Recently diagnosed

Karen86

New member
Joined
Jan 31, 2020
Messages
5
Reason
DX FIBRO
Diagnosis
01/2020
Country
UK
Hi all,

I have been struggling with chronic pain for many years, I have had mri scans etc etc.
finally been diagnosed with something which was Fibromyalgia.
My worst pain is at night hardly sleep and is so painful I don’t know what to do with myself! My worst pain is in my chest, shoulder blades. Ribs and hips. It’s so hard to sleep and to get up in the morning hurts so much.
How do you all carry on working etc with this? I’m so tired all the time it gets you down.
 

sunkacola

Senior member
Joined
Dec 2, 2016
Messages
403
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Hi Karen, Yes, it is hard. I utterly sympathize with what you are saying. That's why there's a forum like this - because people not struggling with this really have no idea, and don't understand. We cannot really expect them to - so we "talk" to each other here.

I guess in answer to your question I would have to say I carry on because I have no choice. Nobody else is going to make a living for me, or clean my house, or feed my animals and take care of all the things that need my care. I am on my own, so I have to do it.

sometimes I can't do as much as other times....I have learned that I have to pace myself and take care of myself and things sometimes take longer than they used to. I no longer have a spotless house all the time; I have learned to live with a bit of clutter or dog hair a few days longer than I used to if I am not up to cleaning. I have had to relax my standards on some things that don't matter as much as other things do, in order to be sure of getting the important things done.

But in that process I have also endlessly researched and experimented with different activities, medications, and ways of taking care of myself that help me (or don't). I am finding out what works to maintain the balance I need in my life. This is the best thing you can do for yourself because no one but you knows how you feel inside. I have learned to listen to my body and know what it needs. Of course, this changes all the time, so I stay alert to my body and adjust what I am doing. One thing I have found is I really need 9 hours of sleep every night. This curtails some activities, but the result when I can get it is worth it. And, very important, I am removing from my life things that cause undue stress.
 

Karen86

New member
Joined
Jan 31, 2020
Messages
5
Reason
DX FIBRO
Diagnosis
01/2020
Country
UK
Hi Karen, Yes, it is hard. I utterly sympathize with what you are saying. That's why there's a forum like this - because people not struggling with this really have no idea, and don't understand. We cannot really expect them to - so we "talk" to each other here.

I guess in answer to your question I would have to say I carry on because I have no choice. Nobody else is going to make a living for me, or clean my house, or feed my animals and take care of all the things that need my care. I am on my own, so I have to do it.

sometimes I can't do as much as other times....I have learned that I have to pace myself and take care of myself and things sometimes take longer than they used to. I no longer have a spotless house all the time; I have learned to live with a bit of clutter or dog hair a few days longer than I used to if I am not up to cleaning. I have had to relax my standards on some things that don't matter as much as other things do, in order to be sure of getting the important things done.

But in that process I have also endlessly researched and experimented with different activities, medications, and ways of taking care of myself that help me (or don't). I am finding out what works to maintain the balance I need in my life. This is the best thing you can do for yourself because no one but you knows how you feel inside. I have learned to listen to my body and know what it needs. Of course, this changes all the time, so I stay alert to my body and adjust what I am doing. One thing I have found is I really need 9 hours of sleep every night. This curtails some activities, but the result when I can get it is worth it. And, very important, I am removing from my life things that cause undue stress.
Hi Karen, Yes, it is hard. I utterly sympathize with what you are saying. That's why there's a forum like this - because people not struggling with this really have no idea, and don't understand. We cannot really expect them to - so we "talk" to each other here.

I guess in answer to your question I would have to say I carry on because I have no choice. Nobody else is going to make a living for me, or clean my house, or feed my animals and take care of all the things that need my care. I am on my own, so I have to do it.

sometimes I can't do as much as other times....I have learned that I have to pace myself and take care of myself and things sometimes take longer than they used to. I no longer have a spotless house all the time; I have learned to live with a bit of clutter or dog hair a few days longer than I used to if I am not up to cleaning. I have had to relax my standards on some things that don't matter as much as other things do, in order to be sure of getting the important things done.

