Living with fibromalga.

[Neil25]

Hi my name is Cheryl I've lived with fibromalga and raynards for a while now, you have your good and bad days, no one seems to understand. You think it's in your head, very few health care professionals understand. But we have to be positive. And work together.

[TheAuthor]

Hi Neil25

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 for you below a link to our mother site, FMA UK which hosts loads of useful Fibro information:

fmauk.org/

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

[Neil25 in reply to TheAuthor]

Hi Ken not feeling too bad, better than I was. Thanks for asking. And thankyou for the website information. And the good wishes to keep well, hope you're well yourself? .take care Cheryl.

[TheAuthor in reply to Neil25]

Good luck my friend

[Jan810]

Hi Cheryl, so true. I think staying positive is a great tool to have when you are suffering in any way. I hope your getting support and can manage your symptoms as best as you can. It's not in your head though no matter what the doctors say. This is a great place to meet others who suffer just like yourself. Have a lovely and pain free day. X

[Neil25 in reply to Jan810]

Hi jan810 thankyou for your reply, those kind words are enough. I do get a lot of support from my husband and family, but when I was first diagnosed people look at you like yeah right just because you look well, I hope you are keeping well? .and thankyou for the kind words. I also do a lot of mindfulness, take care love. Xx.

[Jan810 in reply to Neil25]

Your very welcome :). I'm glad to hear that you get lots of support from your husband and family. I know what you mean though by the way people look at you as if there's nothing wrong with you, but don't mind them, you have your family and they must know the challenges you face on a daily basis. My husband is extremely understanding of my illness and goes to the ends of the earth for me. I'm doing good today thank you. Having a tiredness flare up this week but mentally doing great. Have a wonderful Sunday. X

[Neil25 in reply to Jan810]

Hi Jan810 thankyou again for a lovely reply. Glad you get excellent support from your husband, my husband is a rock two. I know what you mean by the fatigue, it's like what you say a draining week, you look after yourself. Keep well and many positive thoughts . Take care love. Xx.

[Jan810 in reply to Neil25]

Your husband sounds like a great man. Lots of positive thoughts to you too, look after yourself and rest when you can. X

[Neil25 in reply to Jan810]

Hi jan810 you two. Your husband sounds the same. I'm from Sunderland Tyne and Wear, we're are you from? .take care love. Xx.

[Jan810 in reply to Neil25]

I'm from South Wales near Swansea Cheryl. This website is great as it can connect people far and wide. X

[Neil25 in reply to Jan810]

Hi jan810 I just thought if you'd lived closer we could of meet up for a coffee and a natter when we were having a bad day. But south Wales is a long way to come. But as you say it's great for meeting people far and wide. Take care love. Xx.

[Jan810 in reply to Neil25]

That is so thoughtful of you, it would have been lovely to meet for a chat. Your right it's a little far though :). There are lots of wonderful people on here I wonder if there is anyone that lives closer to you . I hope so. X

[Neil25 in reply to Jan810]

Hi jan810 no problem, I was wondering how you would feel regarding being pen pals ?.I have had some lovely responses. Well you never know. Well keep in touch. And keep strong. You take care all my love. Xx.

[Jan810 in reply to Neil25]

Yes by all means. Feel free to message me any time. I come on to have a read most days :). I'm sure that once you get acquainted to the group you will meet so many great people hope you have a very pleasant evening. Xx

[Neil25 in reply to Jan810]

Hi jan810 that's great thankyou and likewise with you feel free to message me anytime. The messages I have been getting are lovely, enjoy your evening two. Take care love. Xx.

[Jan810 in reply to Neil25]

Thank you so much and shall do :). X

[Neil25 in reply to Jan810]

Hi jan810 no need to thank me anytime. Xx.

[Neil25 in reply to Jan810]

Hi janine. How are you feeling today? . My head is so much better. Xx.

[bluebell99]

Hi Cheryl, and a warm welcome to our friendly fibro forum where you can find good advice, understanding, support and information.

I see you have already joined in and are making friends, we all know what you are going through and it is easy with like minded people.

