Its a pain in the bum....

All your fibromyalgia experiences, questions and answers.

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Its a pain in the bum....

Postby toni » Sun Sep 15, 2013 12:18 pm

I've had fibromyalgia for about a year. I'm always in a lot of pin and at one point it got to me so much that I attempted to take my life... things have got better recently since my boyfriend came a long he's helped me so much and has always been there for me i don't know where I would be without him... I've had a rough time I've been through a lot I've been bullied and that made things ten times harder... things got real bad when I started losing my hair due to stress and things I'm still losing it and the doctor say if I can't de-stress I could be bald by the end of the year... but I still can't help but worry... my boyfriend as been so supportive even though he's going through so much himself and he suggested this so I could vent how I feel and speak to people who are go in through the same things I am. I could rely do with some advice on coping I used to be quite sporty and now all I can do is walk and small amount of swimming some days I can do up to 100 lengths other days 3 lengths. Please can I have some guidance thanks guys much appreciated

Toni x
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Re: Its a pain in the bum....

Postby Garyl » Sun Sep 15, 2013 12:46 pm

Toni sure is a pain in the something, been a sufferer for 5 years and struggle daily, but have kept going and do my best if you have support you are lucky and it is good most of my support come from online friends.

Just do your best to help yourself is all you can really do, and hope you do not end up like myself, have gone from walking with one stick to two and now a three wheeled walker which i find a god send.

The main thing is to try not let Fibromyalgia control your life
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Re: Its a pain in the bum....

Postby KateTMcC » Sun Sep 15, 2013 1:11 pm

Hi there, sorry to hear you're going through so much, Fibro is horrible (putting it mildly), hopefully researchers are getting closer to figuring it out.

I have pain every day, and I have recently been trying to reprogramme my brain. Pain is pain no matter what and it bloody hurts. Normally the body gives pain to tell us something is being damaged, and we should stop whatever it is that's causing the pain, so instinctively this is what we do. Fibro however, is different and the pain we get isn't there to tell us something is being damaged. So, what I try to do is (and it's really, really hard - understatement), try to ignore the pain and carry on through it, some days of course this is easier than other days, some days I can't do it. On the other hand, I wonder if this is a bad idea as I could then have a pain that isn't associated with the fibro and I may just end up trying to ignore it - but hey, that's what the doctors do if you have fibro isn't it, anything you see the doctor about, once they see you have fibro, that's the explanation, they don't check for anything else.

Sounds like you have fantastic support there :-)
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Re: Its a pain in the bum....

Postby toni » Sun Sep 15, 2013 1:15 pm

Garyl wrote:Toni sure is a pain in the something, been a sufferer for 5 years and struggle daily, but have kept going and do my best if you have support you are lucky and it is good most of my support come from online friends.

Just do your best to help yourself is all you can really do, and hope you do not end up like myself, have gone from walking with one stick to two and now a three wheeled walker which i find a god send.

The main thing is to try not let Fibromyalgia control your life



Thank you so much I'm 16 so I just feel frustrated I feel like the doctors don't listen and they are so patronising I hardly sleep anymore so could do with just few nights sleep (: I will try not to let it control my life and wow five years how have you coped all those years I barely coped one year thank you again x
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Re: Its a pain in the bum....

Postby toni » Sun Sep 15, 2013 1:20 pm

KateTMcC wrote:Hi there, sorry to hear you're going through so much, Fibro is horrible (putting it mildly), hopefully researchers are getting closer to figuring it out.

I have pain every day, and I have recently been trying to reprogramme my brain. Pain is pain no matter what and it bloody hurts. Normally the body gives pain to tell us something is being damaged, and we should stop whatever it is that's causing the pain, so instinctively this is what we do. Fibro however, is different and the pain we get isn't there to tell us something is being damaged. So, what I try to do is (and it's really, really hard - understatement), try to ignore the pain and carry on through it, some days of course this is easier than other days, some days I can't do it. On the other hand, I wonder if this is a bad idea as I could then have a pain that isn't associated with the fibro and I may just end up trying to ignore it - but hey, that's what the doctors do if you have fibro isn't it, anything you see the doctor about, once they see you have fibro, that's the explanation, they don't check for anything else.

Sounds like you have fantastic support there :-)


Thank you so much yes its very hard to ignore pain I'm only 16 and there have been days I feel 80 there have been days I've hardly managed to walk up stairs or get out of bed. I will keep trying to ignore the pain see if I can (: thank you for your advice x
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Re: Its a pain in the bum....

Postby dallasuk » Sun Sep 15, 2013 1:30 pm

Hi Toni.

