What can you advise??

Hi Everyone!!

I'm new here so please be gentle!

I suffer from neuro pain in my hands and feet,and have had my ankle 'fixed' in the right angle standing position due to breaking it and having complications in the way of walking on it for a few months.As you do.

I have been taking pregabalin for 6 years and up untill 2 years ago co-codamol.My liver had a tantrum,so now I have codeine,8x30mg in total daily.I cannot take tramadol without feeling very sick,so on one of my stays in hospital I was given dihydrocodeine as a top up,when the pain was bad.My GP was just about OK with this, nagging me to stop the dihydrocodeine,but working with me when I tried and failed many times.

But then disaster.

My GP left.

Now I am at the mercy of the other GPs in the practice,one of whom is very work driven,and thinks everyone else should be.Sorry,but my mother never left me a business so I find things a bit harder than she.They ALL want me off the dihydrocodeine,even suggested paracetamol.OK I admit it is probably hard to feel pain when you are dead but as I was advised to leave paracetamol alone after just escaping with my liver,a little extreme don't you think?

Anyway,has any one else had their GP suddenly be reluctant to prescribe painkillers?Do the alternatives,whatever they may be,work?

I have many other little glitches that make life harder,tinnitus,liver damage,pancreatic cysts,depression,migraine and back pain are the ones that haunt me most and could do without the stress of it to be honest with you.My Hubby says we should change practice,but to go and try and explain myself clearly,and not forget most of what I want to say is daunting,and they could be the same for all I know,and no,I have no friends/neighbours etc that I can ask.

Any views/advice would be interesting,thanks.

l

9 Replies

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  • Hi HollyMolly and welcome. I have been taking Dihydrocodine 30mg tablets in various amounts for 30 yrs without any problems. I am not you so I cannot recommend that this would automatically make it ok for you. If you are in pain and your GP is not offering any other choice of pain relief then changing GP is really the only choice.

    Do you need the meds? Have you tried meditation and or distraction to reduce your pain. Others will be here later to talk about that.

    Remembering is about planning. If you are off work then getting the best help for your pain issues should be your main occupation. Write out lists for yourself. Think about the items and juggle them about until you have a neat new list to take with you to your doc of all the important things to ask and explain.

    Regards Rib

  • Hi Rib and thanks for the fast reply.I have tried to find an alternative,distraction,aromatherapy,mind over matter,just to test myself,I got my Hubby to mix placebos with DHC and not tell me which one I was getting.Unfortunately I was right every time when I said that it was not working.The one time I want to be wrong!

    List writing is also a bit of a joke with us at home,it's all I seem to do,and I just love crossing things off.I can list my lists (I really should get out more )

    I was just wondering if this was a problem with others,my Tesco delivery man has the same sort of issue (things I talk about)so I thought maybe it was one of their 'get patients off meds because there are too many getting in the paper' sort of unsaid tasks.Any ideas?

  • Glad to see you got the excellent posts later in the day. I wanted to get you a reply in the horrid early hours. Yep, I make lots of lists. Item one on today's list was, "make a list of .....". Rib

  • Hi hollymolly sorry to hear you are going through such a hard time of it, you have came to the right place , I have only been here a few times but everyone is so helpful and sometimes it's even just people saying hope you feel better soon that gives you a little boost.

    Anyway I'm not sure if I can be of any help , I was being treated for sciatica for months and was prescribed tramadol, cocodamol etc and then dihydrocodeine, have to say none of which really worked for me. Them my GP prescribed Diclofenac , which made a massive difference , the first time I was given it was by an emergency doctor via injection as I was screaming with pain and within half an hour I had relief , it is an anti inflammatory but seems to do the trick for me. I am on morphine tablets as well now though as they discovered I have a rumour at the bottom of my spine and not sciatica which they treated me for approximately 4-5 months for. Hope this helps a wee bit , I take pregsbalin too so doesn't interfere with that. With regard to your GP , is there not another one in the practice that you have faith in, I hope you get that side of things sorted out to as you need to feel you can trust your GP and that you feel they are looking after your best interests. Sorry I couldn't be of more help hollymolly, but hope things get better soon, Morag xx

  • My dear girl, you have a lot of types of pain going on. This is not the typical

    kind of pain that many on here will be able to relate to. You have bone pain,

    joint pain, neuropathy pain, organ pain and it sounds like some emotional pains

    too. Each and every one of those types of pain is treated with a separate drug

    traditionally and especially in your case, One single drug is not going to work

    unless it knocks you unconscious.

