Treatment options in UK?

[Beckiebrady87]

I'm struggling to find a treatment that helps with my fibro. Can people tell me what works for them? If like to know what I could request a referral for from GP in UK. Thanks

[TheAuthor]

Hi Beckiebrady87

I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance. I have pasted you a link to our mother site, FMA UK which hosts loads of useful Fibro information:

fmauk.org/

The problem with Fibro and treatments is that everyone's Fibro is a tad different and then we all respond differently to medication. I always think the best place to start is with a Rheumatologist referral (unless you already  see one), and then maybe a referral to a pain management clinic. I know of many members who have undergone a course of CBT (Cognitive Behavourial Therapy), and some have had Hydrotherapy and Physiotherapy.

I have perosnally undertaken Physiotherapy, and still do my gentle exercise regime on a daily basis. I find it useful unless I am in too much pain to start with or if I have bad fatigue.  

I personally take Pregabalin, Nortriptyline, Nefopam and Cocodamol for my Fibro, and other medications for other illnesses. I know that many members on the forum are on the same drugs as myself, but they say that they do not really stop the pain and I have to concur. I also use a TENS Machine, which I do find very useful at taking my mind off the pain.

I want to genuinely and sincerely wish you all the best of luck, and please take care of yourself.

All my hopes and dreams for you

Ken

[Beckiebrady87 in reply to TheAuthor]

Thank you for your reply Ken. I've seen a rheumatologist and attended a pain management course. I've tried loads of pain meds but not found one that works and I've now been told there's nothing more to try. I've looked online and it seems that USA offer so much in the way of treatment so I'm curious to see what others have accessed. I will go back and enquire about hydrotherapy now.

Thank you

[TheAuthor in reply to Beckiebrady87]

Good luck

[tiredofmoaning]

There is a unit in guys hospital that is especially for fibro, I have heard a lot of good things about them on this very sight. Good luck with getting some help. If you go there .

[Beckiebrady87 in reply to tiredofmoaning]

Thank you. Where is guys hospital? I've not heard of it before

[Beckiebrady87 in reply to tiredofmoaning]

I've found the website and drafted a letter to my GP requesting a referral. Thank you for this info!

[Beckiebrady87]

Yes, I was diagnosed a few years ago and have seen many specialists since. I just haven't found a treatment that works as yet. 

Thank you for your reply

[hgrimmer]

Hello Beckie, 

pregabilin and Duloxitene are my pain relief.......... and a lot of rest!!!!!!!!! I hope it works for you. Keep me informed if you like!

Heather x

[Beckiebrady87 in reply to hgrimmer]

Hi Heather, I've tried pregabalin and gabapentine but apart from helping with restless legs they did nothing for the pain and made me light headed and dizzy. I'll look into duloxitene though.

Thanks

[Hidden]

Hi,

Sorry to hear your news.

I'm afraid that many doctors don't know and can't give you some of the meds.

You can ask for a 2nd opinion.

I had to pay £200 for a private consultation, as my doctor said that on nhs it would take too long (maybe a year), to see someone and even then it might not be a consultant who was good on fibro. The private dr referred me to a neurologist (a woman who did seem to listen and was looking at her pen and hugging a radiator), not a very inspiring or confidence building experience. He also wrote to my dr and suggested meds I could try. My dr is just in the dark as to what to do. It seems it's up to us sufferers to go on the net and investigate our options.

Maybe it would be a good idea to follow the instructions on web and get them to send your dr an information pack?

I hope that someone on the forum can give you more positive help...sorry.

I hope it goes well for you. Take care and best wishes.

[Beckiebrady87 in reply to Hidden]

Sorry to hear you've had a negative experience too! It does seem like fibro suffered need to take their treatment plans into their own control and Haskell GPs into referrals.

Good luck to you too

[Hidden]

Hiya Beckie,

I've been troubled with fibromyalgia and chronic fatigue syndrome for a number of years now, I was on high dozes of Tramadol (normal pain), Pregabalin Lyrica (nerve pain), Mirtazapine (sleep & pain) & Celecoxib (inflammation)

I started off on lower dozes and over a few years increased up to maximum, I have now also been prescribed BuTrans 7 day pain relief patch 20mg/hour and am into my 3rd week with it, some days are better than others and the meds seem to take the edge of the pain although sometimes I wonder if it's worth taking them all...

Perhaps this may be of some help to you and I wish you all the very best...

God bless you

Hugh

[Beckiebrady87 in reply to Hidden]

I've not heard of a pain relief patch do thank you for mentioning it.

Good luck to you with your condition

[peck]

Hi and welcome yo our forum.I am from the US and I find that Oxycodone helps alot.I don't recall seeing anyone from UK that takes this (not sure) I tried Lyrica does not help me.Good luck.Peck ☺