Is this Fibro for real!!!

All your fibromyalgia experiences, questions and answers.

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Is this Fibro for real!!!

Postby canarygirl » Sat Apr 06, 2013 10:34 am

What a illness to be diagnosed with.... no proper treatment, Drs who don't believe in it, Friends and family who are helpless and so eventually give up on you, society who have never heard of it and to top it all off you have to be in constant pain, fatigued, fibro fogged and just left with memories of what it felt like to actually have a life .......
think I may be going through the ANGER stage of grief

and if one more person says to be think positive thoughts it's all in your mind I think I may scream ....... :evil:
I've been reading up about CRPS Complex regional pain syndrome, The cause of CRPS is unknown but the condition appears linked to an abnormal neural (involving the nervous system) response to injury.
It appears something (nobody is sure what) causes certain nerves to misfire in some way triggering pain ( sounds familiar ) Fibro is more widespread and sometimes doesn't need a injury.
I've just had a fibro moment and forgotten the whole point of this message :lol: so i'll just post it anyway

Chrissy x
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Re: Is this Fibro for real!!!

Postby Janet Poole » Sat Apr 06, 2013 11:06 am

I know exactly what your saying. . Had a really bad bout of everything and sciatica on top. . Really worried about the fog this time thought I was losing my marbles. . When I read something it just won't go in I look at individual words but can't string them together. . Sick and tired of being sick and tired. . Like you the positive thought advice does my head in I don't wish this on anyone but so wish they could have it for a week and see how it feels. . Xxx :crazy:
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Re: Is this Fibro for real!!!

Postby lolo73 » Sat Apr 06, 2013 11:25 am

I get where your coming from but I have 15 years of symptoms and no diagnosis until recently, for me it is a relief that someone can tell me that it is not all in my head and that I do actually have something wrong with me. Some people are investigated for more degenerative conditions like MS and it is a relief for them too. Things are moving forward with FMS, it is a newish syndrome (1990's) so obviously medics don't know too much about it compared to other conditions but quite a few are taking a strong interest and more is known now than 20 yrs ago. I do agree it is STILL cr@p though. I have found my own ways of doing things and I tend to be able to find balance in my life. At present I am having a horrible time with my meds, I have taken the decision to go back to my old regime, it wasn't as bad as the way I have been feeling recently. I guess what I am trying to say is, don't wait for Dr's to sort you out, obviously we are dependant on them for some things but try and find ways to live easier, things like only doing what is necessary, no point in say pulling cupboards out for the sake of it. I am not sure if I am making sense, I am sorry if it is just another fibro fog ramble x
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Re: Is this Fibro for real!!!

Postby kazza65 » Sat Apr 06, 2013 11:32 am

i've just resently finally got a diagnoses because i thought i was going mad. But i aslo been giving really bad news that i didn't want to here that i've got fibro and osteoarthritis with a bulgding disc in my back..

so in other words Mrs B your knackered but will send you for an mri scan just to check the disc and we will do a blood test to check you haven't got rheumatoid arthritis.

If you got that Mrs B your screw.

This is my opion only.....

Good luck to every one..
Live life to the full as you don't know when it will end xxxxxxxxxxxxxxxxxxxxxxxxxxx
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Re: Is this Fibro for real!!!

Postby Janet Poole » Sat Apr 06, 2013 12:10 pm

I have arthritis also but it's psoriatic which is the same as rheumatoid but with the added bonus of psoriasis. . Carpal tunnel syndrome too. . Along with the chronic IBS depression anxiety and agoraphobia life is sweet. . Only thing that keeps me from that big black hole is knowing that I'm not alone. . Thank goodness for fellow sufferers. . If you know what I mean xxx
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Re: Is this Fibro for real!!!

Postby FluppyPuffy » Sat Apr 06, 2013 12:36 pm

If that big black hole creeps up on you Janet, we keep a rope in the corner that we can drop down for you to grab hold of and start making your way out :grouphug: :grouphug: :grouphug:

It's a challenge to say the least, finding the best way to live with this condition and it's associated hangers~on, but it is possible to wrestle some of yourself back from it and keep hold of it.

I'm ever so foggy today thanks to no :sleep: :sleep: :sleep: :sleep: last night so might be making even less sense than usual :facepalm: :facepalm: :facepalm:

I've been in a similar place to where you are at the moment Chrissy, and things do seem never ending. As you find out more about how you are affected and what your capabilities and limits are, there will be little specks of brightness to be found. There is a life to be lived that includes FM rather than FM becoming life and you will find your way there. As you get closer, these specks will get bigger and appear much more often. Just take things day~by~day and try to focus on "the now" and you will start heading towards a better direction :blowkiss: :blowkiss: :blowkiss: :blowkiss: :blowkiss:
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Re: Is this Fibro for real!!!

