just been told i have fibromyalgia - Fibromyalgia Acti...

Fibromyalgia Action UK

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just been told i have fibromyalgia

Clumsy_1 profile image
22 Replies

i am in lincoln, is there a support group, please, i am more near South hykeham as im feeling trapped and alone, no one face to face to chat with, i do nit have any friends, or family, i have a partner hes grest but its not like i can open up, sorry to bother you all

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Clumsy_1 profile image
Clumsy_1
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22 Replies
Ginsing profile image
Ginsing

Hi clumsy welcome to the bet site for suffers of fybromyaligia. There is usually someone around to say Hi and we need to let of steam every now nd then. How long have you been suffering with Fybro and do you see a rheumatologist?

If you are using medication tell us what sort we will try and offer some answers for you ok Fire away

Ginsing

Clumsy_1 profile image
Clumsy_1 in reply to Ginsing

thank so kindly for your reply, i have been in pain different parts of my body and was seeing different consultant's till i went to rheumatology and got sorted, its nice to put a name to it, no medication yet, for i am already on morphine patches and morphine oral, antidepressants as i also have depression, ocd,

TheAuthor profile image
TheAuthor

Hi Clumsy_1

I sincerely hope that you are feeling as well as you possibly can be today? I have pasted fro you below a link to the FMA UK cache on support groups, so hopefully there is one close toy you:

fmauk.org/contactsmenu/supp...

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

Clumsy_1 profile image
Clumsy_1 in reply to TheAuthor

ken whag beautiful words touched me alot, i just feel numb, and i have physiotherapy soon , its just understanding and finding info,to help, they did hand me information on the condition, but your words touched me thank you

TheAuthor profile image
TheAuthor in reply to Clumsy_1

I want to truly wish you all the best of luck with your physiotherapy and I sincerely hope that ti helps you my friend. Thank you so much for your kind words, and I want to genuinely wish you all the best of luck.

All my hopes and dreams for you

Ken

Christy_R profile image
Christy_R

Just wanted to say hello and let you know you're not in this alone. One of the main things you'll come to find by being in this group is how many of us get through another day because we finally have someone to share,rant, cry and laugh with. Many of my early mornings are spent reading everyone's stories of how they deal with fibromyalgia and some of what everyone shares has helped me deal with it better. Take care! Christy

Clumsy_1 profile image
Clumsy_1 in reply to Christy_R

i do hope so, my partner i feel dont understand it fully how painful im in, i just dont know what to do, tryth i feel so lost alone, so much has happened in my life, now this,

Matrix profile image
Matrix in reply to Clumsy_1

He can't understand because it comes with crippling tiredness an pain awful pain ,my hub is wonderful but I think you have to have it to understand .Tell him it's like having a flu and it never stops . Your going to be ok I know it feels scary but I promise you you will cope I did and so will you . Your boyfriend sounds like he is trying . Take care xx😇

Tinamartin15 profile image
Tinamartin15

Hi clumsy. Your in the right place here. The people are smashing and very supportive. I too live near Lincoln and don't know of any support groups . I'm in Woodhall Spa. So not too far from you. Gentle hugs x

Clumsy_1 profile image
Clumsy_1 in reply to Tinamartin15

That's such a shame for i think if there was it would be such a benefit. Not sure of Woodhall spa is. I'm in Thorpe On The Hill

Tinamartin15 profile image
Tinamartin15 in reply to Tinamartin15

I'm in between Tattershall and metheringham. 15 miles from Lincoln x

Clumsy_1 profile image
Clumsy_1 in reply to Tinamartin15

I've heard of Metheringham

Jan810 profile image
Jan810

Hi. How are you feeling today? i think this is the best place to have a rant or to ask any questions or even to tell everyone when you are having a great day. You are surrounded by people who suffer the same way as you, some worse than others but all have some kind of illness. It's great to talk to similar people if you feel as if you cannot talk to your partner.

Have you recently moved to Lincoln? Do you not see friends as part of your illness or are you not very social? Tell us a bit more about yourself.

My names Janine, I suffer from fibromyalgia, have 4 children, it's a massive struggle at times trying to care for them but I have a great husband who is very supportive. I do not see any friends anymore. I do not work. I found this site about a month ago and I love it, I'll read about people's experiences good or bad, some positive, some very sad, some heartwarming. The people are very kind. It feels like I finally have somewhere I can fit in and it gives me hope and a sense of relief.

