I AM A NURSE ALTHOUGH I HAVE NOT WORKED SINCE MAY DUE T...

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I AM A NURSE ALTHOUGH I HAVE NOT WORKED SINCE MAY DUE TO SYMPTOMS I TOTALLY UNDERSTAND WHAT YOU ARE ALL GOING THROUGH , I THINK I HAVE HAD EVERY SYMPTOM POSSIBLE . I HAVE HIT ROCK BOTTOM WITH DESPAIR AND FRUSTRATION .DESPERATELY TRYING TO FIND OUT WAS WRONG WITH ME . TO GET A DIAGNOSIS .MY GP FINALLY GAVE ME A DIAGNOSES . AND REASSURED ME I WAS NOT MAD. I NOW BELIEVE IN 'MIND OVER MATTER ' don't give up hope .TRY TO MAKE THE MOST OF ANY 'GOOD ' TIMES , MOMENTS . I AM STILL SEARCHING FOR A 'CURE '. KEEP FIGHTING . BEST WISHES TO YOU ALL .FELLOW SUFFERER.SUE . B.

[i:c144f3359d]This message was automatically imported from the original Patient Experience[/i:c144f3359d]

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  • Posted

    hi i have not long found out that i have fms i am 24 and really strugling with it i have had these symtoms since bein 16 but they are gettin worse i have lost meny jobs over it and ihave been refused dla have u got any advise 4 me also i av been shaking with it and not just 4 an hour but 4 days at a time do u shake with it the docs dont av a clue y
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  • Posted

    Dear Sue B

    i read your post and had to reply. i am also a nurse working for the NHS and was diagnosed with fibromyalgia this year, although i have presented with symptoms for the past three years. my GP kept telling me it was stress and gave me anti-depressants as the ward i was working on was very busy. i was so annoyed by the constant 'palming off' from my doctors that i referred myself to a specialist. i am now on a drug trial to see if it can help with my symptoms. i haven't been able to work for the last 8 months as i have felt so rotten (extreme fatigue, headaches, neck and shoulder pain etc). my work colleagues have been very supportive which is more than i can say for the trust. i have had to endure hundreds of interviews with those higher up to fight for my job. they wanted me to quit and take a 'career break' as they they thought i must be pulling a fast one!!!! im due back in work now next week and im dreading it as i am still suffering silently, but without pay i have no other option. well thats all i wanted to say. best wishes to you. x

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  • Posted

    Hi there madamhelga

    I do feel for you so much as after suffering pain from head to toe since October 2006 I have just got my diagnosis of \"fibromyalgia\" and as it was my job at the building society could only be kept open for me for a year and as I have only been diagnosed by my pain specialist consultant and I was told I have to persevere until I get the correct treatment ........I am on Celoxib-anti-inflammatory, Gabapentine, Amitryptline and tramadol of a night time (I take tramacet of the day due to my little boy, dont like to be spaced out)

    I had had two appointments for pain specialist, the first being a Registrar and he was very obnoxious and so I refused to see him again luckily I did or I would be probably banging my head against the wall as no-one seemed to want to listen!!!!! The tablets are ok but the only time that I have felt normal was when I had a week of Prediselone and I felt wonderful, a Rhuematologist I saw said I could have fibro but I had mechanical back strain and as it was anyone could feel better taking steroids she said, she wasn't interested in me as she didn't have my file with her anyway so it was a waste of time and money attending the appointment........... I have since read that Predniselone does not releave fibromyalgia symptoms........ so I don't know what to think now I am confused????

    I hope you start to feel better soon and I hope your work is more sympathetic than mine.

