Any advice gratefully received..

Posted , 9 users are following.

After not really getting anywhere after my diagnosis ,I paid to see a pain management consultant,who deals with Fibro,in the hope of getting some options.

She was very good,but basically I have been referred back to my go,with her suggestions.

She has suggested Pregabalin( have I spelt that right!) Trigger point injections,and intravenous infusions. It is up to me and my go as to which,if any we try.

Initially I was so pleased to have someone care and be interested in helping. So on Monday I go to my go.

Thing is unless I go privately( which I don't want to really the two later options would mean a referral to the pain clinic and a very long wait.Trying the tablets makes most sense,but I am really worried about it as I'm very sensitive to drugs,I invariably get bad side effects. She suggested starting me on a child's dose for 5 days and then increasing.

Anyone who has this condition will understand that the one thing I fear is taking anything at all that makes me feel worse than I already do!

All I take now is a codine at night( no good for pain but helps sleep) and ibruprofin,not much use either!

I'm scared of anything making me more tired too.

Anyone take them ? Or any thoughts,I'd be really grateful to help me decide?

Also why do they prescribe anti imflammatories,and people try anti inflammatory diets, if there is no inflammation in fibromyalgia??( just curious on that one!!)

Thank you.x

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  • Posted

    Hi Lynda, you make some very interesting points.  I got told by my GP that anti-inflamms (NSAIDs) are useless with fibro as you say its not an inflammatory condition, its purely pain signals from the brain.  I also sympathise re taking so many meds that cause there own issues - I refused anything with codeine in as it makes me so ill I feel worse on it than without it.  The opiates like Tramadol all have nasty side effects and are addictive.  I have wanted to find out for a while whether post fibro diagnosis the treatment is any different (more importantly 'better') than pre-diagnosis.  My GP group practice are rather against labelling anyone with a fibromyalgia diagnosis but in truth they seem to be treating the issue the same regardless.  To be honest none of the treatment options seems to be very effective - I do get the feeling that it's rather a don't know treatment plan and let's see if this works etc etc., without any real interest from the medical profession in finding a truly effective answer.  On the basis that like you I dont have a good time with pharmaceuticals and the feedback on here and other forums indicates a lot of the meds dont really work that well anyhow for fibro, I've been looking into other ways of reducing pain.  I'm trying meditation presently - with elements of Mindfulness for pain relief - which was developed in the US specifically for post operative pain.  Early days but it really does seem to help. Stress seems to be a major factor in the onset of fibro but I dont want to go down the route of say SSRIs (citalopram, prozac etc) as they caused me horrible issues previously so hopefully the meditation and gentle exercise like swimming and chi gung will help with that too.  I guess all fibro sufferers, me included, must feel a bit like the forgotten army - fed up with hearing 'we dont know what causes it we dont know how to treat it and between the lines we think youre exagerrating but here's a pill now go away and stop bothering me'....sound familiar?
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    • Posted

      Thank you for replying. Oh yes indeed it does sound familiar!! I do use a hypnosis tape daily,it doesn't do a thing for pain levels,but it does help with the mental side of this.
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  • Posted

    Hi Linda, yes it is very confusing, but that's fibro for you,

    I've had it for many years and I'm now in my late 50's and getting much worse,

    I saw my consultant last week who admitted there is noting they can give to make it go away it's just trial and error

    I had nearly six months off work with a huge flare up and Gabapentin 400mg x3 and Brufen retard 800mg got me back to work

    I still take Gabapentin and Hydroxychiloroquine sulphate x 2

    To keep me ticking over but I have just come out of another big flare up

    I just ride along with them these days the pain never goes away it just settles on times or moves somewhere else,

    I'm actually feeling good right now, ( still in pain but bearable )

    I believe it's because I've gone Gluten free and almost wheat free for 5 weeks

    I know they say it can take six months but what a difference already

    I also started magnesium and B12 at the same time

    I'm trying to cut down on my coffee intake,I'm finding it hard but it will really help,

    I really don't have any answers for you sorry if I did I'd use them for myself and everyone else on here,

    Hope you find some relief soon

    But don't waist money if you have to wait so be it because if you pay they will only send you back to GP

    Chin up positivity at all times even though it hurst like hell

    Light excesise is good to, I forgot to say I've just got my Powerplate back out to tone up but it seems to help with my neck and shoulder pain

    Gentle hugs being sent.

