Oralmorphine didn't help? Now what??

Well after a quiet weekend and trying Oralmorphine 2 x 5ml up to 3 times a day plus paracetamol and pain still exactly the same??

How can this be?

I have GP today at 3pm, as he was interested in how I got on with it.

I'm so disappointed back to the drawing board again.

Can Anyone suggest anything stronger as a pain control as I'm so desperate now.

Hardly sleep, this is new for me as I normally sleep round the clock, I'm so tired now, eyes sting etc.

Love from Lottie

17 Replies

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  • Dear Lottieonline,

    I am sorry you are having trouble finding pain relief. There are many people living with Fibro who either do not get benefit from Opioids or do initially and then the dose needs to be put up & up. This obviously runs the risk of dependency and issues associated with this too.

    Oramorph etc opioids apart from Tramadol do nothing to relieve the pain experience. So to answer your question 'How can this be?' As per the recent research has suggested that opioid medications do not work as efficiently in Fibro patients as in healthy people because of a lack of available opioid receptors in the brain of Fibro patients. According to the EULAR Guidelines for the Management of Fibro, strong opioids - e.g. morphine - are not recommended for Fibro. If a doctor is unwilling to prescribe strong opioids for a Fibro patient, it is not necessarily because they do not believe that the patient is in pain: probably more that they are unsure that the side effects and risk of addiction with strong opioids are worth it when they do not work very efficiently and other forms of medication may work better (Lindsey Middlemiss 2009)

    Reference: fibroaction-public.sharepoi...

    Tramadol is reported to have a serotonin pathway and this has been suggested why it works in Fibro. However, there are other recommendations and do see this FAQ here on the community with links to the FibroAction website

    healthunlocked.com/fibroact...

    All factsheetsyou can download and print to take with you to your appointment if you like. If your GP is unsure or reluctant maybe you need to ask for a Pain Clinic review.

    There are 2 posts you may be interested in about Refusal of Referral and Pain Clinics;

    healthunlocked.com/fibroact...

    healthunlocked.com/fibroact...

    Please know do try to be assertive but also ask their opinions as some GP's do not respond well if they feel the patient is either more informed or suggesting to them than the other way around.

    Hope this helps :)

    Best Wishes

    Emma :)

    FibroAction Administrator

  • Hi Emma,

    GP wouldn't give me anything at all!

    He did increase my fentanyl patch to 75mg to change every 3 days.

    Nothing else at all. I could cry.

    I did cry

  • Hello Lottieonline,

    I am so sorry to hear this and know although this won't make you feel any better I've been there too. Did you print the factsheets about medications to take with you? I would consider asking to see another GP and if s/he reacts the same way, then ask for a pain clinic referral. Have you been to a Pain Clinic or to see a Pain Consultant before?

    I would consider making another appointment with another GP asap, as you feel your pain has not been addressed at all.

    Here to talk if you need to

    Best Wishes

    Emma :)

    FibroAction Administrator

  • Been to pain clinic twice, a neurologist twice, MRI on brain and spine, nothing showed up.

    I took all ur fact sheets yesterday he glanced at them and saidb'oh it's good you have people to chat with!

    Bloody cheek!

  • Hello Lottieonline,

    Sorry little one home from playschool! I am so sorry he was so dismissive, I cannot begin to suggest why although we can all probably hazard to guess !

    Have you seen all the GP's at the surgery? The NHS choices information was written with the help of our founder and treatments on their site mention Gabapentin or Pregabalin among others.

    nhs.uk/Conditions/Fibromyal...

    I know you probably feel worn out and despondent but do consider making another appointment and take the NHS Choices with you highlighting the appropriate lines with a pen It is not right to be left experiencing Pain like this.

    Have you got any Epsom Salts for a warm bath or lots of heat pads?

    Further options if you still feel your Healthcare needs are not being addressed include Patient Advice & Liaison Service (PALS), writing a letter to your practice/surgery manager and/or contacting your local HealthWatch.

    healthwatch.co.uk/complaint...

    I hope you find the relief you need soon & I am thinking of you

    Best Wishes

    Emma :)

    FibroAction Administrator

  • Thank you Emma after the bank holiday I will go back and see the lady GP there she is so much nicer!

    Thanks again!

  • Small fibre neuropathy is present in approximately 40% of Fibromyalgia

    patient.co.uk/doctor/neurop...

  • 30ml per day is a very small dose not surprising it does very little.

  • Hello Lottieonline,

    I would consider talking to the GP about other treatments from the links I've given you. The risks associated with Morphine coupled with the lack of Opioid receptors in Fibro (meaning Morphine is likely to be ineffective) in my opinion outweighs any benefit you may or may not get.

    I take Pregabalin, Pramiprexole, Venflaxine, Tramulief (Opioid but with serotonin pathway, serotonin is reported low in Fibro) Paracetamol and Zopiclone for sleep. Occasionally a diazepam for spasms and my symptoms are pretty well controlled apart from the fatigue and I am pacing at the moment.

    Have you had bloods taken recently, if your Vitamin D is low this can make symptoms worse.

    Sorry to mention again and you don't need to take any of the advice here as it is up to you what you decided is best for you. I just wanted to inform you of our evidenced based factsheets so you were aware of your opinions. Many GP's & Doctors use the traditional pain ladder for Fibromyalgia but many researcher have realised Fibro needs to be treated differently.

    Please see this post and picture outlining medications effectiveness by Howard S. Smith, MD1, Richard Harris, PhD2,and Daniel Clauw, MD2;

    healthunlocked.com/fibroact...

    Thank You for reading and I hope you find soon relief soon

    Best Wishes

    Emma :)

    FibroAction Administrator

  • Hi Emma,

    I virtually take the same pain melds as you.

    I take Pregabalin, Pramiprexole, Venialic XL 375 a day so the top dose plus a mood stabiliser Sertraline, Shortec 20 & 10mg 3-4 times a day (controlled drug), Clonazepam 500mcg x2 at night

    Diazepam 5mg a day. Plus fentanyl patches 75mcg per hour

    Also lots of other drugs for colitis/Crohns. Plus depression, etc etc.

    I just feel aches all the time fatigue and depressed.

    Now GP said there's nothing more they can do for me, I think I'm going to try acupuncture next??

    Kind regards

    Lucy

  • I genuinely and sincerely hope that your GP appointment went well for you.

    All my hopes and dreams for you

    Ken x

  • I haven't been diagnosed with fibro yet. My GP thinks that's what I have but is waiting for the rheumy appointment in June. However, she said on my last appointment that opioid type painkillers don't tend to work with fibro - I was on codeine and it did nothing (although that is much weaker than morphine obviously). She put me on gabapentin which has, for the first time, took the edge right off. She said painkillers that deal with nerve pain are better?

    I feel for you, I hope you can get something sorted out. It's not fun living with pain day in and day out. x

  • Hi smellydunlin,

    I am so sick and tired of being sick and tired.

    No one can help me, no one, seen so many consultants all different ones all say the same thing, can't help. Try to relax!

  • some people say opiates like morphine don't work for fibro, have you tried gabapentin or lyrica x

  • Yes on Lyrica now is that Pregablin?

  • yes it is, does it help you, your very lucky although its meant to be better than gabapentin, my surgery wont prescribe due to cost, x

  • What they won't prescribe Pregablin? What? Due to costs??

    That's terrible?

    I'd complain.....

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