I'm sorry you are going through this much pain, i understand totally was diagonosed with fibro in 2002 (but they think ive had it for a lot longer) and to put it mildly it darn well sucks.
Im lucky have a wonderful partner & some brilliant friends (who helps as much as they can)
I would not wish fibro on my worse enemy everyday is a struggle but try not to let it beat you or control you, i try to smile everyday & be thankful for still being here, venting often helps.
Take care hun :) I'm always around to listern.

Gentle hugs
Tracy x
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Re: Its a pain in the bum....

Postby toni » Sun Sep 15, 2013 1:37 pm

dallasuk wrote:Hi Toni.

I'm sorry you are going through this much pain, i understand totally was diagonosed with fibro in 2002 (but they think ive had it for a lot longer) and to put it mildly it darn well sucks.
Im lucky have a wonderful partner & some brilliant friends (who helps as much as they can)
I would not wish fibro on my worse enemy everyday is a struggle but try not to let it beat you or control you, i try to smile everyday & be thankful for still being here, venting often helps.
Take care hun :) I'm always around to listern.

Gentle hugs
Tracy x



Thank you so much Tracy yes I've officially been diagnosed a year but they reckon I had it longer then that! Im finding it hard to do simple things like cleaning the bathroom I've been given exercises to do but can hardly do them as it causes so much pain :/ I'm just getting to the end of my tether would just like rid of this and have a normal life again thank you for your reply Tracy much appreciated x
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Re: Its a pain in the bum....

Postby not.giving.in » Sun Sep 15, 2013 1:47 pm

I feel for you, Fibro is never fun. Part of the problem is that it is totally unpredictable, though you can usually rely on getting a flare up if you push your body too hard at anything. Finding the balance and listening to your body is a key part of managing your illness. I find docs usually say that it's up to me to learn to manage it, but they don't give you any clues on how to do it. Tune in to your body as much as you can and give it what it needs, rest, food, feet up, etc., make sure you are properly hydrated.

On the mental front, your experience of life comes from what you focus on, so I look for the good in everything and think how lucky I am. That is easy to do if you see someone in a wheelchair or suffering from chemo side-effects, but every day I think how lucky I am to have food and clean water, enough money [if I'm sensible with it lol!], a warm bed, a roof over my head, I can talk [though sometimes I talk rubbish if the dysphasia creeps in :lol: ], I can walk, some days I can even sing, though not often as the fibro affects my voice box. I feel lucky if the sun shines on me, if I see a butterfly, a swallow, hear the swifts calling, if I have chocolate :crazy: . I'm lucky I have a computer, a TV, a wonderful hot shower that kills some of the pain in the morning. It took me a long time to learn to look at life this way, but now it's amazing and makes me enjoy the best bits of life and keeps me going through the bad days. On the bad days sometimes you just have to survive, just hang in there and keep going till things improve. As Winston Churchill said, "If you're going through hell, keep going". If you can accept that your body has problems and you need to work with it, then you will save the energy you use being fed up with its weaknesses and use the energy for something more fun.

Wishing you healing and hoping you find a way forward,
Gentle hugs
Jules
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Re: Its a pain in the bum....

Postby dallasuk » Sun Sep 15, 2013 1:50 pm

Your welcome Toni,

I hate all the frustrations fibro brings :( I once did embrodiery and was a avid book reader in the last few years ive had to limit both due to not being able to hold things and it gets to me a lot :( (some days i feel a hell of a lot older than 41 :( )

Gentle hugs and crying on my mans shoulder often helps im just so glad he is understanding. Finding someone to talk to is always good hun it does help also it might sound strange but knowing you are not alone helps me a lot, i guess its knowing someone somewhere does understand.

Tracy xx
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Re: Its a pain in the bum....

Postby toni » Sun Sep 15, 2013 2:01 pm

not.giving.in wrote:I feel for you, Fibro is never fun. Part of the problem is that it is totally unpredictable, though you can usually rely on getting a flare up if you push your body too hard at anything. Finding the balance and listening to your body is a key part of managing your illness. I find docs usually say that it's up to me to learn to manage it, but they don't give you any clues on how to do it. Tune in to your body as much as you can and give it what it needs, rest, food, feet up, etc., make sure you are properly hydrated.

On the mental front, your experience of life comes from what you focus on, so I look for the good in everything and think how lucky I am. That is easy to do if you see someone in a wheelchair or suffering from chemo side-effects, but every day I think how lucky I am to have food and clean water, enough money [if I'm sensible with it lol!], a warm bed, a roof over my head, I can talk [though sometimes I talk rubbish if the dysphasia creeps in :lol: ], I can walk, some days I can even sing, though not often as the fibro affects my voice box. I feel lucky if the sun shines on me, if I see a butterfly, a swallow, hear the swifts calling, if I have chocolate :crazy: . I'm lucky I have a computer, a TV, a wonderful hot shower that kills some of the pain in the morning. It took me a long time to learn to look at life this way, but now it's amazing and makes me enjoy the best bits of life and keeps me going through the bad days. On the bad days sometimes you just have to survive, just hang in there and keep going till things improve. As Winston Churchill said, "If you're going through hell, keep going". If you can accept that your body has problems and you need to work with it, then you will save the energy you use being fed up with its weaknesses and use the energy for something more fun.


