Fibromyalgia Action UK
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Hi all got diagnosed with fibramyalga 2days ago what a relief to finally have a diagnosis. I have been stuck in the house as I can hardly walk does anyone else have this problem and what aids do you use xx

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Hi I find if I am examined or just having stress (ie hospital appointments). my legs are so painful and have no strength - I have to just de-stress by relaxing eating well and slowly building my way up again - I am hoping to get diagnosed this week - Neese. x

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My legs give me a lot of pains as well. Stretching helps me a lot. Anti inflammatory diet also helps me. Staying moving helps me from pain getting worse, but if I find myself stuck I have to ease my way back into it, I have hurt myself in the past from going too quickly and not stretching enough.

Good luck.

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Thank you for your advice and gud luck xx

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Hi

I'm sorry that you are a sufferer too.

Are you on any meds from your dr?

Firstly, yes I do find it difficult to be mobile and get out of the house on bad days.

Secondly, are they referring you to a pain clinic?

That might be helpful, as they can give you advice on how to manage eg, pacing yourself. Doing something, then resting, then doing something and resting etc. Also some do alternative treatments, like acupuncture.

I was told not to fight it like a cold but to learn to live with it and pace myself and accept that I had to adjust my life. It was hard at first as I was a very active and capable person before this, I was angry and fought it for 2 years and in the end I was worse and very depressed. Once I accepted it and did pace myself, things are better and I know if I over do it one day I'll pay for it the next day or so. On good days I can potter about do my chores and crafts, go out for a lunch etc. Life doesn't have to end, you just don't push yourself.

I couldn't take the pain meds the dr gave me as I am allergic to a lot of things.

I take paracetamol, use Volterol gel, hot water bottles. I take extra vit d, as I was low and fibro sufferes can be low in it. I take hemp tabs to help me relax and herbal sleeping tabs to help me sleep. I soak in Epsom salts, which is a good way to absorb magnesium, which we need too. I am on antidepressants from the dr too.

I hope this helps.

I'm sure you will be pleased that you joined the site and you will get lots of help and support and maybe even a laugh or two.

My advice is to read up on fibro as much as poss.

Good luck and I hope that you feel a little bit better very soon.

Take care and best wishes.

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Thank you fibropop ur advice is so rite I go pain clinic but don't think I'm on rite meds I am struggling to accept fibramyalga but I'm going to try hard not to feel that way xx

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Hi.

I have had Chronic Pain since 2005 following Radiation Treatment.

I currently take Pregabiline + Amytriptline + Oxcarbazipine + Amantadine + Trans Tec Patches.

These only seem to take the edge off my Pain.

I have been given stronger meds but I can only take these for short periods.

Due to this I don't know if they would help.

I have turned to none medication routes in a desperate bid for help.

I have nothing to lose but everything to gain.

Steve.

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Hi Steve thank you for replying I take pregabalin but hoping to sort all my meds out gud luck with alternative medicine x

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Wishing you the very best and good luck.

Take care 👍😊

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Thank you so so much and ditto xx

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Hi Deb.

That's no problem "anytime"

is there any other meds that you take currently ???

Yes I tried to have a sort out a few years ago but my condition has noise dived "big time"

I'm currently/have been waiting for NHS Treatment for my Chronic Pain.

Yes I think it is well worth looking elsewhere for help.

Please let me know if I can be off help.

Steve.

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Aww thank you Steve I'm taking oxycontin and oxynorm don't no if u have heard of them hope u don't have to wait to long to be seen at clinic take care x

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Hi Deb.

"OMG-OMG 2"

Yes I have been given these twice but they blow my head off.

The last time I was given them was when I was in hospital for my stomarch surgery in 2014.

I was a junkie for 24/7.

My family though I was mad as one min I was screaming the place down & as soon as I was given Oxynorm I was instantly OK.

No I don't think I will been seen due to "funding"

Never mind.

Steve.

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Really I want to come of them and go on to tramadol feel like it's lesser of the to evils lol, it's sad that when you are in so much pain you can't be seen by clinics x

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Hi.

Yes that sounds a good idea - how long have you been on them ???

Have you tried Pregabaline or Gabapentine in the past ???

I had to come off Tramadol as they make me constapated or so they say.

Mind you all tablets state that in there info.

Thanks but I won't get any funding as I have tried to get it & money in the NHS is even tighter nowadays.

Never mind.

Steve.

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Iv been on them 9 months now I take pregabalin to iv been told by specialist he wants me on amatryptaline NHS funding is tight we had to pay private to get diagnosis as we were at end of tether x

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Hi, that's not to long do they help you ??

Yes I currently take Pregabaline 600mgs per day.

I also take Amitriptline 150mgs per day which is maximum.

Yes I have recently gone to a Private Pain Clinic for much needed help.

Thinking about it I only had one appointment there & I'm closer to much needed help.

I have had my Chronic Pain since 2005, that's 11yrs under the NHS in my books.

Steve.

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Hi Debs,

Welcome to the best site for people struggling with Fibro.

First, what ever you decide you want to come off from, DO IT gradually. Never ever just stop taking or reduce dose levels daily. For example, if you are taking 'Xx', three of them two times a day, the safest reduction is one tablet every two/three days.

Day 1, reduce evening dose By one

Day 3, reduce morning dose by one

Day 5, reduce evening dose by one

Day 7, reduce morning dose by one.

Etc ...

If at any time you find you can't cope with the pain, this is your 'pain barrier'. In other words, if you can't cope with the pain without taking that dose, that is where you stop. Then discuss with your GP what alternative medication is available, that doesn't give the same side-effects, yet has the same pain refuction.

Sorry to say, relieving pain is often a "try if it works ! ", because we are all different. We can suggest different meds to try, but never know how they will affect/effect you. This is where details of what you take is helpful.

Hope you get a chance to sleep tonight, with all the suggestions people's have made, running through your overloaded brain. Some of us don't sleep well through the night, so,you might find there are sleepless night owls around to just give you support.

Don't know the two drugs you mention, will Google them and see what they do. Tramadol is a really good pain control medication. But you might like to try some alternatives. If so, then I would say to you to 'PM' me, send me an email via the site. This saves loads of boring replies for others to read/skip.

Sorry it's so late, been busy day since started, and just now, sitting watching Olympic news, can finish and send you,

Hayesider, hoping we can help you.

(Hate my name hence always Hayesider, xxx

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Hi Debs0401

Welcome to the forum and it is wonderful to make your acquaintance. I have pasted you a link below to our mother site, FMA UK which hosts loads of useful Fibro information:

fmauk.org/

I am so genuinely sorry to read that you are suffering and struggling and I sincerely hope that you can find some resolution to these issues. My mobility has become very poor but due to other medical conditions. I use a tri-walker when I am out of the house which is becoming quite rare these days.

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

All my hopes and dreams for you

Ken

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