I dont want to feel like this! - Fibromyalgia Acti...

Fibromyalgia Action UK

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I dont want to feel like this!

charlii profile image
13 Replies

Im really sorry if this comes across as rude because i certainly dont mean it to but the more i read on this site the more i have to accept that this is me, i knew i was poorly but the symptoms didnt make sense...they are so (oh my...cant even think of the word but i do know it!)...Ah! Got it...random! Yeah, i have so many of your symptoms too but i was kind of hoping that i was maybe a hypocondriac or similar...but i think now i have to face the ugly truth...I have fibromyalgia!!!!!! Why??? What did i ever do? Why does it seem to affect nearly all of my body? Im only 40 and have got so much to do but i cant think beyond my next round of pain meds!!!!! Then comes the guilt...im not diagnosed with cancer (God forbid) and i have a lovely family so things arent so bad hey? WRONG!!!! At this moment things seem really bleak and i feel angry and selfish and a burden and so many other negative things......i dont want to be trapped inside this alien body and mind, i want to be normal and healthy and full of life....im so sorry for sounding off but im feeling really sorry for myself tonight and my family who have to put up with this as much as i do x

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charlii profile image
charlii
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13 Replies

hi and please dont worry about soundig off i was like it llast night , i am 47 and i too think why me at times but then why not me ? and i too feel guilty i say same as you yeah i got this BUT i aint now been given 3 months to live now thay is the pits so we have to jus think how lucky ewe are and focus on what we can do at the time some days are onna be better than others and when they are we have too make most of them and when ther not well jus do what we feel like doing there really is always somene worse off but you take care and by the sounds of it you have a very supportive family unit around you like i do and friends some people havent got that you take care and hope to chat again love diddle x

Ang01 profile image
Ang01

Dont worry Charlii, it almost feels like a bereavement for the life we had but we have to make the best of a bad job and take the opportunity to do things when we are well. The main thing is to try and get your symptoms under control with the right medication and get the help you need with things. There is a lot I can do and some things I can't do and these things I have to accept.

You can always come onto this site and find people who understand what you are going through cos we have all been there so keep your chin up and look after yourself. Take care, Angela xx

Ballerina profile image
Ballerina

Hia Charlii, I think a lot of us on this site can say we have all felt sorry for ourselves at one time or another, and thats ok. I'm like you, i've led a charmed life, I'm married to a fantatic man with two wonderful children and i have a great set of family and friends. But all that means FA when the pain is so bad day after day and you're just so exhausted you cant get through the day, let alone enjoy life!

I've had FMS for over 17 years so I'm pretty used to it now but it really helps if your head is in gear. I've tried dozens of medications over the years but ive come to the conclusion that i'm a much happier person when I'm slightly sedated! A combo of painkiller, nerve blocker and anti depressent is currently making me feel the best I have in years, even considering part time work again.

At least you have a diagnosis and somewhere to rant now, years ago, you really were considered a hyperchondriac as Doctors knew nothing or very little about fibro. My advise: dont waste time trying to fight it, accept it and build a life (including meds) that allows for your FMS. Give everyone you know a fibro fact sheet and tell them that you dont need pity but hopefully after reading about the condition they will understand what you are going through.

Best of luck, oh and it also helps if you can find someone in your area that has FMS, so if you do want to talk, rant, complain about it, then you can do it with someone who understands. Hope you get sorted hon x

siver52 profile image
siver52

We all feel like you do at some point. Hopefully it will lift. I have had this for 10yrs + and I have days when I want to scream at the world with the frustration of it all. I think its important to accept it if you have fibro otherwise you run the risk of over doing things, not pacing yourself and making things worse. hugs xx

charlii profile image
charlii

Thank you so much everyone.....guess im just a bit down in the dumps with it all at the mo but hey! Will pull myself together, but thank you all for your kind words and support, at least im not alone in this fight x

SuzySparkle profile image
SuzySparkle in reply to charlii

Chariii you are so not alone - I just got my diagnosis last month. Initially, was grateful that I wasn't making it all up - but right now - I feel just as you described - I am angry and frustrated, and I want my life back - I think it is important to go through this phase though... I have a nursing background agree that it is a grieving process, and recognising the anger is the first step to getting it into perspective. Doesn't change the fact you have revisit the life we once enjoyed and find enjoyment in the life ahead ~ somehow??? I have just started counselling and this was one thing she said to me, that despite thinking ' how do you know?' I think she is right and I need to get my head around that one. with all good wishes and hugs x SuzySparkle (sparkle is temporarily lost i the fog but I am looking for it everywhere!!) :-)

jazher profile image
jazher

Hi charlii,

I am sorry you are feeling down. :(

I have plenty days like you and you do get passed it, the best thing to concerntrate on doing now is getting a right cocktail and doseage of meds that suit you and pacing is the absolute key.

