My lovely Occupational Health Visitor left, and left me with someone who barely touches you when she shakes hands. I didn't like her very much at the beginning of the meeting and like her less now. My doctor told me this week that I have Fibromyalgia but because she doesn't have it in writing from someone who specialises in FM she doesn't believe me. She wouldn't listen to what was wrong with me, warned me that I may lose my job as they have done everything they can blah blah blah cut my hours, see my doctor and get him to begin the tests from the start...blah blah blah. Great. I have spent months trying to get to work and do my best. My mother and my doctor think I should not be working at all. I have been through the wringer and all of the tests last year and because they were inconclusive as to whats wrong they have to begin again. What hurt me the most was the revelation that a so called friend at work had passed on information about me to my manager and she had a copy on file! It was something I had written when I was feeling misunderstood at work and had become rather depressed. It didn't last and things picked up - until I began having problems with my back.
My FM seems to be moving up and down my right hand side, which includes my back and makes it too weak for simple tasks so I keep straining it and then taking time off to recover. I have taken a lot of time off. I have had to. I am not a malingerer and I do not want to go on benefits or anything like that, but my body is letting me down bit by bit, and for a so called friend to do so too - well it made me cry.
I want to talk to my Union, but what do I say? What do I ask for?
I contacted my Rheumatologist's secretary who said 'oh yes, he did say he wanted to see you and should have sent you an appointment' This was in last October!
What do I do? I have been advised 'don't reduce your hours because when you do leave, the disability pension is less' - but the OH doesn't believe I have FM so I am not disabled, but I cannot walk far, sleep at night, cope with the pain, trust my hands, stand for more than a couple of minutes, remember things, learn new things! If I lose my job, who will employ me? I won't get benefits because if I am not disabled the DLA will take my mobility scooter away! I will be stuck in my home with no way other than being taken of going anywhere.
What do I do now ;( ?
Written by
Sarah-Jane
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Sarah Jane I can give you no advise, but if you have been diagnosed, there will somewhere be some evidence of fibro which you can use. I feel for you and would like to say you are not alone. We all have stories to tell and we will support you the best we can. Soft hugs xxx
I'd recommend the application of the knuckles of your dominant hand to the soft squidgy thing in the middle of her face.... Painful (to you, who cares about her) but SO worth it....
Thank you for everyones support and advice. I had written a list of my symptoms for my doctor to update him and his information on me [we talked it through too] and have now added a letter explaining the situation, giving him permission to pass on the letter or list to the Rhuematologist. My daughter kindly printed it out for me [out of ink!] and it will go into his mail box tomorrow morning. In addition I did contact my last Rhuematologist's secretary, explained that he had said he wanted to see me and that now my job depended on it so could she please talk to him for me...
In addition my lovely mother has told me she will pay for a one off private consultation if it gets me the diagnosis I need [I don't mean she will want her money back]. I don't know whether to tell work what I am attempting but my daughter is asking why I don't ask for another meeting with someone else as this one clearly was not listening to me!? What do you think? I was thinking if I don't like her report I can say so and ask for a second opinion/appointment - therefore delaying things further. I know I will need time for everything to fall into place and I am no longer depressed thanks to all the support I have had. So please, no one worry about me - except I must get to bed before meds wear off and I cannot sleep.
Sarah-jane tears darlin can be as painful as our Fibro,and can feel and understand what your going through,one peice of advice as and when you meet with consultant/specialist of any kind ask them to sen you a copy of the report that they send to GP,that way you always have information SECURE and dosent go astray.ok sending happy thoughts x
get your rheumatologist on board and get something in writing - a copy of what they send to your GP. Get your GP to confirm in writing whatever you need for work. Try not to despair x
Thanks everyone. The Health wally had paperwork in front of her saying everything had been inconclusive. Well? What does that mean? Everyone? To me FM is a probability and they should have at least mentioned the possibility.
The list of ailments I sent to my doctor was in the same font size as here and covered four pages! I wanted to make sure every detail was included, and still feel I have missed some things.
Do you think I should send a copy to this woman? My doctor gets in on Monday and should see my letter etc, so maybe I will wait until I have spoken to him. Work won't know anything about it for at least a week. She has to type it all up and send it to me first.
Soft hugs
i really do feel for you and hope that you get it sorted love to you diddlexx
That is so so true what you said there about worry about the next hour not next week/month/year love to you diddle x
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Occupational health report - follow up from my post angry😠😠😠😠
CBESA IRESA and Occupational Pension 
It's Fibromyalgia Not Mental Health 
Occupational Therapy 
applying for I’ll health retirement 
