getting diagnosed

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getting diagnosed

Postby brenda72 » Wed Jan 28, 2015 12:59 pm

i am looking for advise, i have suffered for pain for around 7 years and getting worse and in more places ..ie hip.spine etc. my doctor told me my rheumatology report 7 years ago!! says i had the start of soft tissue rheumatism. they have now decided to treat me using gabapentin which dont help, i asked if i had fibromyalgia but they said soft tissue rheumatism is the same and treated the same? why will they not advise that i have fibro? i am going back tomorrow to see a locum doctor to see what she says and hoping to get diagnosed with fibro but its trying to get this diagnosis. now most of my kids have grown up financially i could do with getting a job but the way it is just now i know i physically cant do it, any help much appreciated.
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Re: getting diagnosed

Postby FluppyPuffy » Wed Jan 28, 2015 1:28 pm

:welcome: to our little FibroFamily Brenda :cow-wave: :cow-wave: :cow-wave:

With you making 2 identical posts, I've removed one to save on the chaos and confusion that inevitably follows when members reply to both topics. We do ask members to only post one topic on the most suitable board rather than making several across the forum.

How long have you been taking Gabapentin??? Just asking as Gabapentin needs time to build up in your system and take effect. For some this can take a month to 6 weeksish, whereas for others it can be up to 3 months. During this time the dosage tends to be gradually increased as well, so if this hasn't happened, then when you next see your GP it might be something to consider asking about.

Wrt to Soft Tissue Rheumatism and Fibromyalgia, from what I can recall, FM did used to be referred to as Soft Tissue Rheumatism by some. It was also sometimes called Fibrositis, then became known as Fibromyalgia when a little more was understood about the condition. As Soft Tissue Rheumatism is a name that is rarely used these days, querying the description and clarifying whether or not there is a difference between FM and Soft Tissue Rheumatism would be a wise thing to do as you will then know exactly where you are with things.

Have you looked into benefits that you may be eligible to claim??? A session with an adviser could tell you if there is something you may be eligible for. Places like Citizens Advice and other similar support organisations have people who can go thru the financial side of things with you, as well as possibly helping you thru the claiming process too, so maybe something else for you to look into when you have a moment.

There is an awful lot of info across the boards, so have a bit of a looky and a read as you find your way around the place. And anything that you want to know about, just ask and we'll try and help you with it :cow-wave: :cow-wave: :cow-wave:
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Re: getting diagnosed

Postby Zia2014 » Wed Jan 28, 2015 2:27 pm

Hi and welcome to the forum :)

I;m taking Gabapentin and don't find it very helpful either, so I am going to try something else. But as FP says, you do need to give it time to work.

Take a look around the forums and use the search button too, there's loads of help on here. And just jump in and post!
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Re: getting diagnosed

Postby brenda72 » Wed Jan 28, 2015 2:34 pm

Sorry for the double post, thanks people. I was given ganapentin about 6 or so months ago .. so think im looking for another remedy. Why wont the docs just say i have fibro? Afterall the rheumatology report was from about 7 years ago. I will see what doc says tomorrow but annoys me why they wont just say u have fibro!
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Re: getting diagnosed

Postby brenda72 » Wed Jan 28, 2015 2:35 pm

Do you get any kind of help in benefits with fibro or in my case soft tissue rheumatism?
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Re: getting diagnosed

Postby Zia2014 » Wed Jan 28, 2015 2:39 pm

I really don't know why they won't say Fibro, but a quick google looks like Fibro belongs to some conditions caused by soft tissue rheumatism anyway. Let us know what your doctor says tomorrow.

If you do a search on here for PIP and ESA there are lots of posts about them, and in the particular area on this forum there are lots of sticky posts with info on benefits.
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Re: getting diagnosed

Postby brenda72 » Wed Jan 28, 2015 2:44 pm

Thanks zia2014, i never thought there would be any kind of benefit for this, would be great save me worrying about gping to work! Do you get any benefits for it? I gather u need to fight to get this?
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Re: getting diagnosed

Postby FluppyPuffy » Wed Jan 28, 2015 2:45 pm

It is possible to be eligible for benefits, it all comes down to the individual's specific situation as to what they may be, what rates they may be paid at etc which was why I suggested seeking advice from people who are familiar with the system. They will be able to go thru your personal position with you and give you an idea of what you may be able to claim.
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Re: getting diagnosed

Postby Zia2014 » Wed Jan 28, 2015 3:20 pm

I don't get benefits no, which is why I don't know much about it.
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Re: getting diagnosed

Postby brenda72 » Thu Jan 29, 2015 7:11 pm

Well seen the locum today, i asked if i had fibro .. never said yes or no .. looked at my rheumy.results from 2010 (soft tissue rheumatism) still undecided .. told me to up the gabapentin. Ive to get blood taken on tuesday as he wants to test forpolymyositis (muscle inflamation). At least he was sympathetic with my aches and pains and seemed to know what i was going through, to go back to him in 2 weeks
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Re: getting diagnosed

Postby MissGems73 » Sat Jan 31, 2015 9:00 am

Hi
It might be worth asking to be referred back to the rhomatologist they might be able to give you more definite answers. and as Fluffy Puffy suggested C.A.B will be able to help put you in touch with the right people regarding benefits, or if you are in social housing some housing associations have benefits advisors working with them so they can also give you advice. I had an advisor from my housing association come out and do a home visit and filled out my forms with me, or even disability uk may be able to give you advise.

Hope this helps and hope you get the answers you need soon :)
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Re: getting diagnosed

Postby brenda72 » Sat Jan 31, 2015 9:25 am

Thanks, will wait to see blood results to see if there is inflammation as he suggested this to see if i had polymyositis and take it from there x has anyone else got this?
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Re: getting diagnosed

Postby brenda72 » Sun Feb 15, 2015 5:16 pm

Well results came back with no inflammation again? Am i also correct and thinking theres no inflammation with soft tissue rheumatism? As thats what they keep saying i have? Going back to doc on tuesday .. cant take anymore gabapentin it makes me ill and gives me a sore head, what does everyone else take?
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