Treatment

I was just wondering what treatment everyone was on? Iv had Fibromyalgia for near 7 years now and I have never found any treatment at all that has worked! My gp told me she didn't know enough about it so I mentioned amitriptyline which I had been on before about 5 years ago. All it done then was make me sleep for over 17 hours and I was still drowsy after that but I thought maybe with age I would be able to use them now but I was wrong! I have been without medication this whole time and lately I have been having such a bad bout that I am really getting so down about it! It's stopping me from being the best mummy I can be! All I want to do is sleep as I am so tired and I am in so much pain all over :( any help will be much appreciated. Thanks in advance.

23 Replies

oldestnewest
  • This is a difficult one to answer as we all react in different ways, I'm sure someone will come along with good information, this is a very supportive forum. Lou x

  • So sorry you are in so much pain and totally exhausted of course the pain itself can make you feel absolutely drained. It is difficult to give any advice without knowing what you have tried before. What sort of pain are you experiencing as different pain killers work on different types of pain and as you have found everyone reacts differently to medication?x

  • I am literally in agony all the time if it's not my lower back and thighs it's my shoulders and my arms! I have tried amitriptyline, lyrica and a few others but I can't remember the names. They even gave me sleeping tablets just to try and cut the pain a bit. I get awfully agitated for no reason and I'm starting to get really muddled up and forgetful over silly things as well but I'm not sure much can be done about that x

  • Hello xxmummybearxx,

    Welcome to the FibroAction Community!

    Many members that join talk about medications & treatments, so we've written a FAQ post about all medications, complementary therapies etc to answer this effectively. It has loads of link to our website which has evidenced based factsheets on Fibro that you can download & print to take wit you to discuss with your GP.

    In some way the honesty of your GP is quite disheartening as they are not understanding of Fibro as maybe you'd like but on the positive side the humility of their honesty means there is an opportunity for learning & knowledge. I think it may be better than others who say it's a wastebasket diagnosis!

    FibroAction has the Information Standard Certificate as does the NHS, here is our website link & the NHS link about Fibro;

    fibroaction.org

    nhs.uk/Conditions/Fibromyal...

    Maybe you can discuss this information with your GP and/ or ask for a Pain Clinic referral to talk about a medication review.

    I am happy for you to read my profile by clicking on my name you'll see all the medications & read more about me if you like! :)

    Hope this helps

    Emma :)

    FibroAction Administrator

  • Thank you so much!xx

  • Hi xxmummabearxx

    Welcome to the forum and I sincerely hope that you find it useful, informative and loads of fun. I am so sorry to read that you have Fibro, and I genuinely hope that you can find some combination of medication and treatments that really work for you.

    I personally take quite a lot of medication due to other illnesses as well. Including Pregabalin, Nortriptyline and Co-Codamol for my Fibro. I always say to members that what works for one person may not necessarily work for another, it is a question of trial and error with drugs.

    All my hopes and dreams for you

    Ken

  • Thank you :)

  • I've been given a tentative diagnosis of fibromyalgia and am still in a process of trial and error with medication myself.

    I'm currently taking *Deep Breath*

    600mg gabapentin 3xDay

    Max paracetamol 4xDay

    Max ibruprofen 3xDay

    20mg baclofen 3xDay

    100mg tramadol 4xDay

    60mg Duloxetine 2xDay

    10mg nortryptaline at night

    I'm still not pain free and when I get an episode of more severe pain I'm in total agony. I use all the usual warm baths, relaxation, hot water bottle, attempts at exercise etc but finding a balance is proving very difficult. And I take all meds all the time so don't have anything to top up on. I did have diazepam previously prescribed before a lot of the above were prescribed which were perfect but I can't seem to get them prescribed and im lectured every time I request about how they shouldn't be given long term as they are addictive.

    My GP has seemed seemed quite content upping doses and adding more and more meds to the list. But I think now I'm on max everything and she's come to the end of what I can be given. I'm not back at pain clinic until June but I'm seeing a clinical psychologist and physiotherapist in April to look at chronic pain management course but I don't know what to expect from that.

    Any insight into my meds and any suggestions for swaps or changes greatly received. I now have no clue which medications help and which ones don't now but I dare not give any up for fear of serious lapse! I'm not feeling high/drowsy/sickly on these meds the only problem I have is grogginess from nortryptaline. I have to keep telling the doctor that I'm not trying to get stronger or more medication to abuse them Id just like to be pain free!

    So, there's my story! Not sure if it helps much. I've also had the most horrible 2014 and a stressful 2015 so far.

  • Oh my goodness you must feel like you run a chemist with that amount of medication! I personally feel like my doctor thinks I'm just wasting their time! Wouldn't it be so nice to wake up pain free for even one day! Thank you so much for replying to me and I really hope you get the help you need!

