Hi I'm new on here and currently having really bad flare up

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Re: Hi I'm new on here and currently having really bad flare

Postby Sarah_89 » Wed Dec 17, 2014 12:19 pm

Mini wrote:I'm not far from benfleet so southend was my nearest hospital, I went on a pain management course there and wondered if that's where you were going.

It's really hard to describe to other people who don't suffer from any of this exactly how you feel, it becomes very frustrating

Ok was that with a group of other sufferers & was it any good?

Yeah you're telling me! So I think dazzleship as a point about telling people as little as possible. I guess all they need to know is that you have an illness, maybe that's enough. We don't have to explain ourselves :-)
I am a fibro fighter! :-)

Keep fighting guys and gals and stay strong! Gentle hugs

Sarah x
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Re: Hi I'm new on here and currently having really bad flare

Postby Sarah_89 » Wed Dec 17, 2014 12:23 pm

dazzleship wrote:
Sarah_89 wrote:Do you think it would be a good idea to ask my specialist to write a letter that I can give to my HR department explaining my illness a bit so I don't have to explain it? And if any conflicts arise they can look at the letter.

yes I think that's a good idea then the HR department have plenty of information about your illness which can only help.

and good luck going back to work in the new year :-)

Yeah and then I don't have to keep explaining myself to people, causing myself unnecessary stress, frustration & exhaustion!

Thanks a lot :-)
I am a fibro fighter! :-)

Keep fighting guys and gals and stay strong! Gentle hugs

Sarah x
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Re: Hi I'm new on here and currently having really bad flare

Postby Zia2014 » Wed Dec 17, 2014 3:41 pm

Hi Sarah :)

dazzleship wrote:
Sarah_89 wrote:Do you think it would be a good idea to ask my specialist to write a letter that I can give to my HR department explaining my illness a bit so I don't have to explain it? And if any conflicts arise they can look at the letter.

yes I think that's a good idea then the HR department have plenty of information about your illness which can only help.

and good luck going back to work in the new year :-)


Just on this, you might find this useful: http://www.arthritisresearchuk.org/shop ... algia.aspx

It's a booklet published by Arthritis Research UK and it's quite good. Doesn't go into flare ups, and it does imply that sleep and exercise may cure all ills ( :roll: ), but it has the basics and you can order them for free. I got several to give to my family and friends.
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Re: Hi I'm new on here and currently having really bad flare

Postby Sarah_89 » Wed Dec 17, 2014 5:22 pm

Zia2014 wrote:Hi Sarah :)
Just on this, you might find this useful: http://www.arthritisresearchuk.org/shop ... algia.aspx

It's a booklet published by Arthritis Research UK and it's quite good. Doesn't go into flare ups, and it does imply that sleep and exercise may cure all ills ( :roll: ), but it has the basics and you can order them for free. I got several to give to my family and friends.

Hi Zia2014 :wave: my doctor gave me that exact leaflet when he diagnosed me & I agree it's not the most helpful thing in the world but I also gave it to family & friends to look at when I was first diagnosed.

However since then I have done further research on the internet & found much more in-depth & useful resources. But you're right it's good for the basics & coming to terms with it when you're first diagnosed & giving it to people close to you to give them an idea of what's wrong with you too.

I would suggest to you & anyone else wanting to understand FM if they've got it or know someone close to them who has to research into it online, just type it into Google & you'll find loads of great information on it & ideas for managing it. There's a few websites dedicated purely to fibromyalgia & I find American websites & sources are sometimes better than UK ones.

I found this the other day https://www.surveymonkey.com/s/9QQDT3R it's American & I found it extremely helpful for me. I showed it to my dad & now he understands my illness a lot better :-D hope this link helps you or anyone that sees it :-)
Thanks for your reply :-)
Last edited by Sarah_89 on Wed Dec 17, 2014 5:34 pm, edited 2 times in total.
I am a fibro fighter! :-)

Keep fighting guys and gals and stay strong! Gentle hugs

Sarah x
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Re: Hi I'm new on here and currently having really bad flare

Postby Mini » Wed Dec 17, 2014 5:29 pm

It was a group thing last 8 weeks if I remember, I say group but there was only 3 of us in it, all with fibro. It was good information for the pain side of it but I personally suffer more with the fatigue. Might be worth looking into if it helps you :-)
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Re: Hi I'm new on here and currently having really bad flare