I know it is hard and it isnt nice on your family but hoepfully a prblem shared is a problem halved and i do hope writing this all down will help.

we are all her for you, hugs, kel xxxx

retiredpharm profile image
retiredpharm

Sorry to see you getting frustrated at the pain and other sympoms you have. A lot of other people think we are making it up.we all get wound up and this site is somewhere you can sound off. This site has reminded me that there are a lot of people a lot worse off than me and the other - a very pleasant suprise - that research is now coming up with more clinical evidence and diagnosis, a brain scan pattern that definately relates to fibro.

painB4painafter profile image
painB4painafter

Hello! I, like a lot of others here, am so sorry that you feel the way you do but it's OUR RIGHT to feel this way. I was diagnosed at the age of 40 after losing over 200 pounds. I was going to school for Administrative Law. I had all plans and intentions of getting that Associates degree and moving on with a good life, a GOOD PRODUCTIVE life. Boy was I wrong. I was planning for so many things and now it seems as though I have been let down. I am always wondering what I've done so terrible in my lifetime as to be one that has been dealt such a losing hand in the game of life. I look around me and I see and know of others that are so mean, cruel, evil and cold to people and yet they seem to be the people that are the "happiest" to say the least. I have the same state of mind as you do and I don't see it going anywhere any time soon. I do wish you all the best as I wish the same for all of us that suffer in such manner. You have the right to express your emotions like the rest of us and you have the right like the rest of us to continue to seek hope. I find myself sitting before GOD on a daily basis waiting for an answer to my question.

chezmaniac profile image
chezmaniac

Please do have a rant,it helps i promise. Its horrid if you still have so many things to do.I am 39 and ive had it since i gave birth to my now 4 and a half year old. I am now a full time mum to her and a 3 yr old and a full time carer to my husband who has young onset parkinsons. Life sucks sometimes. Hubby used to say "why me ?" and i used to say "why not you,what makes you so special?" I actually found it a relief to get a diagnoses,i wasnt going mad after all.Some days are worse than others but we get through because we have too. Giving up is not an option.I have started up a support group because there was none in our area and that means that we have added to our own support network too. Its amazing how much it helps to hear someone else say"i get that "or "have you tried this".This isnt the end of your life its just a new chapter. Try to concentrate on what you can do not what you cant,try new things like learn a musical instrument or try art( i was rubbish at school but people tell me i paint good).Use things that help where you can and ask people for help when you need to,you get used to it eventually. I was always a giver now im a taker when i need to be.Now until there is a cure,live life,love well and fight anyone who tries to stop you.xxxxx

vcoke profile image
vcoke

oh I empathise with you, I have been feeling so down of late. Went shopping with my sister today, she was happy buying pretty bras (which I can't wear) and other bits and bobs which I can't afford now I have lost my little bit of benifits. Came home and didn't know where to put myself, everything hurts. So went to bed, sleep when i can get it seems to be the only escape. is there ever going to be a light at the end of the tunnel.

charlii profile image
charlii

I feel terrible now having a rant...there are so many people worse off than me and here i am bathing in self pity and im ashamed. I wish i could make everything better for all of you but i know i cant..i hate to see you all in so much pain yet i feel so sorry for myself too (does that make any sense?)....i had so much going for me and i feel its all been snatched away and ive done nothing to deserve this and neither have you all...its just so unfair!!!!!!!!!

charlii profile image
charlii

Ballerina, thats the best adivce ive heard, i will give my family and friends a sheet on fibro and i may include the blog "Do's and dont's in dealing with someone with fibro."(see blog) Much love and gentle hugs to you x

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