are alternative pain killers out there which you could ask to try, you could also change your Gp to a more sympathetic one....the problem is with chronic pain conditions is sometimes its hard to stick to what they say as the pain can be worse on another day, not so bad the next day and so on. I'm sorry I can't be anymore helped but am really surprised and shocked that they want to change you after 22 years. My sister insisted on a pain killer which is hardly prescribed now and in the end she had to change her Gp. Hugs x

  • My Doctors surgery has been taken over by new GP's and they are the ones who have said I need to stop taking them eventually as they are addictive. She wants to me to take the max of 6 along with the para & nap. They said I was taking too many, 8 and if the pain was bad then very occasionally 10. So eventually they want to cut them out all together and leave me with none. She thinks that pain management will get rid of my pain..... That would take a miracle! She questioned I had fibro at all. I spoke to a friend of mine as to what she takes and suggested I chsnge to her GP, so I'm going to try and do that today. Yes you are right about the chronic pain, one day I can be limping for no apparent reason and the next day fine. I run my own little business and I'm worried now it will effect my ability to do so. I even told the dr that and she said I must give it a try. I was extremely upset and she wasn't bothered. X

  • It would seem to me it's a bit late telling you that the pain killers are addictive after 22 years!!! I would deffo try pain management and change your Gp. Any pain killers can be addictive as we want the pain to subside Good luck hun x

  • Do opt for Pain management the classes can be really useful. I think the part on pacing wins.

    We know pain killers are addictive but most of us have other symptoms that require high pain killers to keep them at bay. I tried to reduce mine the other week and as the Doctor said but you need them to regulate your pains. So we are stuck arent we.


  • Hi debz, I completely understand where you are coming from I too have a twisted pelvis along with big lumbar spine problems (a recent compression fracture) so I really know how very painful the pelvis can be, and you have my fullest sympathy.

    I have heard recently of a fair few cases where GPs are trying to reduce the number of drugs they are giving out, as I understand it, although they would probably not admit to it, but they are under pressure from the local PCTs to cut back on spending. However as your case so clearly demonstrates you can't have someone who has had chronic pain for the length of time you have just to suddenly cope without the level of pain relief that they need. Paracetamol is certainly cheaper to produce and I would imagine Naproxen likewise. You say she has asked you to take these, not instead of the dihydracodeine, but to top up with the paracetamol and naproxen, which does make sense, you may just need to adjust the time you take them, but it could work out well, paracetamol is very often used in conjunction with other pain meds and seems to improves the efficacy of the other drug.

    Nevertheless, I really think you should give the pain management a go, they may well, as other people have mentioned, be able to come up with a more modern drug, that will hopefully make life easier, and they do give very good information on how best to manage your pain, pacing being as gins says a winner, if you can keep doing it! The flippant remark of the doctor about getting rid of the pain just demonstrates how little she understands fibro.

    Sending lots of positive healing vibes your way :-)

    Foggy x

  • Hi Foggy, I'm sorry you have a twisted pelvis too :0(. The doctors in the end want me to come of the Dihydrocodeine and manage on paracetamol & naproxen, that's why I'm not happy. This morning I took 1 Dihydrocodeine, 2 paracetamol and 1 naproxen, after 3 hrs my pelvis feels like it been kicked in and my legs hurt, I'm just never going to be able top cope. I have gone to a different doctors surgery this morning to register with them, they were recommended by another fibro sufferer. So hopefully they won't leave me to suffer and be unable to cope. Thank you for your kind response xx

  • You are very welcome and I think it is a good idea for you to try and find a surgery where you may be better understood. I would say though that dihyrodcodeine is a

    a very old treatment, and you may find it beneficial in the longer term to very very gradually change over to a more advanced medication which could be more effective for you. I do understand though that you have to do what is right for you and you are the only one who can make that decision.

    Would you mind me asking if you have had any proactive treatment for your pelvis ? I am being treated by an osteopath who has in the past not, "cured" it, but has certainly made is more manageable and less painful to live with.

    Still sending you lots of positive healing vibes. :-)

    Foggy x

  • I was hoping she would offer me an alternative painkiller but she didn't. I got my twisted after an emergency c section with my daughter who is now 22 and I was 26 then. I am now 47 and iv had treatment from an osteopath, which was just awful, he out me into shock! I've seen a Physio, a chiropractor, then found a

    Mctimoney chiropractor and was great, she would realign my pelvis and would stay for about 3 months. Then one day I had treatment and my pelvis ceased up and I couldn't walk for about 6 months and was in severe pain, had to leave my job and didn't work . I think, looking back, was the start of fibro. I was given cranial sacral treatment and pain management and it's now under control with the painkillers as well. Now the doctors have done this, I'm really scared my pelvis will become unbearable again and I can't run my little cake business. Xx

  • Wowski a little cake business, just up my street, I used to have a tea room which grew and became a restaurant, and then got too big to manage :-(

    Have you ever tried a brace round your pelvis to support it, I have one for my lumbar spine and another for my pelvis, which stops you from turning and twisting it badly. It's helped me a lot and it may help you too :-)

    Foggy x

  • Hello there I have been coming off same med as you and its really hard it has taken 3 years and I'm down to one and half and I have severe pain all the time ,its really hard and painful to get off them what I do is take other pain relief whilst coming off .I have noticed I'm taking more of the other pain meds on a daily basis .I feel for you because I'm walking in those shoes .x

  • Wow, I can't believe what I'm hearing from everyone, why did they reduce yours? What do you take as well. I'm so scared as to how I'm going to end up! X

  • Hi debs

    Ask your doctor about dtrans patches(morphine) slow release they last 3day also amitripyline I was diagnosed in 1994 so tried most meds I am on a very large mix of meds but these are among the best

    Hope this helps

  • Hi, brilliant, I am going to see the nurse at a new practice this afternoon, I will ask her. Thank you. I take amitriptyline at night and they are great. X

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