Postby Zia2014 » Wed Dec 17, 2014 7:00 pm

Ha ha maybe there's more of those leaflets out there than I thought then ;-) Yes I've done quite a bit of reading around it, the leaflet is just my quick and easy way of not having to explain it to people all the time!
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Re: Hi I'm new on here and currently having really bad flare

Postby ktgreen123 » Thu Dec 18, 2014 11:45 am

Hi Sarah,

Im new to the forum too and I completely understand where you are with everything. I've just gone through exactly the same thing with being off work sick. I was only diagnosed 2 months ago but have had the symptoms for 4 years! I'm also 25 and know that trying to juggle a social life, work life and try keeping your relationship together can be a challenge. These past few weeks I've learnt to say no to social events and plan my days around rest & sleep.

I was getting down on myself because I felt I wasn't achieving anything on my days off work sitting around and sleeping. But then my boyfriend said your are achieving not being ill tomorrow. This has really made me appreciate my sleep and made me say no and stop rushing around.

It is really tricky with work and I was recently signed off because I couldn't cope with having no energy and was in constant pain. I broke myself back in and took my time. Don't let others opinions get to you either. You'll be wasting valuable energy.

I was also put on naproxen when I was first diagnosed but they didn't do anything. After going back to the doctors I'm now on solpadol (codeine) daily and I was extremely reluctant to start taking because of the concerns with drowsy but wow they have given me a new lease of life! Yes I still need to rest & take it easy but they make the unbearable days bearable. I'm also on the anti depressants which too a while for me to accept but hey they help me be me and that's what matters.

I have got myself into a routine which can really help! I would try going back to work & it will be a struggle I know I've been there. Just take it easy & ask to do half shifts to start if possible to break yourself back in.

Sound silly but find a hobby which could take your mind off things. I started knitting and found it has given me a focus rather than the fibro consuming me & controlling me I'm controlling the fibro!

Hope your feeling better soon & start getting things back to some normality!

Kate x
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Re: Hi I'm new on here and currently having really bad flare

Postby Sarah_89 » Thu Dec 18, 2014 5:15 pm

Mini wrote:It was a group thing last 8 weeks if I remember, I say group but there was only 3 of us in it, all with fibro. It was good information for the pain side of it but I personally suffer more with the fatigue. Might be worth looking into if it helps you :-)

I was offered a group thing like that but didn't want to go to it. I didn't like the sound of it cos I get shy & nervous in new social situations but I was also offered a one to one pain management thing with a physiotherapist so I decided to go to that instead. I saw a woman who didn't actually give me physio which I knew from the start she wasn't going to cos I said I don't need physio cos it's just gonna make me in even more pain. She just gave me a TENS machine anyway for the pain which doesn't work. Maybe I should try the group thing... What sort of things did they suggest for the pain just out of interest? If you can remember. I just want a bit of an idea if possible so I know whether it might be worth going to for me or not. Thanks :-)
I am a fibro fighter! :-)

Keep fighting guys and gals and stay strong! Gentle hugs

Sarah x
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Re: Hi I'm new on here and currently having really bad flare

Postby Mini » Thu Dec 18, 2014 5:52 pm

We had a physio and a psychologist take our group and they were lovely. Their physio consists of just a small walk or stretching exercises, so nothing strenuous like a workout :-) we also went through relaxation and meditation, ways to arrange pillows etc in your bed to support yourself better, diet, it's a whole range of things and at least you get to meet other sufferers, I came out with quite a nice friendship with one of the other ladies too. It was quite a nice experience for me as I had a nice group and we laughed a lot at ourselves. It's obviously not everyone's cup of tea just do what makes you feel happy and what you feel comfortable with
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Re: Hi I'm new on here and currently having really bad flare

Postby Sarah_89 » Fri Dec 19, 2014 1:32 pm

ktgreen123 wrote:Hi Sarah,

Im new to the forum too and I completely understand where you are with everything. I've just gone through exactly the same thing with being off work sick. I was only diagnosed 2 months ago but have had the symptoms for 4 years! I'm also 25 and know that trying to juggle a social life, work life and try keeping your relationship together can be a challenge. These past few weeks I've learnt to say no to social events and plan my days around rest & sleep.

I was getting down on myself because I felt I wasn't achieving anything on my days off work sitting around and sleeping. But then my boyfriend said your are achieving not being ill tomorrow. This has really made me appreciate my sleep and made me say no and stop rushing around.

