One week : Hi I've just been dignoses... - Fibromyalgia Acti...

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One week

taylor34 profile image
17 Replies

Hi I've just been dignoses with FM and CFS a week ago now up until last week I new nothing about fibromalaga for yrs now I've suffered with a bad back which I was told I have 2 bulging discs degenative disc disease and 2 discs moved in my neck I've also been told I've got arthritis in my back I as a child I was always ill with migraines and dizziness which I got told 2 yrs ago is a form of meaniers disease I've also been told 3 wks ago I have loss of hearing and is going to be given a hearing aid for my right ear I also have been told I have tinitus i relise now that all of theses syptoms are caused from FM . I wrk full time and recently been feel so tired and couldn't understand why but now I know why I feel so drained . I qrstion is does this condition get worse as u get older only at the moment I'm just trying to make sense of it all and get it in my head after yrs of back and forth from the hospital appt from a young age of 3 I now at 36 have a dignoses part of Mt feels relived but the other half is gutted and so mad that it's taken so long does anyone else feel my pain and Anger to me im still young but feel I'm in the body of a 80 year old woman . Thank you mandy

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taylor34 profile image
taylor34
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17 Replies

Hi Mandy I think there are plenty of members on this foram who know exactly how you feel lv got Fibrmyalgia and Tinnatas so you not alone Yes you are young so you got to get the right medication to help you Chin up and fight it like we all do

taylor34 profile image
taylor34 in reply to

Thank you for your support x

BlueMermaid3 profile image
BlueMermaid3

Hello Mandy

First of all a very warm welcome to our lovely caring forum 😊

Many of us here have spent years of our lives going backwards and forwards to GP's and not getting the right answers. I've had Fibro, CFS, HMS and depression for over 30 years. I got my initial diagnosis when I was 20 and my formal diagnosis over 30 years later!

Getting the correct type of medication for you may take some time. Fibro affects all of us very differently and what works for one person may not work for another.

Your GP can refer you to various clinics for help. For example there are Pain Clinics, physio, hydrotherapy etc.

Personally I think it would be best for you to concentrate on one area (for example sleep) and tackle one thing at a time. If you try too many things at once you won't know what is working for you.

You don't say whether you are on any medication at the moment.

In my experience I have found that trauma can make Fibro worse. Other than that it doesn't get worse as you get older, although it may feel that way.

It is completely understandable that you feel angry. Acceptance of a new way of life is part and parcel of coping with Fibromyalgia.

I don't want to bombard you with too much, so feel free to ask any questions.

I look forward to seeing you around

Hugs

Lu xx

taylor34 profile image
taylor34 in reply to BlueMermaid3

Thank you so much for your reply I appreciate it . Yes I've been various pain killers for my back over the years . I'm currantly on noramitriplyne which I've been advised is the best for me I am under a pain manegment clinic at the moment I do agree with you I do need to focus on one thing at a time and at the moment my tiredness has been my main issue . I've also had a flare up in the last 2 weeks because of a incident that happened so I do believe 5hat the reason why I have pain in my hands I've also had some hand tremors which I've had before do you exsprience and hand tremors too ? Thank you mandy x

BlueMermaid3 profile image
BlueMermaid3 in reply to taylor34

Hello Mandy

I'm so sorry. I thought I had replied to your message.

Yes, I do get really bad tremors in my hands. I don't get them all the time. They just appear and disappear when they feel like it!

The more anxious I am, the worse they are xx

TheAuthor profile image
TheAuthor

Welcome to the forum and it is wonderful to make your acquaintance. I genuinely hope that you find the forum useful, informative and loads of fun! I am so genuinely and sincerely sorry to read of how you are suffering and struggling and I hope that you can find some resolution and relief to these issues.

I have pasted you a link below to our mother site, FibroAction which hosts loads of useful Fibro information:

fibroaction.org

All my hopes and dreams for you

Ken

taylor34 profile image
taylor34 in reply to TheAuthor

Thank you for your support

Big hugs and I wish you better days ahead .... Xxx

taylor34 profile image
taylor34 in reply to

Thank you there certainly will be better days ahead as all we can do is look foward not back x hugs back

Hartleyhare2 profile image
Hartleyhare2

Hi Mandy, sounds familiar years to diagnose, sent from pilar to post. I even had two operations thrown in with mine Carporal tunnel and moving the Ulna nerve from within the elbow bone to the outside! If you can get on a FIbro CBT course it will help you with a lot of your issues. Did a hospital Rhumetologist diagnose you? Ask them or the pain team about CBT.. It's not fatal just a huge pain in the bum, no cure but the symptoms can be treated, perhaps start making a list of them.

Best of luck Patrick.

taylor34 profile image
taylor34 in reply to Hartleyhare2

Thank you for your reply I can't belive how long these things take I too was told I had carporal tunnel and then was told the pain I'm having was due to 2 slipped discs in my neck pressing on a nerve and things have gone on from then on . Which im greet full for the dignoses but a bit sad to know I've spent years back and fourth to find out I have a condition that will never be cured

Patdoyle profile image
Patdoyle

You sound just like me but I am now 63. I first got ill in my 30s and after seeing various doctors was told I had menieres. Didn't get the CFS and fibro diagnosis till I was 58. It doesn't get worse as you get older you just learn to cope with things. You have to learn to do things when you can and people have to accept you can't always do things even though you look fine. I think that is the hardest part of all. If you look ok then people think you are. Look after yourself and treat yourself when you are on a good day. I find walking is good and coffee and cake works too.

taylor34 profile image
taylor34 in reply to Patdoyle

Hi thank you for your replies I E not Been to good today and 2as sent to my local hospital for a fast heart rate . I totally agree with you people are going to judge what I've got based on how I look unless they have this cronic condition there never understand I'm totally great full that we now have such thing as this Web site so I can talk to people like yourself for support and advice

Hartleyhare2 profile image
Hartleyhare2

Hi Mandy,

I have just been to Docs and had confirmed I have two bulging discs in my neck from an old MRI ! I have been referred to pain clinic to see if they can help or injections. So funny telly my Dr it wasn't Fibro related when he used to say nothing ever was! Round in circles! Just two months to wait unless I go and collapse in A&E ! Lol

taylor34 profile image
taylor34 in reply to Hartleyhare2

I know the feeling I've had a number of MRI'S done the ones I had done on my neck and back confirmed I have 2 bulging discs in my lower back and 2 slipped discs in my neck the pain sometimes in unbearable most days I feel like I could just take my head of my sholders I'd be ok . I've already had one lot of injections in my back but to honest I didn't want to have no more done as I said if this is a long term thing and it can't cured Iay as well accept it and just get on with it although I do get a lot of pain from them . I do wish you well hope it's not too long a wait x

Hartleyhare2 profile image
Hartleyhare2

Thank you. I had two discs operated on my lower back twenty years ago and touch wood have been fine. I was only 21 and landed badly on a parachute jump, I spent nearly a year in physio before agreeing to op. Next day I cried the relief was so immediate but I don't want the knife merchants on my neck! Lol guess wait and see. Sorry for your back problems, it really affects everything you do. X

taylor34 profile image
taylor34

Yes I agree my back causes a lot of my problems I'm sure mine was caused from a fall I had yrs ago since that day my backs never been the same I have been told there's nothing they can do but just give me pain relief as I now have degenative disc disease and atharitis

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