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Fibromyalgia Action UK

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hi there im a newbie

wolvesguy profile image
19 Replies

Hi everybody im a newbie to this site and its my first blog i suffer fibromayligia and chronic fatigue syndrome and depression and i suffer thyroid condition i was diagnoised over 5 yrs ago and its a battle everyday for me like many others on here im currently awaiting my esa tribunal because they think im fit for work what a joke i went for my esa assement in my wheelchair and the lady couldnt understand why i was put in the works catergory but i know i prob lose the appeal well thats what im expecting i would like make friends on as i have no friends in life who i can talk about my condition also is there anyone on fentayl patches if so do you suffer from being awake all night when changing the patche every three days or is it just me lol pls if you want to reply feel free love to make friends friends are inportant in life also pls excuse my spelling in some words lol

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wolvesguy
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19 Replies
ladymoth profile image
ladymoth

Hi Wolvesguy,

Welcome to our site. Lots of friendship here, plus tips and hints on how to survive with fibro and all its friends!

.All of us including the volunteers are fibro sufferers, so we understand how you feel. Have you had a look at our main pages?

fibroaction.org

I don't have Fentanyl, but many people here will share your experience. I take Tramadol, and am usually awake half the night. Unfortunately, I tend to return to bed with a cuppa, and then get up much too late!

Our experience of ESA is that people are usually successful on appeal, so don't get too stressed out.

I hope you enjoy being here with us, and we shall look forward to reading your posts. Please don't worry about spelling or typos - it's not an issue, as most of us get 'fog' and write some real howlers. Well, you have to have a laff, don't you?

Best Wishes,

Moffy x

Ginsing profile image
Ginsing

Morning Wolvesguy,

Welcome to our site, I hope you enjoy it and find lots of useful information about Fibro and related stuff. I am a early riser usually about from 4.00am onwards so if you ever fancy a chat just go for it :). Moffy has put all the things in her welcome that you need so let me just say welcome once more good to have you join us xgins

wolvesguy profile image
wolvesguy

cheers moffy and gins for your posts i dont normally sleep that good normally wake up at least 3 or 4 times a night pain and discomfort wakes me but when it comes to patch change day well im up all night and the next day im hyper but the more hyper i get the more pain im in dont make sense lol i will try keep up reg blogs and answer anybodys questions if i can x

Morning volunteer number three rushing... Ok staggering in ... Half dressed... But very friendly.... I tried fentanyl ... Didnt work for me , but then not much does... I have reactions to most meds ... I am the awkward one... But I do have a great combo of night meds ... I sleep for 7 hours every night .... Fortunately.... because in the day I have no pain relief as I can only tolerate paracetamol ... Which I really don't bother taking unless I have a headache cos they don't do much.... But I get sleep which a lot of us on here don't so I am lucky...

Glad Moffy has given you all the details ... Gins has given you a welcome too... So the only thing I can add is dont stare at the rather large spot of Moffys forehead....

VGx

wolvesguy profile image
wolvesguy

cheers very grumpy for your blog paracetamol dont work for me at all you are lucky if you get 7 hours sleep wished i did lol anyway i keep you all updated the best i can ade x

Aisha profile image
Aisha in reply to wolvesguy

Hello wolvesguy, I've been on Fentanyl 50mg for the last 5yrs they were my life saver after my fibro returned after losing my mum! I also take Oramorph and paracetamol for break through pain which works for me. I don't have any trouble sleeping I am always tired, but I do take Citalapram ant Amitriptyline at night which gives me a good nights sleep! Welcome to the site....Aisha...x

Aisha profile image
Aisha in reply to Aisha

I forgot to mention I don't understand why you stay awake to change your patch! Just make sure you change it either during the day or early evening! Good luck... Aisha x

wolvesguy profile image
wolvesguy in reply to Aisha

hi aisha thank you for the blog i cant understand it as well why i cant sleep when i change my patch i use to change in the morning now change at night still no differerence i also take Amitriptyline they slighty help but not much got to see the doc on mon for a medication review so im going to mention the probs im having but once again for replying ade x

ladymoth profile image
ladymoth

After being here a while, Ade, you will probably notice that most of us volunteers are somewhat round the bend!

Don't worry about it - our craziness keeps us happy, and you're welcome to join in. This has nothing whatever to do with the spot on my forehead - VG is jealous 'cos she hasn't got one! :D

Moffy x

Hi Wolvesguy.

I tell you what mate you will not regret becoming a member of this forum.

It's made a huge difference to me becoming a member of fibro action.

Take for instance, yesterday I asked anyone if they got a creeping feeling down their body

Before a flare up.

Straight away up popped a message for me in my inbox.

Confirming that they got it too.

Then I had a couple more telling me they got it too.

It was huge relief for me that other fibro sufferers got it too.

I mean who else could I have asked. Friends family, no!!

I don't use the patches you have, but am taking quite a lot of other meds.

Don't worry about your appeal because I am quite sure it will all come good for you.

We are all here for each other so it makes us well certainly feel, we'll certainly me that

We are not alone.

Looking forward to hearing from you via a blog.

Bibi x

wolvesguy profile image
wolvesguy in reply to

hi bibi thank you for replying to my blog i dont get a creeping i get like my legs are bubbling away in the mornings before getting up i know it sounds strange but i cant put it any other way lol unless im going mad lol anyway thanks again ade x

jillylin profile image
jillylin

Hi

you have landed on a brilliant site. Everyone is so friendly and helpful. I know I feel less alone even when I am not posting.

Hugs

Jillyxx

charlie_red profile image
charlie_red

Hello,

Welcome! This site has been brilliant, I found it not so long after being diagnosed (2 years ago) & I feel so welcomed by everyone. Everyone has great advice and is really friendly :)

C xx

Cookie72 profile image
Cookie72

Hi there Wolvesguy welcome to the sight, I came on here about 4weeks ago, and it has made a difference tome, as bibi said, it puts your mind at rest to know that others have the same symptom as you, and you must lookout for the volunteers they often go on a picnic do join in with them its a laugh, the other day they went thru the wardrobe to narnias garden it was quite funny, so if you have a sense of humour do join in, they are a great bunch of fibro friends on here, gentle hugs to you .....Dee x

haribo36 profile image
haribo36

Hi there,I've had fm for 8 years and suffer with depression.I also suspect I have m.e too as Iam always exhausted too.Ive just recently started using the site and I must say its made a huge difference and I've even met up with someone from the site who lives round the corner.I would like to chat as I don't have many friends,and it's good to have friends with people who understand about the condition x

wolvesguy profile image
wolvesguy in reply to haribo36

hi there thanks for your reply to my blog thats good that you have met someone who lives around the corner to you its def good to have friends esp those who suffer from the same complaints it would be nice to meet someone like that around my area but i neverknow i might feel free to chat to me at anytime ade x

Devonlady profile image
Devonlady

Hi and welcome. I tried them patches but a long while ago. Couldn't get them to stay on so gave up on that. In general I find I get nights I just can't sleep however tired I am. Last night was so tired I could hardly keep my eyes open or move and yet after being in bed for hour I was wide awake and have been so most of the night.

wolvesguy profile image
wolvesguy in reply to Devonlady

thanks for your reply to my blog i had the problem with the patches at first tried everywhere and the only place they stick is on my upper arm yes i was awake again all last night due to patch change day i know how you feel with the sleep prob on my normal nights i still wake up about 3to 4 times a night due to discomfort and pain dam nuisance lol ade x

wolvesguy profile image
wolvesguy

thanks to everyone who has replied to my blog i hope to make reg blogs on here you all made me feel so welcome many thanks again ade

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