been tols it's probably fibromyalgia

purplesparkle

hi everyone, I saw my rhuematologist yesterday and I was told that if my bloods & MRI come back ok this time I have fibromyalgia! To be honest with you, I'm not sure if I feel like 'oh it all in your head syndrome' one consultant kind of acted like that and wanted to discharge me because it's only 'fibromyalgia' but lucky enough the other rhuemy asked for me to be transfered over to him-so I can come back!

So what now-how do others feel being told they have fibro?????

mig

Dont really know about fibro,just wanted to wish you well,some-one will be along soon who knows more about it.Mig

Pegsboard

Hi. Don't no how much use I can be but my mum has had fibro for a few years now. I'm on here cos my 3 year old has JIA.

Mum has had some real bad spels and has had to give up work due to fibro. She gets really frustrated cos she cant do all she wants to do but on the whole she's now coping.

She's been on every sort of pain relief going and nothing seems to work for her, well nothing ever gets rid of the pain altogether. Her main problem is lack of sleep and the 1 med that helps is the 1 that makes her sick!!

Shes been really lucky that all Dr's etc have been accepting of the diagnosis and never made her feel a fraud.

Only you know how much pain your in and how much you can cope with. Stick to your guns with the Dr's there will be something that helps even if only a little.

All the best. X

CJHunter

Hiya, firstly you are not alone hun and second , in the words of my consultant : 'the pain is real, it is not in your head, i know you are living with a lot of pain'

Now that came from the consultant who has pioneered a fibro programme at Guys hospital. I am to go to it and then he will put hings in place closer to home. He looks at you holisticly and is always aware of the amount of pain and how it effects us individually.


I hope this reasures you somewhat, there is a good website fibromyalgia uk , if you click on the link to the left ( a blue box) it gives you a lot of good advice.

All the best, big (((()))) take care, u are amongst people who know what its like to live with pain.xx

SandyH

Hi, my Rheumy has told me I probably have FM, but he needs to rule other stuff out first, he says it is defo real, I go back and see him in a few weeks. I told my GP what the Rheumy said and he seems ok about it and tends to agree. It makes all the difference having decent GP's etc who believe and understand, don't take any notice of those who don't. There are some great forums and groups on facebook (is it ok for me to mention FB?)for Fibro sufferers, they offer loads of support.

All the best x

purplesparkle

Thanks so much everyone-I'm so glad I found you all. Your kind words have really made a difference so thanks becuase to be honest I am struggling a bit with being told this. xxx

Wonkylegs

Hi purplesparkle,

Please don't think you're alone in finding the diagnosis of fibro a tough one to digest. mine was diagnosed as secondary to my RA in October, and although the amitriptyline has hselped a lot with the nerve pain and the lack of sleep, there are still things that bring me up short ..... especially at 4pm daily when I could sleep standing up whilst doing the washing up it comes over me so quickly!!! :roll:

I found the Fibro booklet done by the Arthritis Reaearch uk people is very helpful - and there are several websites that have lots of info.

good luck

Wonky xxxx

Colin1

The all in your head thing seems to come from older Doctors because it was once thought of as a psycho-somatic illness, i have sufferd for years and been so ill with FM. It was only diagnosed 2 years ago. The chast and muscle pain i get with it is terrible some days i just dont know what to do. and the Fibro fog seems to make it worse "Do you get that" its where your confused for no reason or you just cant seem to think straite or take things in.
Hope your feeling better soon and as Wonky says your not alone.
Colin

purplesparkle

Thank you so much guys!

colin1 well if sitting in your car & thinking what on earth do I do first or trying to search for words but just can't think of them is fibro fog then I have it! I honestly started to worry that I had alzheimers.

Wonkeylegs-thank you for your words-I could honestly sleep standing up too but then just don't sleep great at night (well since I came off tramadol).

I haven't been great over the last week- I have had ear problems for a while on & off-itching/sharp pain etc. Well during another course of ear drops I just went deaf in my left ear, Doc gave me antibiotics saying it's an infection-but I finish the tablets tomorrow & still can't hear???? (I have TMJD & I'm sure my ear problems are fromthat but Docs say no). I have to go back to the Doctor today-so I will see what she says-it's driving me mad because it has affected my kind of core balance & I have had the most horrible sickness feeling & haven't been able to do much for the last few days.

Also during this I decided to come off of tramadol (I read some scary stories that scared me ridgid about being addicted-I never use to take a paracetamol before all this began-& now I have had so many tablets/injections I've had enough). I spoke to my doctor about coming off & that I was going to reduce them until I was taken none-she was like yep that's fine.......well let me tell you the first few day & nights-nights particularly were horrible-I'm just glad it's over & to be honest I'm going to try alternative therapies & see if I can handle it on paracetamol???? I know I could have before but since coming off of the tablets my pain has been managable-it's just the sleep I need to get sorted as I'm back to waking up loads in the night-I really do beleive if I can get my sleep sorted then it will help with everything-heres hoping!

Well sorry for ranted I just needed to get that out!

Has anyone else got problems with their ears?
Does anyone else know of any alternative therapies-(I have had acupunture but it didn't work) How about massages etc! I do use my heated TENS machine that sometimes helps!!!

Please if anyone has any thing that helps please help! I'm just so fed up of feeling so rough/tired/in pain & am going to take charge of my life again don't want to just take what ever tablet I get given as a desperate attempt to sort it all-I can't be on tablets forever!!!

Thanks xxx