Postby Janet Poole » Sat Apr 06, 2013 4:48 pm

Thank you xxx :flowers:
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Re: Is this Fibro for real!!!

Postby drew0121 » Sat Apr 06, 2013 4:50 pm

If it was,nt for you guy,s i think id be going mad :lol:
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Re: Is this Fibro for real!!!

Postby Mrsscowie » Sat Apr 06, 2013 5:39 pm

Hi. I am new to all this and you are all really supportive with each other. I have symptoms and signs of fibro but my gp just smiles at me and said lots of people just want diagnosed with something. My line manager says I am just being dramatic. My question is this.... Can I tell my work I have fibro even though I don't have a formal diagnosis? This might help them to understand when I am sore that I'm not making it up? Can anyone advise? Many thanks, Sandra x
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Re: Is this Fibro for real!!!

Postby canarygirl » Sat Apr 06, 2013 6:59 pm

Thankyou all for you great replies its sooooo nice to not be alone, Fluffypuppy thankyou for you inspiration I shall look out for those specks...
To the lady who's waiting for a diagnosis I would explain to people it may be Fibro but just be careful with employers (you know how scared by illness they get) The spoon theory is worth a look at, I use pound coins usually 5 to explain to family about how limited energy I have and how I have to try to spend it wisely... Still a learning process and I often end up in debt to my body, I do allow myself to earn the pounds spent back when I contribute to my health with things like resting, eating well, laughing.

Don't be fobbed off by your GP, You could print off the Fibro symptoms list and tick the one's you have and insist on some help, they are Doctors who are working for the NHS which should be there for you http://www.nhs.uk/choiceintheNHS/Rights ... rview.aspx

Gentle hugs xx
Chrissy
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Re: Is this Fibro for real!!!

Postby Mrsscowie » Sat Apr 06, 2013 8:03 pm

Thank you for your advice x I will hold off telling work for now. :-)
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Re: Is this Fibro for real!!!

Postby FluppyPuffy » Sat Apr 06, 2013 8:30 pm

Glad there was something helpful in my wafflings for you Chrissy and Janet :blowkiss: :oops: :blowkiss:

:welcome: to our little sanctuary Sandra :cow-wave: :cow-wave: I'm sorry to hear you're having to live with FM~like symptoms, and you're getting much help from your GP, neither situation is a good one to have to deal with, and both together can be just soul destroying, and that's before you get to an unhelpful boss. Hopefully with you joining us, you'll find some suggestions that can help you get things moving in a more suitable direction and get you some answers about what is happening to you.

WRT your work and telling them you have FM without a formal dx, I don't think it would be an advisable thing to do. Whilst you have described yourself as having signs and symptoms of FM, there are a number of other conditions that share the same range of symptoms, and whilst you may think what you are dealing with FM, it could be possible that one of these other problems is the reason for how you feel. These other conditions could range from RA to lupus and even MS, and all of these need investigating as part of the process for finding out what it is that is affecting you. I'm not trying to make you feel :yikes: :yikes: :yikes: :yikes: :yikes: or anything, it's just that usually an employer requires official notification of an employee's illnesses, disabilities etc and a formal dx is also needed for coverage under their Occy Health type policies and also for being covered by The Equalities Act 2010, which replaced the Disability Discrimination Act.

With your GP being so unhelpful, is there another one that you could see at your surgery?? Maybe you could ask if there is one that has an interest in chronic pain or rheumatological conditions. If there is, then try and get an appt with them, go armed with info from reputable sources about FM such as from this linky http://www.nhs.uk/Conditions/Fibromyalg ... ction.aspx as well as details of your symptoms and how they affect/impact on your daily life and see if they are more open to the possibility of FM as a potential reason. If you have no joy with you current surgery, then you may need to consider trying a different one. If this is the case, then contact the ones in your area and ask if they have any FM patients registered, have GPs with an interest similar conditions etc and give them a go. Hopefully with a bit of perseverance you will then get things on the right path to getting some answers.

There's lots of other info and stuff on here, so have a look round and see what there is. You may come across some ideas that help make things a little more manageable whilst you're looking for those answers. There is lots of understanding and support as well, it doesn't matter where you are along the path, we try to offer it to everyone who joins us, so stick with us and hopefully things will start looking a bit more :bear-dancing: :bear-dancing: :bear-dancing: :bear-dancing: :bear-dancing:
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