Introduction

All your fibromyalgia experiences, questions and answers.

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Introduction

Postby Tsm90 » Fri Jul 22, 2016 12:42 pm

Hi everyone, i have just signed up here as i was hoping to seek some advice please.

Until about 2 weeks ago i knew nothing about FM i didn't know it even existed it was about 2 weeks ago that i befriended someone who has been diagnosed with FM . I didnt treat them any differently as i was sure thats not what they would have wanted .so i treated them the same as all my other friends. But i either did something or said something that would annoy them but they would then be ok. It was about this time they said that they had been diagnosed about a year before. Again in my nievaty i over looked this and treated them the same but still kept upsetting them . It was recently i decided to actully reseach FM and learn about it in the hope of trying to either help where i can . Or at least understand in a way to make their life easier .but the infomation i have found exsplans it but doesnt advise me on what to do . So another search on google i found this forum so i thought it would be a good idea to get some advice on do's and don'ts and some extra wisdom and knowlage on FM . I appologise to the admin team if this is out of the norm and if this isnt allowed.

Many thanks

Tsm90
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Re: Introduction

Postby Northernlass » Fri Jul 22, 2016 2:24 pm

Hi Tsm90,

It sounds to me that you're a kind considerate person and you wouldn't intentionally go out of your way to upset your friend. I think your approach is the right one to treat your friend the same as you do your other friends. Your friend might not even be upset with you, they're probably just upset and frustrated with their own pain and limitations. Of course, everyone is different. Maybe, your friend thinks you don't care if you haven't said anything. But from your post, I know that isn't true. You obviously care very much.

I have Fibromyalgia, but I don't expect my friends to treat me any differently. I would be upset if they did. I wouldn't make a thing of it at all, if a friend didn't refer to it, ever. I want to keep my Fibro out of it. And the last thing I want is to talk about it for hours lol. I don't want to depress people with my woes. And I don't tell many people what I have. But I have found that it does scare some people away. If you're worried that you have offended your friend, then just bring it up in conversation and just consistent in your friendship.

What I would advise you to remember, don't pressure your friend with too many social engagements or physical activities. People with Fibro are ill constantly with full skeletal muscle pain, fatigue and a long list of other symptoms and they don't always feel up to being social or physically active. They have to pace themselves and avoid stressful situations that can put physical demands on them that they can't cope with. Many Fibro sufferers can't get out of bed. I am that person. I go out rarely and when I do, I wish I hadn't because I suffer big time afterwards.

I don't think you can go wrong if you just keep wearing your understanding head. Also, you haven't known your friend long, and surely your friend would not expect the degree of concern that they would expect from a long term friend. I wouldn't worry about it too much. Just behave towards your friend the way you would with anyone else. I'm sure, the last thing your friend would want is to be treated any differently. Of course, a small minority of people do crave attention, and if your friend is an attention seeker and you're not referring to Fibro, then they may get upset. But that is your friend's problem, not yours. You are you and even though you want to be a good friend, you have your own life and you'll have your own problems to deal with from time to time. Maybe, just offer to help in anyway you can, or be there to talk to or whatever, but I'm sure your friend wouldn't expect you to. You haven't known each other long enough. I think your friend is very lucky indeed to have a friend who cares as much to post on a forum for advice.
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Re: Introduction

Postby Tsm90 » Sat Jul 23, 2016 10:38 am

Hi northernlass, thank you for your kind reply . Yea they have said that due to their medication it wears off and they are left with pain and discomfort in their body. they don't mean to take it out on me but they cant help it as things get on top of them. What doesnt help is as they have only recently (last year) got diagnosed with it they were quite active and enjoyed sports so knowing what they could do then and what they can do now they have the tendancy to over do it big time.