If you come up against health professionals who do not know about fibro you can go on to our Mother Site fmauk.org to have an information pack sent anonymously which will help.

It is great to have a positive outlook, I tend to be a half glass full person myself!

Kay

[Neil25 in reply to bluebell99]

Hi bluebell99 thanks for the warm welcome. I would be really interested in getting a few of those packs sent to my GPS and one of my consultants. ?.I'm a very positive person and do a lot of mindfulness, but thiers days you just don't know what to do. Hope you are keeping well? . Take care love. Xx.

[Matrix]

Hey there welcome and hope this site helps you as much as I have been helped .I have had fibro since a young child but I have fought through and managed to marry have three children and I did it ,you do have to keep positive the things you can do change ,but there are things we can enjoy doing .For myself I find crafting a big distraction and if it's looking as if it's going to be a bad day I get myself into my craft room sometimes I craft sometimes,sometimes I just look out of the window and look at all the trees in my garden .All the best and I agree the drs in the main unless your lucky don't understand it .x

[Neil25 in reply to Matrix]

Hi thanks for the welcome. I've just joined today. And the responces have been overwhelming I'm glad it's helped you two. That must of been horrendous for you?.well done you.that's very true . Day to day. I do alot of mindfulness and relaxing with my candles on. And you. Your right but we have to keep fighting. Keep strong. Love. Xx.

[Matrix in reply to Neil25]

Good for you doing the mindfulness , it's nice on here and I have never had anyone be other than kind . It sounds like you need be here it's support and it doesn't take long to feel real friendships happening . So take care and if you need a chat or found a symptom just pop on and every one will be glad to help you and the moderators are just so lovely . Hope you sleep well , can /do you work or have you had to stop . Take care sweetie speak soon xx

[Neil25 in reply to Matrix]

Good morning. I throughly enjoyed my mindfulness, as I say I joined yesterday and the responces have been overwhelming and so supportive. I'm so pleased I joined itsspeaking to people who have similar conditions and your not alone. You take care two. And like wise to you if you need a chat or just a groan.I'm on and off with my sleep it varies so much. Had to give up work which has nearly killed me. But I'm doing voluntary work to hopefully get me back to work I'm a samaritian, and voulnteer at a disability centre. But some days I just can't get to them. Take care keep strong and keep smiling. All my love. Xx.

[Matrix in reply to Neil25]

I totally understand about giving up my job which I loved it's so hard takes a while to get over it . Well you do two worthwhile voluntary jobs .

It's a positive site and that's what I like most of us have several things we are suffering with , but we just do the best we can . I wish I could go to sleep I'm sure I wold feel so much better bu hey there is no pony wishing flor the moon .Take care speak soonxx

[Neil25 in reply to Matrix]

Hi it certainly does. Thankyou so much. Do you work? .it is a worthwhile site definitely. Do you have trouble sleeping two? .some times I have a great nights sleep, then I'm awake for ages. But enjoy your day whatever your upto. Take care love. Xx.

[Neil25 in reply to Matrix]

Hi hun how you doing? . Xx.

[Matrix in reply to Neil25]

Okish hope I sleep tonight. wouldn't that be nice.Had to give up work and. when I did give up I became more ill I was running in empty . Hope you get some 💤💤 tonight . My shoulder is really painful but we always have one place or another that's painful . Hope you are ok xx👍

[Neil25 in reply to Matrix]

Hi hope you do get some sleep, have you taken painkillers? .I'm not two bad thanks. Take care love. Xx.

[Matrix in reply to Neil25]

RHad pain. Killers still awake..Glad your not too bad .Speak soon xx

[Neil25 in reply to Matrix]

Ah bless you. Hope you manage some sleep today? .look after yourself. Take care love. Xx.

[Matrix in reply to Neil25]

Had a little sleep early morning , so wish I could be like my hub he can sleep anywhere and through anything .Have a good day , hope you slept xxn😁

[Neil25 in reply to Matrix]

Hi hun a little bit of sleep is better than none I suppose? .your husband sounds like mine , he can sleep through anything. Well I'm off to the hospital today, I slept albsoutley fine. Thanks for asking. Enjoy your day. Take care love. X.

