Newly diagnosed and a bit lost

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Newly diagnosed and a bit lost

Postby vikkig » Fri Apr 19, 2013 8:19 pm

I have suffered 7 years from the first of my symptoms, am now 31, and was finally diagnosed last month by rheumy, he prodded and poked after asking few questions said yes it's fibro now off you go. My gp just smiles and nods at me when I tell her I'm in pain, been prescribed naproxen but that's all. I have a 5yr old and a 2yr old so am kept busy with them but some days can't even do the school run. Over the counter painkillers don't work and I can't take codeine so really struggle when husband is at work. Is there anyone else out there who feels like they've just been dropped in middle of ocean, been told to swim for shore but with no directions on how to get there? Is there any advice you've been given by someone else that has helped you?

Am glad I found this forum though as have read some posts by others talking bout their symptoms so I know I'm not alone in that.

Thanks for taking time to read this.
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Re: Newly diagnosed and a bit lost

Postby Betfred101 » Fri Apr 19, 2013 8:29 pm

Hi vikkig, welcome to the forums :) :welcome:
Yes I totally know what you mean it can seem like a here's your diagnosis now get on with it...
Sadly it can be a great fuss with most doctors getting them to understand pain. I would recommend mentioning one or a few of the usual medicines some people here have found useful and seeing how it goes from there. Generally all doctors will at least eventually try and help you especially when you have children i'm sure it can be difficult. There are of course other alternative forms of treatment you may want to mention or read up about. As i see you are not able to take codiene, assuming none of those class of medicines work there are mild anti depressants which some people fund help with sleep, pain etc. Amitrptyline is a common one prescribed for many FM sufferers. Sadly you wont know what works until you have tried it so it can indeed be a trial and error sort of thing.
Would be interested to know what happens, i/we can help find you information on alternative therapy if you like?

Good Luck and i hope you find something that helps! :goodluck2:
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Re: Newly diagnosed and a bit lost

Postby multy1969 » Fri Apr 19, 2013 9:03 pm

hi hun, if ya cant manage school run,which i cant,have a word with the school,ive got someone picking my son up every morning and taking him to school its a massive help cos i dont pull round till about 1 or 2pm lol
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Re: Newly diagnosed and a bit lost

Postby kazza65 » Fri Apr 19, 2013 9:16 pm

:welcome: to the world of fibro !!!

I've just recently been diagnosed and i felt i had been told that i had fibro and was let to get on with it.i felt like i was going :crazy:

I can not fault my g.p he had been really good and under standing and also my pain management doctor has been really good and got me on medication that has really really help.

I take Pregablin, MST continus and amitriptyline at night also i've have oramorph for when i have really bad pain which is when i don't listern to my body...

:goodluck2: in getting help

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Re: Newly diagnosed and a bit lost

Postby lolo73 » Fri Apr 19, 2013 9:19 pm

I think you should ask to be put on to some pain relief and if it is too much for your GP to work out a good regime ask to be referred to the pain clinic. I was luckily on a lot of meds already for my pain prior to diagnosis so I didn't have too much to sort out, although with 13 tablets a day I feel like I rattle x
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Re: Newly diagnosed and a bit lost

Postby vikkig » Fri Apr 19, 2013 10:18 pm

Thanks for taking time to respond.
I have tried a couple of alternative options already before the diagnosis. One I did find great is an acupressure mat. I get really bad pains in hips and lower back. The mat is difficult to get on and off as it causes pain, but a different type, but after bout 20mins of lying really still the deep pain in joints is so much better and I can walk!

It's the pain in my feet, hands, backs of knees....everywhere else actually!

I would love to get back to exercising, before I first got symptoms I went to gym about 4 times a week, had a job where I was on my feet about 10hrs a day and was always out, can't believe how much has been taken away from me because of this stupid condition!

Got more tests for another condition, besides the fms, so think I'll see what happens there and then go back to gp with a bit more info.

Thanks again, it feels so good to know I'm not alone in this
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Re: Newly diagnosed and a bit lost

Postby FluppyPuffy » Sat Apr 20, 2013 2:21 pm

:cow-wave: :cow-wave: and :welcome: to our little escape from it all :bear-dancing: :bear-dancing: :bear-dancing: I've moved you over into here with this being your intro thread as it's a more suitable part of the forum.

How you're feeling at the moment is fairly typical of what comes next when you've been told you have FM, there is so much to take in and get used to, your mind just whirls round faster and faster until the odd thing starts to make a bit of sense, then slowly things will start to come together and you'll be able to start making your way thru things on the quest to find the things that help you manage your condition.

There are numerous meds, treatments, therapies etc that can be tried in various combinations to try and find what helps you. Unfortunately there isn't a mix of things that helps us all as FM affects us all so very differently. It's a case of trial and error as we each need to try different things at different levels and see how they go. So a little patience is often needed as part of the process as well.

This linky might be helpful to you ... tment.aspx It has info about the sorts of meds used in treating and managing FM. Have a look at it and see what there is then go back to see your GP. I know you've said your GP just smiles and nods, which isn't really helpful at the best of times, let alone when you're hurty and are desperate for something to help make it feel a little easier :facepalm: :facepalm: :facepalm: :facepalm: So maybe you could try a different approach with her to see if it gets you a little further forwards. Taking info about meds, treatments etc with you from reliable sources such as the linky above, explaining that you have been looking into some possible options and you're wanting know which of them might be suitable for you to try can start things going off in a better, more suitable direction, so it might be something to consider. Or seeing a different GP at your surgery could be something else to think about, esp if you ask if there is one who has experience of dealing with conditions similar to FM.

While you're waiting for your tests, results etc for your other condition, have a look round the boards. They are packed with lots of info and advice so there might be some helpful suggestions in amongst it for you. And anything else you want to know about, all you need to do is ask about it. There's usually someone not too far away with a reply that could help you :cow-wave: :cow-wave: :cow-wave:
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Re: Newly diagnosed and a bit lost

Postby shazq » Mon Apr 22, 2013 5:42 pm

:welcome: to the forum vikkig :cow-wave:
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