Fibromyalgia Action UK
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Fibromyalgia

Hi everyone I have had fibromyalgia for a long time .just wondering if there is any clinical trials in liver pool or near by.

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Hi tommo22 welcome to our wonderful forum ☺ I'm sure you will come to find the forum invaluable in chatting to others who are going through the same experience as you, talking to others at different stages of their lives with Fibro and learning from their experiences.

It does help with the whole process and I wish I had found the site years ago. I have had Fibro for nearly 30 yrs and I'm still learning about it, like we all are.

Please do go look at the mother site where you will find all the information you need and lots of useful links on Fibro and I look forward to chatting to you on the forum.

fmauk.org

Peace, luv n light

Jan xx

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hi jan nice to meet you if you dont mind me asking what medication are you taking at the moment.

Im on amitriptyline 25mg at the moment it doesnt seem to be working as i wished

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You too ☺ Yes i take amitriptyline 50mg at night, I used to take 100 at night but I have reduced them. I sometimes take 10mg in the morning, depending how I feel. I have slow release Butrans Patches, Quinuine Sulphate, Pregablin and i take Codiene at night & if I'm in a lot of pain.

Amitriptyline can be increased, it does help but you get used to taking it & if it's not helping, it's probably because it needs to be increased slightly until it is more effective for you.

It is widely used to treat Fibro because it helps relax your muscles, therefore help cramps & twitching helps sleep & -improves your mood also.

It also can take a few weeks to start to feel the benefits from it.

Hope this is useful

Luv Jan xx

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Hi tommo22 and a warm welcome to our friendly fibro forum where you can find advice, support, help and understanding.

I have had a little search for any clinical trials in your area and I think you may be unlucky. The only one I have found so far is in the West Country:

nhs.uk/Conditions/Fibromyal...

It may be worth looking at the NHS website from time to time for future trials.

There are a lot of fibro sufferers in the UK and I have heard of ongoing research in the hope of understanding it better.

Kay

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Hi kay,

thankyou for replying hope we could chat some time

tommo

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Hi tommo22

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 do not know if this is still functioning but the University of Liverpool were running a study of Fibro patients. I have pasted a link about this below:

fmauk.org/general-articles-...

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

All my hopes and dreams for you

Ken

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Thankyou for the link ken i hope to talk soon i will follow the link you have gave

tommo

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Good luck my friend.

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I'm in australia and just been referred to a public pain clinic in a hospital that has a trial for FM using transcranial stimulation and ketamine! I personally would manage 5 days on the ketamine drip than 30-40 1/2 session of TCS!

It's all up to the SPECIALISTS! Some that think are Gods and you should bow at them (apologies for any that may be in this group) I recognise not all are the same, I've had bad luck except for my psychiatrist who is so beautiful and caring. I think she wanted to be a psychologist but maybe she wasn't allowed bc her manner is so different. She never rushes me and she's mostly late but doesn't worry bc I know she's not counting the minutes!

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good luck with the test i hope to hear how it goes

tommo

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Have you tried to google 'trials for fibro'? In australia we have a website called 'pain' or something like that and has info re trials.

If you're thinking of something specific, you could look under the pharmaceutical company or the device for example.

Here they're starting to use transcranial stimulation sessions which some people found useful with depression.

The other treatments are ketamine infusions as an inpatient for 5 days and I've been told that a few different things could happen:

1. Nothing

2. Some improvement in pain

3. Grear improvement in pain for months and even years

4. No more pain!

I'm hopeful it will work for me! Some days I'm exhausted from coping with the pain and I feel my life is not worth much and have passive thoughts of dying in my sleep so it ends!

I would never act on this! I care too much about the people that love me even if they forget to stay in touch or can't see how I really am.

I'm procrastinating right now getting into ripping the carpet off 3 bedrooms I have left.

My hands are burning from the pain of just typing. No numbness today!

I'll have to put on a numbing/OTC cream and 2 pairs of gloves and worry about the consequences tomorow bc I can't wait anymore. I have a council clean up in a few hours and the carpet and other things have to be out!

When I complained to my sister by txt bc (she can't be bothered talking anymore) about what I had to do- she was so horrible I blocked her from sending any further messages. She told me I'm a whinger and I'm just looking for someone to do it for me like I always had done with my sister and my mum (both passed away). But I never asked them in my life to help me! Whenever I moved I was really organised and if anything their husbands would help with the heavy stuff but that's all!

I feel that any stranger would have more compassion than her!

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