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Fibromyalgia Action UK
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Help needed

So just been doc’s having a bad time in pain really bad. Was on Tramadol but pAin clinic are taking me off them. On slow release tramadol which does nothing really as pain still breaks through. Went to docs today asked for some help. OMG doc : what do you think will work

ME: when I’m like this a dose of diazepam

Doc: no you were prescribed that 18mths ago I am not prescribing that

Me: please help

Doc : I can t think of anything to help you sorry.

So basically when I finally stop tramadol I have no pain relief and doc won’t give me any. When I suggest something that has worked I even said prescribe me just one for today as it’s so bad, no nothing I can do. I am really loosing all hope here. My MH probs -BPD - psych doc has stopped all meds also so I am now going to be without meds. I don’t what to do please can anyone advise xx

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This is truly awful. I don’t understand why docs seem to be all of a sudden stopping meds. You have medical problems, what 'they' have diagnosed as such and prescribed accordingly and now they expect you to do without. I really don't know what to suggest apart from try see another GP? X

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Hi as kookeeM says and it is bad this. I personally would not go back to pain clinic they are meant to work with you and wot you want out of it .you have to get pain relief if you are in pain crasy this will just result in more gp visits .I do understand the diazepam though they are a bit harder to get long term .hope you get your pain relief to help you get your pain under control

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Is this a new move by gps? I had an awful experience when registering with new gp as I have moved counties. She was exactly the same wanted to stop everything I take. These pain meds are in nhs website for fibro. I didn’t go back and have registered with new gp surgery. She commented we need to be finding “better ways” to manage your pain hmmmm

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Hi i would say deffinetly it is happenning everywhere even the nurses are trying .and lots of gp surgerys getting wellbeing teams in .they tryed it with me got tramadol taken off me .now got pregablin increased when your a bit stable meds should not be messed with

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How can I deal with it I see my new gp has put my tramadol on repeat so that’s a relief but .... what other pain relief might they try

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You can get a few to go along side tramadol if doc says yes. dyhydracodine. Co.codamal. paracetomel (helps others work should be first line ) fentynal patch naproxan or ibrufen an antidepressant etc there is more see wot doc says .

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Feeling worried

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It seems to be different wherever you are, I stopped taking tramadol on my own as I was worried about getting addicted, pain then increased but I put up with it for awhile, back to GP & she immediately said you must go back on the tramadol if it helps & said it really was a great drug as long as used sensibly & monitored. So I am now on pregablin & slow release tramadol with my gps blessing!

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When I went to pain clinic they took me of tramadol too .I had awful withdraw symptoms. When I saw my Rheumy he put me straight back on them .he also told pain clinic not to withdraw any of meds without contacting him.i never went back to pain clinic it was useless .Amy ps ur gp should have took u of them slowly with support

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Someone once recommended taking paracetamol alongside the Tramadol. (keep to correct dosage) I hadn’t found relief with Tramadol or paracetamol so was a bit dismissive but I have to say as a combination it really worked for me.

Fibromyalgia is different for everyone, but worth a suggestion and I hope it works for you.

I am extremely lucky and a chiropractor that suggested Turmeric to me which I have now been taking for around 10 years and have had phenomenal benefits from it, as have many others I have known. Thankfully I have a very supportive GP who works with me on increasing/reducing meds as my needs change.

Good luck as no one should have to suffer the way it sounds like you have had to.

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Hi, do you take turmeric powder or in tablet form

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I take the tablet form Mydexter, but also use it in cooking/ food as much as possible.

I had to stop it prior to elbow surgery and was shocked at how quickly my Fibro symptoms came back and within days eased off again after restarting.

It wasn’t placebo effect as had a situation over one Christmas where out of usual routine I forgot to take them and couldn’t work out why symptoms were so awful until I twigged I hadn’t been taking the Turmeric! Doesn’t stop occasional flare up if over stressed or over tired, but learning to recognise my early warning barometer symptoms (for me it is aching around my wrists or ankles), if I immediately act on it to rest, the flare ups then tend to be much shorter and less severe for me.

Worth trying to work out your early warning signs.

Like they say, if you listen to your body when it whispers, it won’t have to scream!

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Hi there, to be honest I would love not to take meds of any kind like so many of us. I have fibro but also suffering from severe knee/back pain which affects my walking and was told by physio there was nothing he could do only pain relief.

