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The UKFibromyalgia Forums • View topic - New to UKFM



New to UKFM

Introduce yourself and find fellow sufferers in your area or who share the same interests.

Moderators: perseus, *Lisa*, FluppyPuffy

New to UKFM

Postby FerB » Thu Apr 28, 2011 1:17 pm

Hi,

Ive been reading this forum for a while and decided its time I joined up.

I was first diagnosed with FM about 2 years ago and with the help of a rheumatologist, physiotherapist and amitryptiline I recovered after a year - I took myself off the amitryptiline after a while as I hate long term medication.

At the beginning of this year I fell ill again with FM, it is so much worse this time. I am in agony, in a constant fog, need sticks to walk, get chest pains, have rubbish memory and concentration, am constantly dizzy etc. So i finally built up the energy to get to the doctors - I cant drive so rely on lifts. I get less than 5 minutes with the doc, who prescribes amitryptiline, even though I pointed out I had that the first time due to insomnia, Im not suffering from that at the moment and they do nothing for the pain and told me to take cocodamol for the pain. I questioned about the risk of addiction to the codeine and she said that doesnt matter when you have a diagnosed condition?

Is this normal treatment? Looks like Ive got to go another month without help!
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Re: New to UKFM

Postby denys » Thu Apr 28, 2011 1:48 pm

Hi and :welcome: to the forum, glad you decided to join us, the majority of us take meds long term and most of them have problems regarding addiction, try the tablets and if you dont think they help then stop them but you wont know if they help if you dont give it a go :hugs: :hugs: :hugs: :hugs: :hugs:
Denys

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Re: New to UKFM

Postby FluppyPuffy » Thu Apr 28, 2011 1:53 pm

Firstly :wave: and :welcome: to the forum

I can honestly say I've not had any comments made like you've said about the codine and addiction possibilities :dunno: :dunno: Is there another dr you can see at your surgery that might be more helpful and understanding. There are various meds that can be tried tried in different combinations to see if you can find an effective mix that makes a difference to you.

I can understand your reluctance to take meds long-term, I was of a similar opinion in the days pre-FM. Unfortunately, as things have deteriorated since they first started appearing just over 11 years ago, I've had to change the way I think about things, esp in the quest to find some relief from the constant pain.

There is a lot of info and advice on here, hopefully you'll find some of it helpful. And there's usually someone around to answer anything you might want to know :cup1: :cup1: :cup1:


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Re: New to UKFM

Postby shazq » Thu Apr 28, 2011 3:13 pm

Hi
:welcome: When you have a long-term chronic pain condition like fibro/cfs/me you will find that your way of thinking changes, none of us like to be on meds long-term but if they are going to help with the pain and give you a quality of life then the addiction has to take a back seat.

Have you tried a Tens machine? they can help with the pain. or a wheat bag.
Give the meds a try and if you find they are not strong enough then go back to see your gp and ask for something stronger. :hugs:
Here is a link that tells you some meds used for fibro.:- http://www.nhs.uk/Conditions/Fibromyalg ... tment.aspx
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Re: New to UKFM

Postby Adele » Thu Apr 28, 2011 3:52 pm

i told a pain consultant i was concerned about addiction. he said it wasn't a problem as i wouldn't be coming off the painkillers. makes sense to me.
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Re: New to UKFM

Postby budda » Thu Apr 28, 2011 3:53 pm

Hi and :welcome: to the forum, so glad you have come to join us. :flowers:
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Re: New to UKFM

Postby Ldyalb » Thu Apr 28, 2011 11:26 pm

Adele makes a good point.

I was concerned about the side effects I get, I'm coping fairly well with ami's, paracetamol and occasional diclofenac but when I was on dihydrocodeine, para's and diclofenac I had to take additional meds to treat the side effects. So far I don't need those very often but my ami's are being upped in a few days so let's see how it goes then. My GP just said as long as the side effects aren't worse than what they're treating then they'll keep me on them.

I can't imagine ever being med free, even between my first (relatively mild looking back) flare and my 2nd nasty one which gave me the diagnosis I was still on paracetamol pretty much daily.

Meds can be changed though, if you try something that doesn't help you can always try something else, everyone reacts differently to different meds and different combinations :goodluck1:
'Think of all the beauty still left around you and be happy' - Anne Frank

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Re: New to UKFM

Postby FerB » Sat Apr 30, 2011 11:19 am

Thanks for the replies.

The doc did say to go back in a month if it wasnt working so Ill give it a try. I dont quite understand how often to take the cocodamol - do I take it every time I feel the need for a painkiller (obviously not going over the recommended dose) as they dont appear to have any affect on the pain.The doc just said to try them long term, not how many to take.

I think I was surprised that it was just assumed to be a flare up and no tests were done to check it wasnt another condition or illness, I didnt even have chance to tell my symptoms, it makes me wonder how many fibro sufferers have undiagnosed conditions.

I see the point about addiction not being important as you wont come of them - makes sense. I tried a tens machine but I found it quite painful, I do use a wheat bag though.

Thanks again for the replies, think ill try and get out into the garden and enjoy the sunshine while it lasts!
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Re: New to UKFM

Postby Ldyalb » Sat Apr 30, 2011 1:32 pm

FerB - (love your name btw)

I would call your GP for advice on Tues re: co-codamol.

I find that taking the paracetamol fairly regularly (usually 3x a day so not quite the max dose) is more effective than only taking it when very bad, with chronic pain I find a regular dose works better than just 1 dose 1 day, 3 another, 4 another etc. If I only take 1 dose of paracetamol on a good day I find the next day is usually bad so on good days I still take 2 doses, 1 in the morning and 1 in the evening.

Obviously co-codamol are different and stronger so my advice would be to call your GP on Tuesday morning and ask for clarification :)
'Think of all the beauty still left around you and be happy' - Anne Frank

TMJ, RLS, HMS, Fibro, Dyspraxia - ASD + Dyscalculia overlap, Eczema + Rosacea + suspected Psoriatic Arthritis.

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Re: New to UKFM

Postby dan.1 » Tue May 03, 2011 10:27 am

hi and :welcome: i take my meds when i should never miss any cause if i miss the pain grips me and can be down for days as this last week even my meds arnt takeing all the pain away, its lightening the load shall we say,if you arnt happy with ye meds they is others doc can put you on,i take 500mg tramadol a day,2 amis at night,and 4000mg paracetomol a day not all at once better type this way.you will get the rite combo soon as i will my doc thinks its a pick n mix counter lol so just stick with it and dont be frightened to tell them if you arnt happy with anything and work from there hope you get sorted soon :goodluck1:
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Re: New to UKFM

Postby Annafaith » Tue May 03, 2011 6:54 pm

hi and :welcome: so happy you decided to join the forum,
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New to UKFM

Postby Niki d » Tue May 03, 2011 9:11 pm

Hi Dan,
Does your gp say it's ok to take 500mg of tramadol, cause my gp will only let me take 400mg, she says that the maximum dose.
Some times I feel if I could take one at lunch time as well as two at night and two in the morning it would just top it up in between. 

Hugs niki 
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Re: New to UKFM

Postby Schnoodle » Wed May 04, 2011 12:08 pm

hi ferB welcome to the forum xx
Diagnosed with severe fibromyalgia/cfs febuary 2009.
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Re: New to UKFM

Postby budda » Thu May 05, 2011 5:18 pm

:wave: Hi to everyone and :welcome:
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