Have I really got this?????

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Re: Have I really got this?????

Postby Acei » Mon Oct 13, 2014 4:58 pm

It does sound as though they haven't done a good job eliminating all the other obvious stuff. Despite the pain, inflammation markers aren't normally present in Fibro from what I've read.
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Re: Have I really got this?????

Postby caramia » Mon Oct 13, 2014 7:58 pm

Paisleyjane wrote:Hi, i can sympathise with you.
I was given this as possible diagnosis 2 years ago. I was a nurse and found it hard as I had to retire. I have been to pain clinic this week and now all the trigger points are really painful, where before only some were. I could have cried. Silly I know, I guess it is always hard. Don't beat yourself up. Life changing diagnoses are so hard, do you have anyone you can talk to?
If you had trauma related illness or Parkinson's or MS you wouldn't feel like this. I think it's because they are better known and people understand the implications of having them. We need to hope that generally Fibro is soon accepted the same way. Take carex



You are so right here! The rheumatologist told me years ago I was 'too sane for FM!!' Attitudes of many in the medical professional certainly don't help! I too am a nurse, thankfully I am working in the community part time and as yet can usually cope with this ( some days harder than others granted). I know however I could no longer work on a ward setting!
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Re: Have I really got this?????

Postby caramia » Mon Oct 13, 2014 8:04 pm

loobylu wrote:Thank you all for the replies.
I know after this appointment I will be discharged and the thought of living my life without any support is very daunting.
I know some of you have spent many painful year without a diagnosis and I should be extremely grateful my diagnosis was given in 1 year.
However, would the rheumatologist diagnose fibromyalgia just to give me a label (the easy option)?
Are the symptoms of multiple sclerosis similar to this?
And why do my legs constantly feel like I've run a marathon?
loobylu wrote:Thank you all for the replies.
I know after this appointment I will be discharged and the thought of living my life without any support is very daunting.
I know some of you have spent many painful year without a diagnosis and I should be extremely grateful my diagnosis was given in 1 year.
However, would the rheumatologist diagnose fibromyalgia just to give me a label (the easy option)?
Are the symptoms of multiple sclerosis similar to this?
And why do my legs constantly feel like I've run a marathon?
Thank you once again for replying. I don't feel so isolated now xx



Just a thought for your aching heavy legs, this is a symptom that drives me to distraction at times , especially if I'm tired! I take a magnesium tablet at bedtime and find this can help.
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Re: Have I really got this?????

Postby carolad » Mon Oct 13, 2014 10:06 pm

Acei wrote:
I don't think any of us can be 100% sure that we have Fibro given that there is no definitive test. The diagnosis comes from having a set of symptoms and the elimination of all other obvious causes. If a widely accepted test is ever developed, I wonder how many of us will be told that we don't have it? That will be fun and games.



This is one of the things I find so hard to deal with - I like things to be black and white, I don't like dealing with uncertainty! It is a case of rule everything else out and if you don't find any other conditions, then it must be fibromyalgia. Not exactly very scientific ;-)

And the symptoms of fibromyalgia are so general and so diverse, that I really wonder whether we all have this condition.... But until they do find a proper test (if they ever do), I suppose none of us will know for definite.
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Re: Have I really got this?????

Postby Minniemum » Tue Oct 14, 2014 8:02 pm

To be fair it would be hard for anyone with FMS say for sure that you have the condition, even all the varieties of medical professionals can't agree on the definition. It's not easy when you realise that you have a chronic health condition, that in many ways changes your life and it must be common for many to go through stages of denial and grief when first given their diagnosis.

I hope your visit to the rhumatologist is positive and you get some answers, write your questions down, because if 'fibro-fog' hits you, it'll be then, best to go with a close friend who can take notes of the answers.

The only good thing for me was getting a diagnosis at all, I couldn't understand why my brain was jelly, my energy was zero, my ability to and pick up recover from infections took so much longer. I'd got used to living with a degree of pain over the years, later finding out that I had advanced osteoarthritis of the cervical spine, wow!! No one ever thought to check it out before.

When I think about it now, I think fibro hit me during pregancy when I was 29, I then went into some sort of remission for years but stress at work years later brought it back to the fore.

I'm blessed to have a supportive husband and that I'm now retired. I really hope that you find ways to cope, whatever your diagnosis is.
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Re: Have I really got this?????

Postby sylviahughes » Tue Oct 28, 2014 12:04 pm

hello sorry to read about your pain but i know how you are feeling i have had this since my back op and its been down hill since ,I have given up work .i rely on my husband as you cant claim if you partner works ,I do find that really hard they would continue to pay my stamp but to be put through court disability claims and being refused even when i had doctors /consultant letters posted to them .
I gave up as my husband and i couldn't be put through all this time and time again .my doctors and consultants were amazed but that's the Government for you ,I HAVE WORKED ALL MY LIFE and to be treated like that is............
anyway i do hope you are coping like lots of us we are struggling to understand this chronic illness /pain
Doctors just hand out tablets and send you on your way .
I have seen the consultants had blood tests which con firm this pain but still find it hard who is there to help us if they dont know how the hell are we meant to and we are the ones living this pain.
keep strong i to get really bad day's but i then just rest do what i can but then i have no children at home husband works away .
but when your on your own its hard !!!!!
sylvia
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Re: Have I really got this?????

Postby Fairytaz » Tue Nov 04, 2014 12:19 am

Hi there, just a quick reply. When I was diagnosed, I was in denial for sometime, it's kind of a relief but you still end up thinking "nahhh" . I can totally empathise. Although, it does seem you have fibro symptoms. Take care :)
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