I see a really nice pain clinic consultant and I gave up pregabalin and also amitriptyline myself due to side effects though they helped for a little while but was delighted to get off them, as was my Consultant. To be honest he doesn't like his patients on lots of meds but I am at my wits end at times more so with the knee and back condition just now, but I really don't think he knows what to do for me.

I was the one who suggested maybe slow release tramadol as a friend had suggested it may control my pain better (he hasn't got back to me yet about this) and I would take anything at times when pain is so bad. I spoke to him in 2017 about CBD oil but he didn't advise that but I took some anyway and it helped a bit at the time but my condition has got worse. I have just recently started on it again at a higher strength and he is now happy for me to take this. Dr's now realise some patients are getting relief from the oil without the side effects of medication.

My friend is a nursing sister who has seen me having some really bad days with pain and she told me to take 2 paracetamols along with the tramadol. I told my Consultant last year 1 x 50mg Tramadol 4 times a day wasn't helping me and mornings are particularly bad, so I asked if I could take 2 tramadol together morning and night and he said that was fine.

I had been having really bad flare ups also but he said anything he gave me wouldn't be without side effects, and I then asked him if when flares are really bad could I possibly take another 2 tramadol in the middle of the day. He allowed me to do this at bad flare times only, and I only take when absolutely necessary.

My friend's suggestion about taking the paracetamols along with the tramadol has really taken the edge of the pains when it's particulary bad. Paracetamol on it's own does nothing for me but she says it boosts the tramadol. I don't know why my Pain Consultant didn't suggest this? On reading a lot of posts on our site it seems that it is us patients that are having to make suggestions at times about what medications etc., we could try or is it just me???

I agree with many of you regarding "Chellebooka40's post" that you need to be weaned off meds. I stopped pregabalin suddenly and felt fine for just over a week till I was rolling about with sickness and stomach pains for 3/4 days. I never thought for a minute it was due to stopping these meds or going "cold turkey" as the A/E Dr advised. I never realised how potent these were. I had to go back on them at a lower dose and slowly wean off. So pleased Turmeric is helping you, I have tried it but haven't really noticed any changes unfortunately as would be so much better than taking meds!!!

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Hi 1499, so sorry to hear you are having such an awful time of it. Pain can be so wearing. I agree totally with your comments about why on earth medics don’t suggest the simple ideas like the Tramadol and paracetamol at the same time and more importantly the why! I also heard from another patient that the paracetamol enhances the effect of the Tramadol. There are times we need meds and flare ups are certainly those. I hope you are able to see some easing of your symptoms soon.

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Thanks for replying keep well!

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Thanks for your reply, so glad that it helps you, I've been putting turmeric in my food for a few weeks ever since I fell and broke my wrist which sent my arthritis/fybro through the roof and I do think it helps, if you don't mind what dosage do you take and where do you buy them from

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Hi Mydexter, I have taken various ones over the years. Most of the time just the own brand version from a High Street health food shop (not sure if we are allowed to name shops here but I usually bought them in bulk when they have their penny sale!) I took 1-2 tablets twice a day.

I have more recently started buying online a High potency one twice a day tablet with a subscription for monthly delivery. To be honest I haven’t noticed any difference between the 2 versions. Consistency of taking it seems more important in my personal opinion.

I worked very closely with my GP after having taken the Turmeric for some weeks when I looked to reduce my meds and only reduced in the order and dosage recommended by him as I didn’t want to risk flare ups.

As I said previously, our bodies are all different, but so many of my friends have noticed a difference when they took it that I felt it worth mentioning.

Good luck

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Thanks again, very interesting😃👍

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I suggest asking for SR Tapentadol/ Palexia 50mg and non SR 50 mg version. Celebrex is also worth trying.

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My Gp changed me to the slow release Tramodol which I take last thing at night and it enables me to get out of the bed the next morning. He also suggested taking paracetomol alongside if needed, which I also think helps. On really bad days though I have a suply of the normal tramadol which enables me to top up in the afternoon. He advised I try to avoid taking the extra, and obviously I don't go above the top dose allowed, but thankfully he trusts my judgment enough to give me the opportunity to be able to do so. As Tramodol is the only thing that helps, I consider myself fortunate but can't help worrying about long term effects.

I hope you find some better support.

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I had similar the pain clinic said pain killers don’t work for chronic pain 😳I said are you in chronic pain he said no...

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