But in that process I have also endlessly researched and experimented with different activities, medications, and ways of taking care of myself that help me (or don't). I am finding out what works to maintain the balance I need in my life. This is the best thing you can do for yourself because no one but you knows how you feel inside. I have learned to listen to my body and know what it needs. Of course, this changes all the time, so I stay alert to my body and adjust what I am doing. One thing I have found is I really need 9 hours of sleep every night. This curtails some activities, but the result when I can get it is worth it. And, very important, I am removing from my life things that cause undue stress.
Thank you,

that’s my problem my pain seems to be at its worst at night through out the whole night, so I’m not getting the sleep I need.

my job is very active, I massage, reflexology and run classes so it’s quite hard to manage it all.
I’m trying my best I have good days to stay positive and bad days where I’m in so min pain I cry!

it’s good to know there this to talk to people.

karen x
 

sjbrown

Active member
Joined
Jan 27, 2020
Messages
49
Reason
DX FIBRO
Diagnosis
01/2020
Country
US
State
ME
Hi Karen - I get it too. I do not sleep well and havent for some time. I work full time and in the last year have missed alot more time than normal. This had been a real struggle for me. Getting diagnosed didnt really make it any easier as I had already been living with it for over a year. Now its trying to find out what will help. Already tried one med and that didnt give any noticeable help. Now to try another...........I hate the thought of taking medication but found myself needing to try something. I have seen that some only have to take meds for a while and not like forever. Having support here has helped................it helped me see others have experienced the exact same symptoms and dr visits and tests etc. It does help knowing we are not alone with this..........just wish there were a better and more definitive way to treat it!!
 

Janey21

New member
Joined
Jan 3, 2020
Messages
7
Reason
DX FIBRO
Diagnosis
12/2018
Country
UK
Hi Karen , I reluctantly took amitriptyline for my migraines and stopped it only to find i could hardly walk and ached all over. Dr said the amitriptyline was helping my fibromyalgia. I started it again and what a difference. I only take 25mg but it really made such a difference . on t really like taking drugs but sometimes you need to . Hope this helps you . I also get Bowen therapy
 

Karen86

New member
Joined
Jan 31, 2020
Messages
5
Reason
DX FIBRO
Diagnosis
01/2020
Country
UK
Hi Karen - I get it too. I do not sleep well and havent for some time. I work full time and in the last year have missed alot more time than normal. This had been a real struggle for me. Getting diagnosed didnt really make it any easier as I had already been living with it for over a year. Now its trying to find out what will help. Already tried one med and that didnt give any noticeable help. Now to try another...........I hate the thought of taking medication but found myself needing to try something. I have seen that some only have to take meds for a while and not like forever. Having support here has helped................it helped me see others have experienced the exact same symptoms and dr visits and tests etc. It does help knowing we are not alone with this..........just wish there were a better and more definitive way to treat it!!
Thank you for replying,

I tried acupuncture today and have been given amtriplyne at night time.
The worst pain a get is in my chest, shoulder blades and ribs and it get worse in the evenings all night and mornings, through the day it seems to die down but where I’m so tired it’s so hard to keep going.
It’s so lovely for people to replying.
I hope your ok

karen x
 

Karen86

New member
Joined
Jan 31, 2020
Messages
5
Reason
DX FIBRO
Diagnosis
01/2020
Country
UK
Hi Karen , I reluctantly took amitriptyline for my migraines and stopped it only to find i could hardly walk and ached all over. Dr said the amitriptyline was helping my fibromyalgia. I started it again and what a difference. I only take 25mg but it really made such a difference . on t really like taking drugs but sometimes you need to . Hope this helps you . I also get Bowen therapy
This has helped me thank you,

I have started to take amitriptyline 20mg every night, it sends me off to sleep but I still wake up with the pain.
How long does it take for it to work properly?
 

Janey21

New member
Joined
Jan 3, 2020
Messages
7
Reason
DX FIBRO
Diagnosis
12/2018
Country
UK
Not sure as I was taking it for migraines and only realised it helped with pain when I stopped it . Don't think it took too long when I went back on it but my memory is terrible . It doesn't send me off to sleep though. Hope it starts to help you soon .
 
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