    When you have neuropathy, it's a bunch of nerves that are misfiring. The

    pain will all start in the place of the damaged nerve most damaged and it

    shoots pain signals to the brain even when there is not pain there.. it also

    shoots pains in many different directions when the brain doesn't respond

    to tell you to stop that pain.. what you need are nerve pain pills. (yes, there

    is such a thing) Forget what the pills are used for traditionally.. we can talk

    on that later. Nerve pain pills will wipe away some of the nerve pain.

    Bones and joints can be treated together with one pill or injection. With all

    of my heart and soul, I believe that you have a need for a prescription one.

    The doctor loves anti- inflammatory drugs and there are some excellent

    ones out there. Toradol is my very favorite one that I like and other people

    like as well.. but your kidney's must be working very well.. ideally it's an

    injection into a vein but only if you have an IV.. the relief comes in seconds.

    You can have it injected into your arm though...wait 30 mins.

    Joints can be a bear to calm down and backs too.. lets just talk joint pain

    though for a minute.. a steroid injection might be your best answer.. it

    will shrink the inflammation fairly quickly..can be taken with other pain

    meds and can help loosen up those joints.. Some can be taken orally,

    by shot or by IV.. If your ankle was broken more than one year ago,

    it might be time..but less than that interferes greatly with healing.

    Traditional pain killers can be prescribed as a whole without the adding of

    pain relievers. Oxy - just plain ol' oxy is one of them..

    Once in the rheumatology offices, you will learn so much about pain and

    about treatments for RA. There are many treatments.. I can discuss in

    private messaging or hop over to the RA forum and discuss greater details

    of all of those medicines.. each one is formulated differently.

    Whew, this got pretty long winded.. sorry.. xxx big, big hugs. Karen

  • You've got some great replies...and I'm with yikes especially: have your drs looked at the possibility of an autoimmune condition as a primary underlying most of your health issues? (Apologies if I've missed something, but my impression is that you haven't been diagnosed with a chronic autoimmune condition)

    Perhaps my tale can help explain why I'm wondering this:

    Lifelong, I've been managing similar stuff to yours, which began to get even worse in my 30s during the 1980s. Over the decades, consultants played pass the parcel with me, keeping me mostly on prescription NSAIDS and opiate analgesiscs, which barely did more than keep me groggy. At one point, ENT told me I'd be in a wheelchair by 50 due to nonpositional vertigo caused by arthritis in my neck. Severe flares & emergencies over the decades meant hospitalisation on what drs called IV "detol"....there was even an amputation of one finger due to a 14 year old chondrosarcoma drs had called arthritis. Permanent bilateral spinal facet joint denervations helped numb lower & upper spine pain quite a bit. The persistent peripheral neuropathy in hands & feet + recurring joint subulaxations were dreadful. But drs told me all my connective tissue etc stuff was "normal"...meanwhile I discovered what lifestyle management, diets, supplements, therapies helped me most, and conscientiously coped that way. Fortunately my family & boss were v tolerant.

    Then, 4 years ago, the symptoms in my hands, ankles, feet became so extreme that my pain consultant & my gp made sure I was referred to rheumatology where a very lupus experienced consultant diagnosed the multisystem autoimmune condition systemic lupus as my primary, with global Hypermobility of the Ehlers Danlos type. Then we discovered I'd had systemic lupus diagnosed as an infant & teen....but my mother never told me. So I moved to the uk at 21 where the nhs took over my care without knowing about the lupus. So lupus & hypermobility turned out to have been underlying almost all my health issues

    Now I'm 61 and, thanks to my brilliant rheumatology dept, am feeling better than I have since the 1970s because I'm continuing all the lifestyle management AND am finally on meds that really help my whole body: daily hydroxychloroquine + amitriptyline + mycophenolate with prednisolone tapers and steroid injections as necessary...and all my secondary health issues, inc the ENT stuff, are responding to this systemic treatment, and the consultants at all the other clinics I attend for secondary conditions say these systemic meds are also improving the conditions they are treating me for. But now I'm off all those meds that never really helped: I only need to take prescription NSAIDS and/or opiate analgesics and/or OTC painkillers now and then during mostly brief severe pain flares (eg subulaxations & migraines)