    Kind regards

    SES

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  • Posted

    Hi madamhelga

    I suffer from ME and frequently log on to the Chronic Fatigue Syndrome forum. I was interested to read your posting as I also suffer from fibromyalgia associated with ME, and like you, have severe pain in my shoulders neck and upper arms. I always describe it as carrying a sack of hot coals on my shoulders. The symptoms of ME and fibromyalgia are so similar. I found that no analgesic whatsoever relieved the pain (I'm an ex-nurse and therefore tried everything), but what has really helped is the antidepressant (used for pain rather than depression) Dosulepin. I started off on 75mg and gradually increased to 150mgs nocte. The pain is still very much there, particularly in the evenings, but at least it is bearable and I am no longer at screaming point.

    Until recently, I worked as a Sheltered Housing Officer but have now just started a six month career break. It's wonderful not having to get up so early in the mornings but not so wonderful when I received my pay cheque this morning with only a few expenses and no salary!!

    I'm so sorry the trust have been so unhelpful and obviously do not understand your condition whatsoever (Have any of them got medical training .... ?) It's all very frustrating.

    Anyway, I wish you all the best.

    Katie smile

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  • Posted

    hi.. i finally got to see my own gp today... he is referring me to rhrmatoligy(apoliges for the spelling ). i am now on a anit depressant, anti inflamatory, tramodol, paracetomol, sleeping tablets nerve tablets indigestion tablets and a stomach tablet and something for my bowels.... oh well c how i go on them all..... i really do understand how u all are feeling..im still awaiting to find about about dla which looking and reading on this website i dont think i have any hope of getting it..but i will keep fighting cause im as disabed as someone that has had there legs chopped off. im sure u all feel the same... i have my sons 21st on friday and im dreading it as i know i will be in pain and very fatigued i do try my best but it is very hard x
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  • Posted

    HI there all

    Refering to Di

    [quote:ce90d2fbd1]im still awaiting to find about about dla which looking and

    reading on this website i don't think i have any hope of getting it.[/quote:ce90d2fbd1]

    I have read one of two things, it is not easy to qualify for DLA if Fibromyalgia is your \"only\" chronic illness, but secondly I have also read that it isn't what you have as a diagnosis it how your illness affects your day to day living!

    The fact is that fibromyalgia is a awful illness and when I have a flair I can hardly get the energy to move even after how much sleep I have had, with pain from head to toe!, how can this be a normal life, it seems that a lot of individuals don't realize the severity of how this illness effects us, I was awarded LRC but I have severe pain walking so I am appealing..... I am not going to give up though as most people do, as I haven't got a \"normal\" life anymore as this Fibromyalgia is more often hard to live with, and as it does in fact disable me from day to day chores, I just wish I live pain free and back to my old self, but as it is with me for the rest of my life we just have to except it and fight for we should get!

    I hope you all are having a better day than me!!!!

    Kind Regards

    SES

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  • Posted

    ses

    what is that ur getting is it a disablity benefit... i think i will lose all hope if im not entitled to anything as i feel as u said.. really disabled.. some days i cant even get out of bed... im in bed most nights by 7 or8 as i cant stand being awake with the pain and fatigue it gives me.... keep smiling and lets fight this together

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  • Posted

    Hi Di

    You have to explain what it is like on a real bad day, I expressed that the severity worsens due to the weather fluctuations for example, as I always seem to get worse when the weather changes, especially when it rains..... boy I am in pain....... get a lot of rain in the north west too.

    I am having a real bad week this week too and I as it was it seemed to effect my breathing (don't know if this related to fms). I have been so tired lately, extremely fatigued, then last night I got a type of tight stabbing pain in my back under my right shoulder blade, it was so painful breathing, I am going to see what the doctor says about this, can't get an appointment 'til Monday!!!! it has subsided a little.

    I do hope you all are having a nicer Easter than me x

    Kind Regards

    SES

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  • Posted

    hi ses and everyone

    I am so so sore today..it was my sons 21st birthday party on fri night 28th and im suffering now... was going to call out of hours doc but dont know what they can do.... i feel so alone at the min and if anyone touches me i feel so sore.. cant type more as my hands and wrists are causing me probs..hope u all are well and not in to much pain x

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  • Posted

    Hi there Di

    I know the feeling as when there is any get together's I really dread them now as I ache for a week, even going shopping is a major chore, as I feel the pain days later...... I have a two year old and he jumps onto my lap and it is so painful too, I almost scream with pain, but my little one doesn't understand!!! My hands going into a stiff achy pain which often is unbearable for me also? I have excepted these difficulties after receiving my diagnosis but it just gets me down when it seems to be continuous!!!!!