I do try to talk to them to see if there is anyway i can help ease the stress of it or to show an interest (mostly out of curiousity as i know very little about it) but they have said that the appreciate me doing research into it

I have said to them that i wont treat them any differently but we can work around what they can /should do ( remembering the spoon theory)

We have said about hanging out but its under their terms they are happier to stay at home with company rather than going out and im fine with that (i have plenty of rubbish films we can watch lol!!) they do force themselves out of bed as they have a full time job that is quite active but they seem happy and content to get out of bed for that but they do sleep a lot longer than most people after work (i think thats mostly because they have been so busy and active at work they have forgotten about it and over done it ).

Na they dont exspect it but thats just my nature (dont help im a first aider at work so i have that head on a lot of the time) i think thats why im most curious about this is because when we go out and they over exert themselves or they hurt themselves or they happen to be having one of their bad days i would like to know what i can and cant do to help . Like one of my other friends suffers from seizures and luckly i know what i can/should and cant do so when they have an episode i can help them but with fibro i am absolutely clueless lol

Thank you again for your words of wisdom and guidance

Tsm90
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Re: Introduction

Postby Claire'scomfycorner » Sat Jul 23, 2016 11:16 am

Hi Tsm90

You sound like a really caring friend. Some of us have a tendency to do too much on our good pain days (when the pain is bearable) and then suffer the consequences. Your friend needs to learn to pace herself. There are some things that you could do as a supportive friend, I've written a blog post with some suggestions that might help you: http://clairescomfycorner.com/chronic-p ... romyalgia/

Hugs
Claire
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Re: Introduction

Postby Tsm90 » Sat Jul 23, 2016 11:39 am

Hi claire
Thank you for your reply i had a look at the link you posted there are a lot of helpful tips and pointers that will help (i have saved it to my phone for quick referance).there are a few bits there im not able to do but on the other hand theres even more bits there that i can do


Got a silly question: you said in there that

"its important to show that they are not forgotten"

can fibro feel to the person as though they are isolated/alone?

As this is something i have noticed with my friend. We chat all the time on facebook and if i loose signal or my phone dies or i take too long to respond with out telling them or with out prior warning i will come back and they would have put a message up with them feeling that they are being annoying and that i dont want to talk to them anymore .But as soon as i get back and i exsplain why i left with out saying why they are fine after that. Is this a common thing?
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Re: Introduction

Postby Claire'scomfycorner » Sat Jul 23, 2016 11:48 am

Hi

Sometimes people with fibro can feel alone, isolated and misunderstood. We can feel that those closest to us don't understand our pain and frustrations. It can therefore be a very isolating illness. Your friend's insecurity may be because she feels a 'burden' on her friends, she just needs a little patience perhaps. Underneath all that pain, fatigue and frustration is still the friend you know and love.

I hope that helps!
Claire
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Re: Introduction

Postby Tsm90 » Sat Jul 23, 2016 11:59 am

Hi claire,

So me taking the time to look into and understand fibro could help them feel better about themselves and happy

Also been thinking can fibro get worse over time like MS or is it one that just hits hard but stays the same?

thank you for everyones wisdom,guidance and kind words.

Tsm90
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Re: Introduction

Postby Claire'scomfycorner » Sat Jul 23, 2016 12:05 pm

Hi

Yes, definitely your friend will appreciate that you have taken the time and effort to understand fibro. It's not an illness that is seen as progressive but lots of people say, me included, that we've gotten worse over time.

Have a great day :-D

Claire
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Re: Introduction

Postby FluppyPuffy » Mon Jul 25, 2016 12:18 pm

You come across as a very lovely~sounding friend, the sort that everyone/anyone would like to have in their life.

We're not easy to get to know at times, thsnks to the delights that FM dumps on us, which can often be misinterpreted as not being interested in what may be happening around us, or that we are aloof, even snooty as, at times, sounds, lights, smells etc can just overwhelm us, and moreoften than not, we find ourselves moving away from large groups/crowds, nt because we don't want to be involved with what is happening, but because thigs have become overwhelming and we need a bit of quieter time to get the over~stimulations back to something more manaeable level~wise.
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.

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