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The UKFibromyalgia Forums • View topic - Hello, new to this, help and advice needed



Hello, new to this, help and advice needed

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Hello, new to this, help and advice needed

Postby Bunnythecat » Mon Jul 01, 2013 2:00 pm

Hello All,

This is my first visit to the forum.

My name is Trudy, 48 years old, 2 grown up kids and one grandchild. I am a manager of a pension admin team.

I am here because I have recently experienced some pretty bad symptoms that are thought to be neurological or autoimmune. I am yet to get a clear diagnosis.

My mother had Fibromyalgia but at the time I really didn't understand anything about the illness, she mentioned sever pain a lot of the time but as she also developed terminal cancer I assumed her problems would have been predominantly due to her cancer. Alas she's not around to ask about this anymore so I'm not sure what her full symptoms were but I know she did say to me at one time that she thought the Fibromyalgia was causing her more distress than the actual cancer.

I am undergoing tests for possible MS at the moment as my symptoms match very closely and I had a brain scan that showed 7 lesions. However the Neuro Consultant I saw for the results of the scam dismissed my symptoms as "depression" and sent me away with a prescription for anti depressants. I didn't even get a chance to tell him my mum had fibromyalgia as he couldn't get me out of there quick enough. My GP, health ins company and Occupational health assessor all felt very strongly that I should have a 2nd opinion so I am waiting for an appointment with a different Neuro Consultant.

This all started after a spinal operation 2 and half years ago where I never fully recovered and continued to get severe pain. A 2nd op was performed a year later which did improve my mobility and flexibility but still the pain persisted. After the 2nd op I lost feeling and stremgth in my left lower leg and foot and saw anither neuro surgeon in april this year as it was assumed I may have further degenerate dics that were pressing on nerves. However, the neuro surgeon showed me the results of the full spine MRI and it proved that my leg problem was nothing to do with my back, much to my surprise. It was he who referred me for a brain scan and then onto the neuro consultant as he was concerned about the results and the other symptoms I am having which are:

Dizzyness/loss of balance
Pins and needles
loss of sensation in fingertips
Pain in neck/shoulders/knee/lower ribss and of course spine
Tinitus
confusion
Sleep disturbance
Blurred vision
Extreme episodes of fatigue

Can anyone tell me if they are experiencing similar symptoms, if you have been diagnosed with FM was it a long and difficult process?

I just feel very in limbo right now, got no proper diagnosis of anything so not having any kind of treatment except for painkillers for my back. I'm now registered disabled due to walking difficulties and i'm not allowed to work full time at the moment and i'm worried I could lose my job.

Any ideas. advice info about FM would be gratefully appreciated, feeling very alone with all of this. :(

Sorry it's such a long post, If you have taken the time to read it i'm very grateful.

Thanks
Trudy :-)
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Re: Hello, new to this, help and advice needed

Postby denys » Mon Jul 01, 2013 3:17 pm

Hi Trudy and :welcome: to the forum :cow-wave: :cow-wave: :cow-wave: :cow-wave: I suffer from all those symptoms apart from tinnitus we couldnt say your symptoms are due to FM as we arent qualified to do so, the diagnosis is generally quite a time coming as it is an exclusion process.

Look around and have a read of the different boards and I'm sure you will find some answers and help, but if you have a particular problem you want some advice on then just ask away and someone is sure to be able to help :-D :-D :-D :-D :-D :-D
Denys

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Re: Hello, new to this, help and advice needed

Postby FluppyPuffy » Mon Jul 01, 2013 3:24 pm

:cow-wave: :cow-wave: :cow-wave: Trudy and :welcome: to our little sanctuary :bear-dancing: :bear-dancing:

Sorry to hear what you've been going thru, being stuck in LimboLand is extremely frustrating, plus it always rains there :( :( :(

The symptoms and problems you have mentioned, along with your mum having FM certainly suggest it could be possible that you have the condition. However, things are never that simple and straight forward are they :facepalm: :facepalm: :facepalm: As well as FM, there are several other conditions that share the same range of symptoms, so it could also be down to one of them, or several :facepalm: :facepalm:

It can take a while to get some answers as to what is causing your problems, esp when you see dinosaurs that are said to be consultants, such as the neuro~bod you had :facepalm: :facepalm: :facepalm: This is because currently there isn't a test or scan that shows up anything for FM, so dx tends to be made by process of exclusion of the other possibilities with necessary tests, scans etc being carried out.

An FM dx only tends to be given once there is no other option left. The closest thing to an indicator that FM is at work is the tender point test. This is where certain areas on the body, 18 in total, are lightly pressed to see how we react. If it is FM then the tender points will feel very painful when touched. Usually a minimum of 11 out of the 18 points are needed to indicate FM, but not all consultants work on this measurement, so, depending on who you see, you could have fewer tender points and still be told you have FM :facepalm: :facepalm: :facepalm: :facepalm: :facepalm: :facepalm:

Whilst you're starting off on the road to getting some answers, stick with us and we'll try and give you the support and help you need. There is lots of info and advice across the boards covering all sorts of subjects, so have a bit of a looky and a read as you find your way around. You may come across some helpful suggestions that could make things a little more manageable for you.

Anything else you want to know about, just ask and we'll see if we can come up with a suitable answer for you :cow-wave: :cow-wave: :cow-wave:


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