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    • Posted

      Thanks x.Sometimes it really helps to check in here,it makes you realise it's not just you! ..But don't you just get sick of it?!!!! One of the hardest things about it is not getting depressed,the tireder I get and the more it affects my head ,the more I'm prone to it! X
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  • Posted

    Hi Lynda

    You are not alone.  Here on this forum we all understand each other and the pains. I personally don't like meds. I am trying herbal remedies which are in the early stages which are part of ayruvedic treatments.  I will report back soon to all, but have found some relief.

    I also have been on CBT ( Cognitive Behaviour Therapy ) which was arranged through my GP and found this method of Mindfulness very helpful, although it hasn't taken the pains away but helped with the daily thought process in how one goes about their daily routine. It reminds me that I need to take breaks and to live the moment and enjoy the time and experience of that day and NOT to be a robot to try and complete everything in one go. We all do it !!

    I have learnt to deal with a day at a time and live for the moment !!

    Hope you have a great day too !!

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  • Posted

    Have you read the posts on LDN? 
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  • Posted

    Hello lynda,

    This is such atricky condition, and what works for one doesn't work for another. So what to do? I do think there are people on truckloads of painkillers, and they are still in pain and still tired. Or they are putting up with horrible side effects. From what I have been advised by the pain clinic I attend, meds are not the answer! They advocate pacing, listening to your body. CBT, meditation, mindfulness - lifestyle changes and changing your thinking - this is the new normal. Hard to accept I know, sorry I couldn't be more helpful.

    Take care, Anne

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  • Posted

    Hiya Lynda. Amithriptilyne is  the only med I take for Fibro...gives me a great pain free sleep..- no pain..still feel a tad drowsy waking up...but that sleep is what makes this Fibro manageable for me..only get flare ups now..once  it was just constant  pain almost everywhere and sleepless nights..I take it 7pm before bed..it really does work wonders ( for me..that is,) we are all very different..I take 25 mg...never had it increased either ...started on 50mg but I was like a zombie...all the next day..dropped to 10mg for a while-still not too good but 25 mg is perfect for me..it is actually an antidepressant that works excellent for pain..it numbs the nerve ends and stops the pain from jumping on to the next nerve..hence a very painful body...the antidepressant is probably a lil bonus as most of get depressed from time to time..yes it does knock me out to give me that great sleep which is just sooo needed, to be able to deal with the pain etc the next day..but once I'm up and dressed..I'm fine.....Its great...16yrs down the track..have to be woken up in the morning..but once up and about I'm just fine.....when I was first on them I was like a zombie..but it's like a miracle med for me... it takes a while to settle in. ..also, please remember that less stress is the key to Fibro....be blessed..have a lovely day..:-) xxx

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    • Posted

      Thank you to everyone,I really appreciate The advice,as I feel like I don't know which way to go on this. I was initially out on Amithriptilyne Christine at 10 mg . Ended up with very severe dry eyes and palpitations( as I've said it doesn't take much,and bizarrely I got the anti depressant effect kick in at 10mg,which one doctor told me was like saying half an aspirin works for a migraine! In other words I was mad or lying!)  To be honest the Pegabalin idea really scares me,but I have family and friends who seem to think along the lines" try it ,it might work". I know this is true, but ( if this makes sense?) this awful I know and recognise,but with drugs it can be a whole new awful!

      thanks everyone. X

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  • Posted

    Hi lynda, I am on Pregablin 25mg and so far they haven't helped me. I started on them last year and they made me a bit groggy so i stopped after a few days. Then 2 weeks ago I spoke to GP and so tried them again ...just one in the morning, cocodomol through the day and an Amytriptiline at night well half of one actually so 5mg.... the pregab doesnt do anything at all....I was taking it alone until I realised (spoke to nurse) that I should be taking it with cocodml...no wonder I was still in pain. Anyway I dont see the point of taking it if there are no real effects. Even the Amytrp made me shouty and moody. The only thing I dont have a reaction to is cocodml so I am back where I started. Am due to discuss this with GP soon.

    Long and short is that all react differently so everything is trial and error. I hope you find it works for you, good luck Lynda.

    Angie

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  • Posted

    Hi ive just been diagnosed with fibromyglia ive been in terrible pain for a long time been on morphine and napain now been put on pregabalin today its going to take a while for it to work on a low dose go back in a couple of weeks to up dose
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