    So, reading your question, I'm wondering:

    would it be a good idea to re brief gthis new gp & get a referral to a rheumatologist, and: before you see the new gp, I'd urge you to prepare a careful complete chronological list to use at your first appt: of all your diagnoses & procedures & meds that find or didn't help, + all your persistent & recurring symptoms...maybe you've done this already? Your surgery will have all this info, but gps seldom can actually take the time to get this sort of overview of patients....so, if we're well enough, we do best to take this time ourselves. And this listing will help you in presenting your case to the rheumatologist too

    Anyway, maybe you've done all this already and been disappointed...but remember, not every rheumatologist is experienced enough to be able to help (I saw several rheumatologist's & neurologists over the years before my lupus was recognised....they all missed it)

    Am v glad you posted, and am wishing you good luck

    Take care

    XO

  • Hello Molly, i'm sorry that you are going through a bad time with tour GP. And Igo understand When you have a new GP you have to have that healt bonding connection that you know you feel comfortable with. So when yo have a new GP they may have a different way and style because that getting to know you takes time. When you are used to taking the same tablets for a good while your body gets used to them. The GP as options change to other medication for the problems can still be solved or in most cases have a reaction that they don't agree with your body. No one likes changes when they experience that the new medication doesn't seem to work as well. i had to try 4 different soughts before the changed medication worked due to different reactions I was having while taking them. The advice I can give you is what I did with my change of GP that's to explain to your GP what you have explained to us that you unsure of the direction the GP is taken you. explain what you felt better on for your health and explain you need something to work on me without reactions like the medications that worked, You have got to remember it's your body and .you are a patient that needs medication for your needs that you feel comfortable with. If you are not happy after the GP gives new medication and you have give it time to see if it as worked with no side effects, just go back and tell your GP they are not agreeing with me what else could you give me that is the GP job for the patient everyone is different and it like I said it is your body. You also should have a regular blood test when you are on medication rest of your life checking for internal conditions as well with water samples. I hope you go on alright and you find what medication that easies without side effects, but please talk and be very open they are working for you and you have a right and insist if you are not happy GOOD LUCK.

  • You lot should be bottled!OK just to cover somethings you brought up-

    Mogi52 you should hear my GP 'oh you don't want to end up on that' is the standard answer for a request for something stronger than codeine.Morphine is evil and not available in tablet form,if you want to believe them.

    Yikes,you are like a soothing balm.I want to see these Rheumatology people.I did forget to mention an arthritic and very painful knee.But as for oxy....see above for morphine.I was allowed it for 2 weeks after my ankle reconstruction.Any longer than that and I would of turned into some drug crazed banshee,so the GP I saw when mine was on holiday said.

    Barnclown,I am so glad you are feeling better,but my what a journey.It should not of taken so long should it?I bet you feel better now than you did 20 years ago.Enjoy every moment,you deserve to.Again,rheumatology is brought up,I had never heard of these people before coming here,yet many have picked up on it.That has to be worth looking into.

    And Geoff1956,you bring up something I think a lot of people miss-you do have to talk to these Doctors,as brilliant as thr think they are,they cannot read minds and I do inform them of what happens,if I didnt,I dread to think where I would be.

    My big downfall is having a history of alcohol abuse.

    Now I understand if you want to shake your head and mutter 'well what does she expect selfish little madam' or such.But not everything that is wrong with me is because of that,it is just easy to say it is.I have been punished so harshly......I have not touched anything stronger than Pepsi for 4 years now.But even still,only last Thursday did the GP who has my case say 'oh you where drinking then' when referring to my liver tantrum....which was TWO years ago,as well she knew and was either having a sly dig or more forgetful than me.I have lost my independence,career,hobbys,self confidence and dignity to name but a few.My Hubby has his own health to worry over now,and blames me for his 2 fights with superbugs.He was not unscathed by these.I am lucky my son does not resent me as much as my daughter.

    Oh I'm sorry for getting all me me me and bringing the blog down,you have come up with some brilliant ideas,I just get a bit like that now and again.Is there a board about rheumatology I should look out for,I will nose around the site more anyway though,I only found it yesterday and already you have given me many ideas.Thanks everyone.(Oops that got a bit long,sorry!)

  • If your GP is reluctant to prescribe pain killers, or doesn't seem to be helping, ask to be referred to a pain specialist. They can be really useful at adjusting your meds so you get the best pain relief possible. Mine got changed so I had a regular dose of one med, and saved another for "breakthrough" pain, and that worked a whole lot better than the way I'd been using them before. I also had a couple of pain killing injections into problem joint areas.

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