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Fibromyalgia Action UK
42,708 members β€’ 54,858 posts

This is my first time on this site.

Hi all, i have resently found out i have Fibromyalgia and i must say its awfull, i would like to keep in touch with people on here as we can compare our troubles,and hopefully any good news.I would like to no if when your really bad i have to take myself to bed which i hate having to do,but i am in so much pain,I also have pain in the soles of my feet all the time,but when they are really bad i loose my balance,i would like to here from some of your problems and how you cope with them,walking was something i love to do i still do some now when i can but its not that much now,as i used to walk miles, i also have IBS,hope i am not moaning to much, the medication i am on at the moment is Amitriptyline three at night,i have tried some other medication but to many bad side effects,i also have pain all down my spine and in my head,well i wont say anymore for now i will wait to here from other poor souls. I live in north wales. hopeing to here from you soon.Many Thanks.

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Hi and welcome Holly20,

This site is a great place for giving support and understanding each other.

We are all in the same boat(if you pardon my expression) The people here have real compassion, It's like a huge close family unit.

I'm really sorry to hear you are having a real bad time of it at the moment. Hope you feel much better soon. xxx

There wil be good days and bad days, we all understand.

Hope he remainder of your day is pain free.

Huge hugs from all of us xxxxxxxx

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Thankyou so much,and there is one thing i like and that is Hugs,so i will send you one back.x.

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Hello and welcome, im a fibromite with IBS and also hypermobility syndrome. tramadol and co codamol are the only medications that work for me.

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Thankyou very much.

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The only advice I can give just now is if you are having trouble with balance think about mobility aids such as sticks or crutches, I am thinking of getting one of those walkers with a seat. xx

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Hi lou,thankyou so much for your reply i have thought about a mobility scooter but i am waiting to see how i get on over the next few months.x

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Hi Holly, and welcome to our forum, which I consider to be the best, most informed and supportive one there isπŸ˜€ You might find it useful to take a peep at our mother site fibroaction.org where you will find lots of very useful information and even support groups possibly in your area.

I wonder if your GP could refer you to a pain management team who could help you with some of your symptoms and get the right medication sorted out for you, that can often be a good way forward.

Can I ask if you live anywhere near Conwy? My mother had a house close to there which was lovely and I know the area quite well, but live in Devon, though I will always have a great love of North Wales and Snowdonia πŸ’š

I much look forward to getting to know you better around the forum and do feel free to join in the lighter posts, such as Ginsing's morning post as quite a few of us find that laughter releases feel good endorphins and takes minds off the pain, even if just for a short period of time πŸ˜ƒπŸ˜ƒ

In the meantime I'm sending lots of positive vibes your way πŸ˜ƒ

Foggy x

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Hi so nice to here from you,i only live 5 miles from conwy its next door,thankyou so much for your lovely wellcome it means so much to me, i can see this site being very helpfull for one another,talk to you again,thankyou so much.

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I don't suppose you know Rowen or Henrydd by any chance? They are down the estuary a bit, I still love the area, sadly Mummy's cottage was hijacked by my elder brother, but he now lives abroad and his lady friend lives there apparently 😳

Foggy xπŸ˜€

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Hi Foggy, yes i no thee area well its down the Conwy valley,its beautiful there to.Going to see Doc tomorrow as the tablets i am taking one of the side affects is weight gain,and that is what is happening to me,dont want to put weight on as that causes more problems.That is the problem with nerve pain medication,its all weight gain,dont no what i am going to do,see what doc says,sorry to bore you,xx

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Hi foggy

We are looking at re locating to Devon next year it's a beautiful place.

Where about are you?

Nicola

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Hi there Nicola πŸ˜€

I'm between Axminster and Honiton, in a small and very beautiful place called Dalwood, which is a splendid little village with everything one could want, a brilliant pub and a community run village shop/post office. Have you decided which part you fancy coming to yet ?

Foggy x

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Hi foggy

Yeah we are looking at North Devon a village called Berrynarbor, just need to start planning the logistics, jobs selling our house etc etc.

Exciting times ahead if I didn't have this horrid condition My life would be nearly perfect lol

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Oh golly, I had some friends who moved here from Berrynarbor, stayed here for about four years then moved back to Berrynarbor but found it not the same as it had been previously and have now moved back here.......odd , but I hope you find what you want and have a lovely new life down here, I will have to come and visit πŸ˜‰πŸ˜ƒ

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Hi holly and welcome, I live in South Wales. I do sympathise with you not being able to walk far now, I love going out with our dog up to the mountains but I can rarely do it now, thought do try to push myself sometimes and pay for it the next day and then it's an Epsom salts bath

you will enjoy it on here as everyone knows what you are going through with the ups and downs of this horrible disease, and can help each other through the bad times, look forward to seeing you posting, good wishes.

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Thankyou so much, i feel abit better now i have nice people to communicate with.

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Hello holly

I just wanted to wish you a warm welcome 😊

You've found a lovely place full of lovely people who are all going through very similar experiences.

I've been a member on the forum for about 3 years and have learnt more here than I ever have from doctors or consultants.

I'm sure you will enjoy the site as much as I do

Hugs

Lu xx

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Thanyou, i am sure i will love this site and will benifit from it,its so nice to get quite afew replys.xx.

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The forum tends to be a little quieter over the weekends, so you may still have more replies yet to come.

As the majority of us don't sleep very well there tends to be someone around day and night.

