Hi!
I saw my consultant today, first time for a year, and after months of feeling pretty rubbish I have been told I have Fibromyalgia. I probably shoud be panicing, but to be honest I am relieved.
I now understand why I am so exhausted and in so much pain. I can learn to control this and know I have a bit of a way to go, But..... on the up side, my RA is under control - yipee - and my consultant is happy with me! 
I hope you are doing OK, take care everyone x
Glad you have got a name for this now, and I hope you can control it a bit better.
There are some really good fibromyalgia support groups online too, with lots of helpful hints and tips for living with it. Check out more than one of them, and just see which ones you feel most comfortable with, or are most helpful. Also lots of downloadable info and advice too.
oh I'm so sorry to hear that news! I was diagnosed with fybro years before RA, now my RA is under control and my fybromyalgia, it can be done, it wasn't easy but I have been free from the fybro for 5 years now, I know there is no cure for fybro and maybe I never really had it in the first place, I normally keep my mouth shut when fybro gets mentioned as not to offend anyone who is suffering but I have read your blogs since you joined and feel I had to speak up!
No flippin wonder so many RA sufferers get fybromyalgia, going through so much worry and stress is bound to have a negative effect of your body. I tried an alternative treatment, sort of a cognitive behaviour therapy and within 6 weeks I was free for fybro, it does try to come back from time to time but I deal with it swiftly!!
As horrible as RA is, I feel that at least there in proven medications for it but with fybro your pretty much left to deal with it in my experience.
I have a book which helped me if you want it?? (based on the therapy), I do offer it every so often but no-one has taken me up on the offer yet! it's not heavy reading just explains why we have fybro and how to control it, I know it hasn't worked for everyone who's tried it, you have to be open minded but it changed my life...haha until RA turned up that is, now anti-tnf has changed my life again!!
Great news about your RA though xx
How did ant-tnf change your life, i am so close to trying them. I am so exhausted and it is affecting my vestibular system (off balance)...does anyone else experience this. i have a bad ankle and my wrists and elbows are bad. Hands and feet very deformed, does any of this sound familiar to you !
thanks, Nancy
I have been on Cimzia for a year now, and at first my Consultant thought it wasn't working, but now he realises that the fibro was masking my symptoms - To hear my RA is controlled and at a good place was fantastic news ( my fingers are crooked, and my elbow and wrist ache, but not as much as they did - good luck with your journey
Hi Nancy, Anti-tnf changed my life because it put my RA into medically induced remission, I'm 90% better now!
I was lucky enough to get it under control before any deformities, well one one my fingers are wonky and have a couple of trigger fingers but thats nothing to complain about!
If you are being offered an anti-tnf, I would definetly go for it! do you think there is a chance you'll get it?
yes, it is in my fridge, waiting for me LOL
I am hoping for fatigue relief and no worsening deformities and back to a somewhat normal life. I can do almost everything, just really tired and i do have deformities, and i just can't do everything i want. I've had it for 21 yrs
thank you, Nancy
Can i have the name of the book please too. I know of a 19 year old with Fibro and is really struggling, anything is worth a go to see if it helps.
Many thanks Dana
Hi Dana,
I'll send you a personal message later when I've got some more time and give you some more info for your friend, should manage tonight!
Thank you!
You have commented before on my blogs and I am grateful for you advice - is the book available as a kindle version, only I cant hold a book any more, but would be interested in looking into it!
I think I have probably been suffering from Fibro for a while, but my consultant just wasn't sure - I have to seriously look at my life, and with all the rubbish that work has dished out I have to start there first!!
Glad your doing well - take care, and thank you again xx
Hiya,
I'm going to send you a personal message when I get a chance later (along with Danab) you are right though, dealing with all the crap (sorry for language but it is crap!!) first will really help your Fybro.
I have a kindle, love it! speak later x
At least you know whats going on in your body. I have both and the fibro is still causing me problems. Like you said when you knew what was wrong it was a relief, i agree with that,Once i knew what was wrong with me i too felt relief and then i knew that when it rears its ugly head i know whats wrong with me. I know it sounds daft to feel relief,but i don't suffer as much with it now as i know what it is,and yes i do still feel it a lot. I have felt that if you know whats wrong is half the battle. It makes the pain less severe too.
Anyway i'm pleased for you knowing whats wrong.xxxxx
xx You are gem ! x
just found this link mickeltherapy.com/
there is an e-book but does that mean you'll get it on a kindle? not sure, anyway, I saw a trained mickle therapy consultant which really helped as although book helped, someone to talk me through it and explain helped and encouraged me. It did cost me £60 for 3 sessions but cheap considering how much it helped. I'll still message you later x
What is the name of your fibro book, as I would like to get it.
I am so tired and exhausted all the time. I only have to do something small
And I am exhausted.
Take care gill
I have RA (20. Years) and fibro 2 years
Have a good day x
I've had RA for 21yrs. How are you doing and what do you take ? i have hand and feet deformities and it has limited my motion in wrists and elbows. Balance problems and fatigue the worse for me, does this sound familiar to you ? i see you say tired and exhausted, what do you do to help this? that's the worse for me also !!
thanks, Nancy
Hi, later when I have a chance I'm going to send a personal message to danab who is asking the same, when I googled the book there is a mixed responce good and bad but want to explain how it worked for me, I just copy and pass on to you see what you think. In some ways I felt the fybro was worse than the RA as there was nothing when I was diagnosed to help, I can handle pain better than exhaustion!
Just reading these comments have reminded me how much we all go through before a name is put to it and then we have the comfort of knowing that although nothing can be done to totally eliminate it we are better for the knowledge. After coming on this site I realised that Fibromyalgia and RA are very commonly joined at the hip so to speak, I was given 2 big steroid injections when i was suffering the most and that sorted my arms, shoulders and neck pain out along with CBT from my OT that I am most grateful for and wouldn't have known I was entitled to untill I came on this site. I still suffer fatigue but that is manageable just. and the MTX sorts out the wrists and knees and feet. So get all the help you can, it is real and you are worth it. Hope you experience a few more good days than bad soon.
Love Carol
Advice,please,biologics,no funding despite qualifying
Exhausted!
Feeling exhausted
