This is my first time on this site. - Fibromyalgia Acti...

Fibromyalgia Action UK

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This is my first time on this site.

holly20 profile image
42 Replies

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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holly20
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42 Replies

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

holly20 profile image
holly20 in reply to

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

trekster22 profile image
trekster22

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

holly20 profile image
holly20 in reply to trekster22

Thankyou very much.

lou1065 profile image
lou1065

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

holly20 profile image
holly20 in reply to lou1065

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

Fibrofoggiest profile image
Fibrofoggiest

Hi Holly, and welcome to our forum, which I consider to be the best, most informed and supportive one there is😀 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 💚

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 😃😃

In the meantime I'm sending lots of positive vibes your way 😃

Foggy x

holly20 profile image
holly20 in reply to Fibrofoggiest

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.

Fibrofoggiest profile image
Fibrofoggiest in reply to holly20

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 x😀

holly20 profile image
holly20 in reply to Fibrofoggiest

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

Njh1975 profile image
Njh1975 in reply to Fibrofoggiest

Hi foggy

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

Where about are you?

Nicola

Fibrofoggiest profile image
Fibrofoggiest in reply to Njh1975

Hi there Nicola 😀

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

Njh1975 profile image
Njh1975 in reply to Fibrofoggiest

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

Fibrofoggiest profile image
Fibrofoggiest in reply to Njh1975

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 😉😃

holly20 profile image
holly20

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

BlueMermaid3 profile image
BlueMermaid3 in reply to holly20

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

holly20 profile image
holly20 in reply to BlueMermaid3

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

BlueMermaid3 profile image
BlueMermaid3 in reply to holly20

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

Regnofibro1 profile image
Regnofibro1

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!🌷🌼💐

holly20 profile image
holly20 in reply to Regnofibro1

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.

Regnofibro1 profile image
Regnofibro1 in reply to holly20

Anytime

Marycathline profile image
Marycathline

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

Mdaisy profile image
Mdaisy in reply to Marycathline

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

Emma :)

FibroAction Administrator

holly20 profile image
holly20 in reply to Mdaisy

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

holly20 profile image
holly20 in reply to Marycathline

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

joannie1964 profile image
joannie1964

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

Mdaisy profile image
Mdaisy in reply to joannie1964

Hello Joanne1964,

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

Best Wishes

Emma :)

FibroAction Administrator

holly20 profile image
holly20 in reply to joannie1964

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

Mdaisy profile image
Mdaisy

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

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

TheAuthor profile image
TheAuthor

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

holly20 profile image
holly20

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

Keeleybee profile image
Keeleybee in reply to holly20

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

holly20 profile image
holly20 in reply to Keeleybee

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.

Keeleybee profile image
Keeleybee in reply to holly20

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

holly20 profile image
holly20 in reply to Keeleybee

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

fedupme profile image
fedupme

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

holly20 profile image
holly20

Hope you feel better tomorrow.xx.

Peace2014 profile image
Peace2014

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

holly20 profile image
holly20 in reply to Peace2014

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.

fenbadger profile image
fenbadger

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

(have you encountered the fluffies yet?)

holly20 profile image
holly20 in reply to fenbadger

Thankyou so much,fluffy hugs.x

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