Do not feel alone as your never alone truly. xx

Clumsy_1 profile image
Clumsy_1 in reply to Jan810

Hi. I moved to Lincoln about 4 years ago. I don't have friends and my children grown up and disowned me.as my family so all alone children got pulled in from my exhusband. R you in Lincoln

Clumsy_1 profile image
Clumsy_1 in reply to Clumsy_1

I am 54. Female Lincoln area. From just outside Southampton. Fordingbridge is the place I grew up.in have had 4 children 2 boys 2 girls. Eldest 34.28.25.24.I come from large family 9 girls 2 boys. I'm not longer working.in have ocd depression fibromyalgia. And other smaller things.

Jan810 profile image
Jan810 in reply to Clumsy_1

I don't live in Lincoln sorry, I am from South Wales. I'm sorry that your children disowned you. It must be hard having no family and struggling with your illness. You have come to the right place to chat though, I hope that soon you will feel you are part of the fibromyalgia family.

OCD can be debilitating in itself. What kind do you suffer from? I used to have OCD about germs, I would bleach everything in sight, started from having food poisoning as a child. I also hate change and don't like things out of place, or used to before I started to get worse.

I think for most people depression and fibromyalgia go hand in hand. Has your doctor prescribed you medication for your depression? Maybe it would be helpful for you to seek advice from your g.p if not. Medication can lift your mood which in turn they say lessens your symptoms.

Do you have any animals to keep you company? Days are long when you are alone and don't work.

I really feel for you, sorry that I can't be of more help, but if you would like to chat then I'm here. Xx

Clumsy_1 profile image
Clumsy_1 in reply to Jan810

Thank you for your kind words. It is nice to chat I agree. My ocd is germs. Have to be in my comfort zone as I hate sudden changes. I also live my life in fear. No idea why this. The ocd just makes me fear life.

Clumsy_1 profile image
Clumsy_1 in reply to Clumsy_1

I take medication for this but my nerves are high at all times

Jan810 profile image
Jan810 in reply to Clumsy_1

Do you think that your g.p could review your medication? It sounds like you have very high levels of anxiety. Have you ever been referred to community mental health? Xx

Jan810 profile image
Jan810 in reply to Clumsy_1

Such a horrible, debilitating illness isn't it. My worse fears were when there was a stomach bug going around, I wouldnt eat for days then just in case I was sick. I really feel for you. Have you ever tried CBT or anything to help. It's a shame you have such fear about germs as you are still young. It's hard when you live life for such a long period in a certain way. My biggest fear was door handles. And I hadnt eaten with my hands for years before I got too ill to care. I still have some things that still scare me but I wouldn't say I had OCD anymore.

There are lots of other groups available on here to, try joining a few to build up your social network. I had a look online too, MIND have social meetings, you can chat to real life people then if it interests you. You can find local groups in your area if you visit their website. Xx

Matrix profile image
Matrix

Hi first off your not bothering us we are all in the same boat and a lot of us are lonely. you have to do things or you will go nuts and we all need friends or someone who is not a partner just a friend . I expect one of the moderators will be able to help you but you can always talk on here if you need there is always someone around xx😁

Loraine121 profile image
Loraine121

Hi Clumsy , You have certainly come to the right place here , it's the best thing i have done in a long time, I have had fibromyalgia for 16 years and I have asthma and another lung condition as well as on oxygen 24/ 7 although thatis only recent the oxygen.,

I came across this site by accident as I dont normally go on any social media sites but I was advised to look at the British lung foundation and I camr across the site as well.

Everyone is so friendly and helpful, we are all on different types of medication and have additional things that comes along with fibro but there is always someone here even just to chat with its been a god send for me as I was just sitting in my room on my own like a recluse although I do have family and friends but I wasn't interested as fibro is so difficult for others to understand that you give up trying to explain it.

You can laugh and cry here even though the night if you cant sleep thereis often someone else here to talk to.

I hope you get some proper medication and help now you have been diagnosed with fybromyalgia.

Be kind to yourself it takes time to get used to finding different ways of coping with pain and all the rest that you can get with fibro we are all at different stages but will always be able to try and help you find ways of coping somethings work for some but not others it's a lot of trial and error. I'm still finding new things that help me. Through talking to people here.

Wishing you a peaceful weekend

Loraine x

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