  • I rattle when I walk 😂😂😂 ha ha and no problem, happy to share and support, hope you get sorted too - don't give up x

  • Hi

    You could ask your GP about two of the FDA approved drugs for fibro, such as Pregabalin and Duloxetine.

    Try an NSAID such as Naproxen or the stronger Meloxicam.

    Alternatively look at the range of topical medications such as Capsaicin cream or Voltarol 12 hour gel.

    Ask for a referral to a pain management clinic or try an alternative therapy such as acupuncture or Bowen therapy.

    Good luck.

    Mark

  • Thanks I look into these :)

  • I've never been given pain meds - or any other meds - either. I did try amitriptyline briefly for the nerves in my legs (numbness in feet and legs) but had a bad reaction so my gp told me she wasn't willing to prescribe anything else. My rheumy has now asked gp to start me on gabapentin, but I'm having the worst luck trying to get an appt, so it will be a couple of weeks now until I actually get to see the gp. I'm hoping the pain management clinic will be better for finding something to help me.

  • I'm reading this interest. I'm still undiagnosed after months of pain, numbness and tingling, I'm awaiting an appointment with a rheumy. My GP has refused to prescribe anything but co-codamol which do nothing. She says she doesn't want to prescribe anything until they know what's causing the pain. I suppose my pain is not that severe and not widespread - mainly my arms which feel as if I've been arm-wrestling and my hands which I can't straighten or make into a fist a lot of the time. My legs are intermittently shaky. My boss is on amitriptyline for pain and cannot understand why my GP hasn't prescribed that. I'm very drug intolerant though - I can't take ibuprofen or aspirin as they make me ill. No-one has suggested baclofen or gabapentin - my GP told me that my pain wasn't 'severe enough' as I was walking around!!! LOL. My right arm constantly 24/7 feels as if it's being stabbed - I only notice it now if the pain goes away - i.e. when I've had alcohol (the only drug that works - but that's not good eh?). Sending hugs to all x

  • I really feel for you! Iv only started getting pain in my shoulders and arms the past few months and I would take the back and the leg pain over it any day! It's disgusting that the doctor won't even work with you to try and find something! I had to go to the doctor every week for them to push through a diagnoses and I am to this day still treated like I am in the way! I went to the doctor a while back as my hands have started to get sore and they told me what did I expect when i have Fibromyalgia I should be used to things getting sore! This is why I am trying to do my own research and see what helps other people! I hope you get the help you need too :)

  • Yes, my doc doesn't seem that interested, it's took me 6 months to get an appointment with a rheumy. Originally I was sent to a neurologist after having dizzy spells, blurry vision etc - had MRIs and a spinal tap - this showed inflammation of the spinal cord, but they don't seem interested and the neuro passed me back to the GP and its taken me about half a dozen more appointments to get a rheumy appt. I wouldn't be surprised if I get passed back to a neuro...

    I'm glad my legs aren't bad - my right leg aches sometimes and my right foot goes numb but I'm grateful that I can still walk without a stick - after reading some stuff on here I count my blessings. x

  • It makes you feel lucky when you see what some people do go through :( I myself have ended up in bed for days not being able to walk but for me the worst part is being agitated and forgetting things like when did I turn the heating on or why am I at the shop? It's an awful illness and it's even worse when you feel like your in it alone because no one really knows much about it x

  • Yes, my brain is often foggy. I forget where I parked my car, so I have to park it in the same place thereabouts when I go to the supermarket. I also forget what I was saying when talking to people. I've been lucky, I did a sponsored walk last week and it's one I do every year for a cancer charity. the last few years I've sprang round and not thought anything of it - its just over 3 miles. This year I really struggled and had to stop half way for a cup of tea. I managed it, but very slowly and the next day I was in bed. It kind of shocked me how much I'd deteriorated in a year, but... I managed it and I was pleased with that.

    Take care x

  • You should be proud of yourself that you still managed to do it! We live the snails motto we may be slow but we will get there :) x

  • Yes, precisely. I used to be very active, jogging, swimming, going to the gym etc and when this fibro or whatever hit me (especially the fatigue which I find the worst of all) I got angry and tried to keep going and deny I was ill. Now I just slow down and go to bed if necessary. I've had to re-evaluate things. I went up to the shops today, stood in a queue and walked home (just half a mile all told) but was proud that I didn't feel faint in the shop or have to sit down. :)

  • I have had many medications but never found a good one. Tramadol has just been given to me making me light headed at the moment giving one month to settle

  • have you tried the homeopathy medicines?

  • I take Gabapentin & Co-dydramol

You may also like...