Fibromyalgia,2: Today i have been married for 28yrs and... - NRAS

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Fibromyalgia,2

sylvi profile image
14 Replies

Today i have been married for 28yrs and i have enjoyed it. More so now i know i'm not going insane. Last night i had to see the gp about pills to take. I've been put on excuse spelling, amytriptylene, pergaboline at the moment. There are more drugs they want me to take, but for the moment doc whats to see how i am on these ones. I am feeling more optimistic because someone actually believes me. The girls on the desk at the docs also gave me a copy of the letter than hospital have sent. Its 3 pages long and the doc is also not happy with my knee and he wants me to be referred for a second opinion. This knee has been the root cause of all my troubles since i fell down the stairs 3yrs ago.

I am now very tired and sore so i've had a bath and i'm now going to get into bed to rest. To all your lovely folk out there who are still struggling i say don't give up, i just sorry its took me so long and i hope that it doesn't take you so long. I know i'm not out of the woods yet, but just knowing whats wrong is very uplifting. I wish it was as easy for some of you.

Bed for me goodnight people.

Sylvia. xx

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sylvi profile image
sylvi
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14 Replies

Night Sylvia x

Night hun x x

Judi profile image
Judi

Hi Sylvia - sometimes 'a little goes a long way' as they say. Just knowing you are being taken seriously and that help may be on the way (at last) can give the spirits a boost. Hope you slept easier.

Judi

sylvi profile image
sylvi

Hello everyone,

julie,ra-fibro, you both made me smile when i saw you messages. Its nice to know your not alone, thank you. Judi, yes it has helped, at last something is being done even if it takes a long time to get sorted, i'm happier knowing its being done.

Had a bad night last night and this morning i ache. I'm very tired, but i know whats wrong so i'll just have to take it easy today. Thats easier said than done, but i will try.

Its uplifting to know that other people care about you even if we haven't met, which would be nice if i could meet you all.

Sylvia. xx

Sharon56 profile image
Sharon56 in reply to sylvi

Hi Sylvia glad things are getting sorted for you. I know what you mean about feeling like you are going crazy when no one seems to know whats wrong with you. You look after yourself. My Mum had polymyalgia for many years along with all her other problems. Congratulations on your wedding anniversary too. Sharon

Hi Sylvi, It took me more than twelve months to be diagnosed so I know what you went through. I've always said to people on here not to give up and to follow your instincts, if you think something is wrong it usually is. It's always best to keep on at your GP/consultant they are the ones to help get your diagnosis , some people think they are being a nuisance, but the thing is if we don' tell them how we feel how are they supposed to now! They aren't mind readers after all. Our blood test results are only half the picture the other half comes from us, the patient!

I'm happy for you that you finally have the diagnosis that you have been waiting for, at least you can get on with some sort of treatment.

I too take Amitriptyline and find them very good, I think you have to find the right dose to suit you as they can make you feel very washed out the next day.

Take care Sylvi.

mand xx

sylvi profile image
sylvi

thank you ladies, if anyone got any tips for i would appricate it. This is another ball and i don't really know what to do and where to go. I've been given a couple of sites to visit and will look at them this week. Today i'm exhausted, it changes from day to day.

Sylvia. xx

englishmama0 profile image
englishmama0

Firstly, congratulations on your wonderful years of marriage.

I hope that you will be feeling better and getting sorted. Always PUSH if your not happy ..............

Pam

sylvi profile image
sylvi in reply to englishmama0

thank you pam. I've been at the hospital every time i was down there. Feel better just knowing, i can cope now as i know that i will have to rest more than i've been doing. Never thought that i would get to 28yrs married, but i've never regretted marrying bob. He's been a wonderful husband to me, we've had a lot of hard times with health, but we've come through it though.

Sylvia. xx

congrats on the special aniversairy and on getting some new medication, good luck.. it should all help you feel a bit better, I havent ever lost my fatigue completely but every one is different!. I fall asleep in the afternoon, and or go to bed early..

sylvi profile image
sylvi

Thank you summer, we had a lovely day and a meal. I was at walsgrave hospital today for my eyes now have a black eye.. One of the nurses who was with my in theatre with me has fibro and she said it will get easier and i will be able to live with it on the medication, got a long way to go before that happens i think,but at least i;m getting there. Thats the important bit. I'm always in bed early, i watch tv in bed in the evenings from my bed.I had my eyes cautarised to stopped them from drying out. I hope it works. It seemed to when doc put bungs in the tear ducts so now we wait and see.

Sylvia. xx

judith-r profile image
judith-r

Hi Sylvia, I have Fibromyalgia too, so i know how you feel, with the RA and the Fybro it can be a real pain .... I am on different meds to you for the fibro but i think they have done the pain relief to help the RA as well, most of the time im coping and as i put it plodding on.

I hope you feel better soon and remember lots of rest.

To everyone who saw my blog a while back about becoming a volunteer in Lincoln for NRAS Yea i am now one, we have to get a group properly up and running so when i can get to meet Helen our co.ordinator and any other volunteers in lincoln our group should be off the ground very soon, heres hoping.

Love and best wishes to all

Judy

sylvi profile image
sylvi

Thank you judy, this is a new ball game to me. I always said that i wouldn't give in to the ra, it was something i wasn't going to let beat me. This fibro is another game altogether. This feels worse than the ra or is it just me. I just don't know where i hurt the most, thats the trouble. This has taken months for someone to finally listen to me. I was in bed when ra nurse rang up and i was sobbing down the phone to her, its thanks to her that i saw another doc as mine was on holiday. I think she realised something was wrong and she knew this doc would know what it was. I also believe that she had a good idea as well.

The rest is something i don't do very well, if i feel good i tend to go at and get things done. Sad to say thats the wrong approach, so i've got to look at this problem from a different angle. Any advice would be welcome.

I hope that you get your group has lots of success, there is nothing in my area for ra, i don't know yet about the fibro as its still new to me and i'm still finding out about it. I'd heard about it on here, but i didn't take a lot of notice as i thought it was my ra.

Thank you.

Love

Sylvia

judith-r profile image
judith-r

I know it effects alot of people in different ways, depending on how stressed you are to changes in the weather, the pain levels go to extremes like hyper sencitivity to pain to things that touch you that shouldnt hurt but does, only people with fibro will know what i mean by that. Let alone the stiffness you can get with RA you can get very stiff with fibromyalgia too especially first thing in the am. It can also give you muscle spasms. Then there is the fatigue when you wake up even tireder than when u went to bed. And the fibro fog, i get that alot, i find it hard concentrating and making information stick in my mind. Sorry im waffleing on here but yes it can be more to cope with that the RA, i have had it for 4 yrs now and its never actually disapeared as such but it does get more managable when u get the right pain relief and rest etc.

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