    I hope you start to feel better soon Di, my advice is to have a long soak in the bath and try and have some of \"you\" time as sometimes this has worked for me, but unfortunately not all of the time.......... I have pain in my neck and headaches too at the moment and they are really getting me down! but again it goes with this awful condition!!!!

    Take care all and keep smiling, as that is all we can do!!!!

    Kind Regards

    SES

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  • Posted

    [b:e9aba9b8ad]Hi,

    My name is Dee. I am 35 years old with 4 children. I suffer alot of pain in both of my arms, my shoulder and my neck. The doctor thinks i might have Fibromyalgia, a mild one. She is sending me to hospital for an xray. I am still waiting from the hospital for my appoitment. I was on Steriods for the pain. It does helps in someways. But i still get the pain now and then. Some night it is very hard to sleep with the pain, especially when the room is very cold early in the morning. Now, i have stop taking steriods as they seem to make me very moody. Will the pain gets worst later on in life?[/b:e9aba9b8ad]

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  • Posted

    IN RESPONSE TO YOU ASKING DOES THE PAIN GET WORSE?

    I DONT REALLY KNOW IF IT GETS WORSE OR IF YOU JUST LEARN TO COPE WITH THE PAIN BETTER.

    I THINK IT GETS TO THE STAGE WHERE YOU KNOW HOW TO MANAGE YOUR PAIN,,IE; DONT OVERDO THIGS THAT CAUSE YOU PAIN, REST WHEN YOU NEED TO OR RATHER CAN DO. WHETHER THAT BE IN THE DAYTIME OR EVENINGS.

    I FOUND THAT I DIDNT SLEEP WELL AT NIGHT SO FELT I COULD HAVE SLEPT IN THE DAYTIME...THEN THOUGHT IF I SLEEP IN THE DAYTIME I WONT SLEEP AT NIGHT----VICIOUS CIRCLE.

    i WOULD TRY TO TAKE REST PERIODS,,(if the eyes close---great---if not just enjoy the luxury of doing nothing)

    ALSO GETTING THE CORRECT BALANCE OF MEDICATION REALLY HELPS ALTHOUGH THIS CAN TAKE YEARS.....AS I HAVE FOUND OUT.

    DONT EVER FORGET TO GET NEW SYMPTOMS INVESTIGATED AND DONT BE FOBBED OFF IF YOU HAVE BEEN LABLED WITH \"FIBROMYALGIA\" THAT IS ALL TO DO WITH THAT CONDITION....i HAVE BEEN LIVING WITH FIBRO FOR 15 YEARS NOW DIAGNOSED 6 YEARS AGO..

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  • Posted

    Hi Dee /All

    The x-rays do not show Fibromyalgia, X-rays are to rule out other conditions, for example arthritis. The pain can get worse when the weather fluctuates or when you are stressed out for a reason, tension normally makes the pain worse, and the pain can move from one part of your body to another........ a very unpredictable illness. I have been told to pace day to day life in order to cope with this and yet it doesn't seem to happen.....as when I have had a better day you do things more and then you pay for it days later so my advice is not to over do things, like household chores? Easy said than done though and so a vicious circle!!!!! Especially when you have a two year old and two other children, fighting among themselves!!!! That causes stress alone!!!!!

    Anyway I do hope you all are having a better day when you read this? As my children are arguing over the oldest complaining about her untidy sister (15yr and a 10yr old) and so the pain is severe at the moment........ I think to myself I wish that all I could be stressed out about having a messy room....tut......I do wish....but kids are kids?

    Take care all x

    SES

    :oops:

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