It is really tricky with work and I was recently signed off because I couldn't cope with having no energy and was in constant pain. I broke myself back in and took my time. Don't let others opinions get to you either. You'll be wasting valuable energy.

I was also put on naproxen when I was first diagnosed but they didn't do anything. After going back to the doctors I'm now on solpadol (codeine) daily and I was extremely reluctant to start taking because of the concerns with drowsy but wow they have given me a new lease of life! Yes I still need to rest & take it easy but they make the unbearable days bearable. I'm also on the anti depressants which too a while for me to accept but hey they help me be me and that's what matters.

I have got myself into a routine which can really help! I would try going back to work & it will be a struggle I know I've been there. Just take it easy & ask to do half shifts to start if possible to break yourself back in.

Sound silly but find a hobby which could take your mind off things. I started knitting and found it has given me a focus rather than the fibro consuming me & controlling me I'm controlling the fibro!

Hope your feeling better soon & start getting things back to some normality!

Kate x


Hi Kate :-) :wave: It's very reassuring to hear that someone knows exactly what I'm going through & especially someone who's my age. At times that can be the worst bit, feeling like no-one really gets how you feel.

Your boyfriend made a very good point. I've realised that achievements don't have to be big. I was down on myself that fibro is stopping me from achieving things but feeling how I do now compared to how I felt a week ago is a big achievement in itself! It's other people that have been making me feel like I'm not achieving anything by saying "why don't you try & get a better job?" or "why haven't you got a degree?" but people like that who judge me on those things are really not worth bothering about & it's really not worth caring what they think. I'm glad I've finally realised that now :-) I can save a lot of time & energy now I've stopped worrying about what those people think which will be good for my fibro :-P I shouldn't have to try & 'impress' these people & live up to their standards so they'll like me or accept me cos they really have no idea!

I know how much my boyfriend wishes he could take the pain away & to be honest I don't know what I would've done without him the last week. I think he finally understands it all now, well as much as he can. I couldn't even cuddle him really until yesterday, it hurt too much & I know that must've been difficult for him not being able to cuddle me & have a laugh like we usually do or take me out on dates & stuff, I just needed him there. He's stood by me through all this & I honestly don't know how I would've had the strength to try & get better if he hadn't come round mine & just been there in the same room supporting me.

I was like that with taking meds that might make me drowsy & the thought of taking anti-depressants, but I don't mind anymore. Whatever I need to take to make me sleep better & ease the pain. I'll take whatever I have to & do whatever I have to, to make myself feel better & like you said control the fibro & not let it control you :-). For example, I've started eating more whole grain food cos I've heard it can be a great help for fibro. I'm having things like brown bread & Ryvita crackers even though I don't like them that much but I'm gonna persevere with them & get used to them cos I know it's good for me.

I only work a 4 hour shift 5 days a week Mon-Fri so it should be fine going back & doing those hours, but I used to do overtime so some days I would work a 7 or 8 hour day. So I won't do any overtime until I feel up to it again. I'm planning on going back on 2nd Jan which is a Friday, I've been signed off work til then, so at least I'll only have to work 1 day & then I can have the weekend to rest before going back & doing a full week.

I don't think finding a hobby sounds silly at all. That's great advice & I'll try & find something that won't be too strenuous physically or mentally. Something that I don't always have to do for very long as well, like I can just do it for a short period of time. Cos you shouldn't push yourself to try & do something for hours on end or even an hour if you don't feel up to it, even if it's a hobby.

Thank you & I wish you all the best in coping with your fibro & keeping it under control! :-)
I am a fibro fighter! :-)

Keep fighting guys and gals and stay strong! Gentle hugs

Sarah x
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Re: Hi I'm new on here and currently having really bad flare

Postby Sarah_89 » Fri Dec 19, 2014 1:42 pm

Mini wrote:We had a physio and a psychologist take our group and they were lovely. Their physio consists of just a small walk or stretching exercises, so nothing strenuous like a workout :-) we also went through relaxation and meditation, ways to arrange pillows etc in your bed to support yourself better, diet, it's a whole range of things and at least you get to meet other sufferers, I came out with quite a nice friendship with one of the other ladies too. It was quite a nice experience for me as I had a nice group and we laughed a lot at ourselves. It's obviously not everyone's cup of tea just do what makes you feel happy and what you feel comfortable with

Ok thanks for the heads up :-) I'll give it some more thought before I decide whether or not to give it a go x
I am a fibro fighter! :-)

Keep fighting guys and gals and stay strong! Gentle hugs

Sarah x
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