[Matrix in reply to Neil25]

I think it's a man thing in general fibro excepting that men sleep better than women . Sure some is better than nothing . What you going to hospital for and I hope it goes well go you . Take care my friend travel safely and let me know how you get on. Xx😀

[Neil25 in reply to Matrix]

Hi hun I think your right. I have problems with my pancreis. Thanks. I will do. Take care love. Xx.

[Matrix]

Neil so sorry to hear that ,hope they can help you out sweetie can't be very nice is it painful ? Hope it all goes well and you get some help .Take ,Honora

[Neil25 in reply to Matrix]

Hi hun it's Cheryl not Neil. It's very difficult and painful at times, sometimes I feel so I'll. Just on my way back from the Freeman thier going to do tests , and take it from Thier. And I'm over weight so I've got to lose some as this is affecting my liver easier said than done. It's so hard. Thanks for asking. Take care love. Xx.

[Matrix in reply to Neil25]

I know how hard it is iwas 11/12 but that was when they started taking me to Drs and I had before even then .Sorry on the name thing .Most of us who have fibro are overweight it's so hard hard to lose it let me know if you find something that works pity you don't live near me what we need is walking partners .There is at the mo no tests for fibro .Keep your chin up Cheryl .When you get in have a cuppa and rest up its trying I know.xx

[Neil25 in reply to Matrix]

Hi hun OK as I say I vary. No need to apologise I just wanted you to know my name. Very true, I'm in Sunderland Tyne and Wear, where are you? .always do but sometimes it is just so hard. I've heard that thiers a canabis patch for people with diabetes neuropathy and for people with fibromalga? . I'm home now changed in my pj's have my cuppa and going to relax. It's very trying at times, well enjoy your evening. Take care love. Xx.

[Matrix in reply to Neil25]

Hi darling I'm in Gloucestershire down south ,I love the geordie accent I grew up up north left when I was 16 runaway actually .Enjoy your cuppa I'm having a nightmare trying to sync

My iPad and iPad Air with my I phone it worked up until a week ago .xx

[Neil25 in reply to Matrix]

Hi hun OK, xx.

[Matrix]

Cheryl you are so right we need each other especially when it's tough and we all have those days lovey . I can't settle to anything today tried to make a birthday card and that wasn't going well , think I will make my hub a cake that boy can eat cake . This week is dragging somewhat wish I had a wand i would have perpetual long weekends .lol xx

[Neil25 in reply to Matrix]

Hi hun your definitely right. OK, like my husband he has such a sweet tooth. Well try and enjoy your day. Take care love. Xx.

[Matrix]

I had such a bad night with RLS Nightmare walking up and down still there niggling trying to walk and when I'm tired lying down is better than sitting . But on the bright side at least I don't have to go to work, because I have gone to work very poorly . Hope your having a lovely pain free day . Just made hub a cake he has had a rough week so I thought I would make him a cake and I have set an alarm in case I drop off to sleep . Xx

[Neil25 in reply to Matrix]

Hi hun it's a nightmare we live in but we have to keep going. That's a good thing, and your not better thought off going into work when your bad, I have felt poorly for a few days, I have an appointment at the Dr's at 3.20, I'm sure he'll enjoy it. I'm sure you won't. Take care love. Xx.

[Matrix in reply to Neil25]

It is made worse by this painful condition but we just have to get on with it . Do you work or have you had to give it up like me and I really loved my job , I worked three days a week . But when I got home I changed into pjs and fell asleep on sofa , I couldn't even eat the tea David had so lovingly cooked for me , he would try and feed me lying on my side but I just didn't want it .As I'm always saying this too will pass xx

[Neil25 in reply to Matrix]

Hi hun. We have to. Had to give up work albsoutley loved my job. Xx.

[Matrix]

Me too it's sad it we have to give up jobs we loved .But that's what we have to do and find other things to occupy our time .x