I look forward to seeing you around 😊

Hugs

Lu xx

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Texas here as if that is a country to itself! Lol I truly hope you find something to help with the foot problems. Lyrica, soma, and a few others, but I do take Cymbalta for the pain in hands and feet! I had had Fibro 40+ yrs so I feel for anyone with it! Hugs so very light is sent your way!πŸŒ·πŸŒΌπŸ’

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Thankyou so much you are very sweet,gentle Hugs to you, i will be in touch with you againas you must have lots of info.x.

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Anytime

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I have just been diagnosed with fibromyalgia I have just been told about this site so this is all new to me it is a comfort to talk to people who know exactly what it is like to b in constant pain I have been referred to a clinic at the hospital near where I live in Southport on 26 of this month so I will keep u all updated at the moment I'm on 3 amitriptyline tablets at night and pain killers I love walking even that is painful but I am really pushing my self we all have to help each other and BB positive there is always some worse off cheers

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Welcome Marycathline :) Glad you've found us , if you need to ask anything please do - enjoy chatting!

Emma :)

FibroAction Administrator

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Thankyou so much, think i have found a good place,as i have been feeling very down.xx.

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Hi ther thankyou so much for the info,will be interesting to see how you get on at the clinic, like you i love walking and i really push myself,but think i try to hard sometimes as we are not use to our condition,have to see how it goes,lovely to have all these people to connect with.x

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Hi Holly20 welcome to the site. You will have a wealth of support and love on here. I've not long been a member and cannot begin to tell you how much it has helped me.

Hugs

Jo x

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Hello Joanne1964,

That's great to hear what lovely feedback to read :)

Best Wishes

Emma :)

FibroAction Administrator

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Hi Joe, thankyou very much look forward to caring and shareing with you.xx.

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Hello Holly20,

Welcome to the community!

Sorry to hear you are still experiencing a pain level which is not bearable. i wonder if this post in our FAQ may be useful;

healthunlocked.com/fibroact...

I see someone above mentioned warm Epsom salt baths which i also find helpful and some pain relief creams alongside medications can have their place too. I found a prescription cream Capasacin helpful but it divides opinion as some who are sensitive really cannot tolerate it but others use it quite happily. However it would most probably be a use 24 hour on small patch test before all over use kind of thing!

Here's a post about Muscle Creams where you can read more;

healthunlocked.com/fibroact...

I have feet trouble too and find Naproxen (prescribed) helps with my pain plus memory foam insoles, sensible cushioned shoes etc :)

Best Wishes

Emma :)

FibroAction Administrator

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Welcome to the forum. We are a friendly, sometimes nutty group on here! There's always someone about with either a reply, a funny picture, a numerous story or even a moan. That's what makes this site great. A mix of caring, supportive people, all willing to share their wealth of knowledge night or day. I'm a night owl so am around if you can't sleep. Take care.xMd55

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Welcome to the forum and I genuinely hope that you are feeling as well as you possibly can be today? And it is wonderful to make your acquaintance. I sincerely hope that you find the forum useful, informative and loads of fun! I genuinely look forward to seeing you around the site.

All my hopes and dreams for you

Ken

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Thankyou so much to everyone as i have had a lovely response,and look forward to getting to no people and sharing info with you all,lots of Hugs.xx

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Hi holly and welcome :-)

Best advise I can give is finding a good balance between moving and rest. I take amitriptyline which I find great mainly as for sleep reasons pain is reduced with it as well.

I am using an app to meditate at the moment and that's helping me stay calm and in the present moment, really helps with the anxiety and down moment's with fibromyalgia.

Love Keeley x

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Thankyou for the wellcome and the good advice,i also take Amitriptyline,can i ask you if you have had any weight gain while you have been taking this medication,as that is one of the side effects and unfortunatly that is what is happening to me and that will only cause me more problems,seeing doc tomorrow dont hold out much hope.Thanks Keeley.xx.

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Hey holly

Oh yes! 2 stone on :-( they make me binge on sweet food! And I think I turn to chocolate to make me feel better. But everytime I try and come off them the pain is to intense and not worth it as I end up taking far to many cocodamol's which don't work on there own with me.... So I am currently trying to only take 20mg amitriptyline to ease the pain and on a Diet. Gets me down with the weight gain tho.

Iv tried all the other med's and none them work like amitriptyline.

I told my doctor I'm like a bulimic with amnesia because I forget to be sick hahahahahahaha x

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Thanks you made me laugh,i will see how it goes,let you no.xx.

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fibro is a terrible ailment bad day here today so know how you feel tummy trouble and the runs what next keep on here people are really caring just hope tomorrow better day g b fedup me

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Hope you feel better tomorrow.xx.

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Hello Holly20. Welcome. I think you will really find the site informative but more importantly very supportive.

I used to love walking too, but can walk on the flat at my own pace, but forget hills. I find if I walk quickly my legs feel like they are in compresssion socks and walking very quickly becomes impossible.

When I was diagnosed I was referred to the Expert Patient Programme which is run my volunteers with ongoing medical conditions. I am into my third week and have found it useful . It may be called something different where you live if available.

The only advice I would give is pace yourself and don't punish yourself. Rest when needed and don't feel guity.

Take care Peace 2014

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Hi peace,Thankyou for the wellcome, what you said sounds abit like me, i feel dreadfull if i try to do the hills,i wonder why this is,we have lovely mountains here and i love to be walking on the top,i still try sometimes and feel ace that i have done it,that does not happen very often,but luckely there are a few car parks at the top so i could do a differant walk,oh wish we didant have so much pain,anyway enough of my moaning,thanks peace.xx.

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With so many good replies I'll just wish you a warm welcome with big soft fluffy hugs.

(have you encountered the fluffies yet?)

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Thankyou so much,fluffy hugs.x

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