Wishing you healing and hoping you find a way forward,
Gentle hugs
Jules


Hey Jules thankyou for your reply (: Winston Churchill is a wise man I man I do admire I do accept my body has problems in it just wished it didnt would just like a break from it just one day x
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Re: Its a pain in the bum....

Postby toni » Sun Sep 15, 2013 2:05 pm

dallasuk wrote:Your welcome Toni,

I hate all the frustrations fibro brings :( I once did embrodiery and was a avid book reader in the last few years ive had to limit both due to not being able to hold things and it gets to me a lot :( (some days i feel a hell of a lot older than 41 :( )

Gentle hugs and crying on my mans shoulder often helps im just so glad he is understanding. Finding someone to talk to is always good hun it does help also it might sound strange but knowing you are not alone helps me a lot, i guess its knowing someone somewhere does understand.

Tracy xx


I do get a lot of hugs from my man but I feel bad crying on him as he has a lot of his own problems I can hardly hold books anymore so I have a kindle which I find easier as I can balance it on my lap... my bf is very supportive and I do my best to support him it has helped knowing I'm not alone thanks again xx
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Re: Its a pain in the bum....

Postby *Lisa* » Sun Sep 15, 2013 2:16 pm

Hi Toni,

I have had fibro for 14 years and my daughter who is 17 was diagnosed with fibro at 16.

From what i read it sounds like you need to concentrate on pacing yourself. You say that some days you can swim 100 lengths and others just 3

What i would suggest is too not do the 100 even if you feel ok because we all tend to be guilty of doing too much on a good day then up paying for it after.

CBT therapy in chronic pain i feel would benefit you as this will help you pace and give you tchniques into managing and controling fibro as best you can.

Ask your GP for more information.

Are your parents supportive? do they inderstand? i know you say your BF is a great help and thats fab! :-D he was right in guiding you to us as there is lots of support/help/advice and information here.

Are you still at school ? college ?

Stress can effect hair loss and i went thro a time where mine started to fall out but luckily it stopped after a while. You need to look into what is stressing you out and how this can be sorted out.

i understand fully how a chronic illness can effect some one so young as i am helping my daughter through many things.
As a Public Moderator & Admin 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...Lisa
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Re: Its a pain in the bum....

Postby toni » Sun Sep 15, 2013 2:24 pm

*Lisa* wrote:Hi Toni,

I have had fibro for 14 years and my daughter who is 17 was diagnosed with fibro at 16.

From what i read it sounds like you need to concentrate on pacing yourself. You say that some days you can swim 100 lengths and others just 3

What i would suggest is too not do the 100 even if you feel ok because we all tend to be guilty of doing too much on a good day then up paying for it after.

CBT therapy in chronic pain i feel would benefit you as this will help you pace and give you tchniques into managing and controling fibro as best you can.

Ask your GP for more information.

Are your parents supportive? do they inderstand? i know you say your BF is a great help and thats fab! :-D he was right in guiding you to us as there is lots of support/help/advice and information here.

Are you still at school ? college ?

Stress can effect hair loss and i went thro a time where mine started to fall out but luckily it stopped after a while. You need to look into what is stressing you out and how this can be sorted out.

i understand fully how a chronic illness can effect some one so young as i am helping my daughter through many things.


Hi Lisa thank you for your reply I will definitely ask my doctor about CBT therapy. Thank you for your advice (: if your daughter has it does that mean it can be passed genetically? I read an article saying it can but wasn't sure whether to believe it or not... I wish you daughter and yourself luck I have been told theres a chance I won't have it for all my life but its more likely I will be stuck with it for the rest of my life. Thanks again for your help (: xx
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Re: Its a pain in the bum....

Postby Garyl » Sun Sep 15, 2013 2:45 pm

Toni has been a struggle and today is a bad day for me hands so painful but am determined not to give in , Anyone with help and support nearby are lucky mine is mainly from online friends and this forum.

This chronic illness will not beat me nor will the Government
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Re: Its a pain in the bum....

Postby toni » Sun Sep 15, 2013 2:52 pm

Garyl wrote:Toni has been a struggle and today is a bad day for me hands so painful but am determined not to give in , Anyone with help and support nearby are lucky mine is mainly from online friends and this forum.

This chronic illness will not beat me nor will the Government



Your so strong government is crap lol sorry today has been a bad day for you I'm the same I'm even finding it hard to type keep strong (: xx
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