Hi from me

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Hi from me

Postby MrsSizer » Wed Mar 20, 2013 2:01 pm

Hello, I have posted once before but I didn't properly introduce myself so here I go. I'm 30 and living in Yorkshire, I've had health problems for the last 5 years or so and my docs have gone through a range of potential diagnosis from Lupus, MS, Arthritis etc etc. The only thing they've ever actually diagnosed me with is a B12 deficiency although apparently the test for that is unreliable so I don't think that's 100% certain either! I had mostly been seeing a neurologist who's gone back and forwards about an MS diagnosis as my symptoms match MS but they test results didn't. Anyway he's finally said he's as certain as he can be that it's not MS and signed me off. So I had a review with my GP to see where we go from here and she's now said she's pretty certain that it's fibro. I'm just recovering from a pretty bad flare up and she's put me on amytriptaline on top of the pregabalin that I'm already taking. I've responded well to the amytriptaline so she's even more convinced it's fibro now but she's just going to monitor me over the next few months on it and see what happens.

I'm mostly just looking for information and people that understand all this stuff to talk too. Some mentioned to me some new diagnostic criteria, I had a look through the pinned threads but can't find it, is there any info on it anywhere?

Also my older sister is also apparently on the verge of being diagnosed with fibro too. Is there any sort of hereditory link?

Also my GP mentioned to me that sometimes fibro can burn itself out so it may not last forever, which would be amazing as I've spent the last 5 years thinking I have MS which you probably know will just get worse and worse. Is there any truth in that, how likely is it to just sort itself out?

I knew that fibro can cause problems sleeping, well I have chronic fatigue which they've said is caused by the B12 deficiency so I thought that's not me, the only problem I have sleeping is there aren't enough hours in the day. I could honestly sleep for England, I've slept through fire alarms and all sorts, I think I'd be about happy if I got 12 hours sleep a day! Then I read somewhere about fibro saying the problem can be waking feeling unrested? Is that right, because that's a lot more like me!

Anyway I probably have more questions when I can think of them.

Nice to meet you all :-D
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Re: Hi from me

Postby denys » Wed Mar 20, 2013 3:07 pm

Hi and :welcome: to the forum, the hereditary link is something that gets raised quite a few times and from peoples posts it would seem that there does look as though there is a familial link but it hasnt been proven officially as yet :-D :-D :-D

We have also had other members who have been told FM can burn itself out but to date dont know anyone that it has happened to so I wouldnt hold your breath

There is loads of info and support on here so :fingerscrossed: we can help when needed :-D :-D :-D :-D
Denys

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Re: Hi from me

Postby LouLou » Wed Mar 20, 2013 3:42 pm

Hi there

Welcome. We seem to have had quite a few newbies join us the last few weeks, FM is well and truly out there and being recognised more and more.

Thank you for sharing your story with us MrsSizer. Your GP sounds like a pretty good one (you won't believe some of the horrors some people on here have had to deal with!) We all start our FM journey the same as you, trialing different meds and strengths until you find one, two or a cocktail of a few that works for you. They don't completely take the pain away but they do help you do carry on as best as you can.

This forum is fab because not only is it so informative, but no matter what you ask or say there is always someone else who knows what you are going through or have been through the same thing.

The sleep problem you have is something we all have. I too could sleep for 24 hours a day if I didn't have to work lol but no matter how much sleep I do get I still always wake up feeling like I haven't slept at all. It's not that way every day for me, some days I am tired but can manage but other days it floors me.

My GP did tell me once that with FM it was hard to say whether it would be a lifelong problem or whether it would phase out. He said that he had heard a few stories about patients with it where it had kind of eased itself out of their systems but he said if he worked out how many FM patients he had and how many had actually had FM "go away" it was a very very very small number. Not to dishearten you, it could well be possible but like Denys I'm yet to find an example of a person having their FM go away completely.

Anyway I've chatted on long enough. I hope you are keeping well and hope to chat with you soon on here

xx
What doesn't kill you will only make you stronger ;-)
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Re: Hi from me

Postby shazq » Wed Mar 20, 2013 6:46 pm

:welcome: to the forum MrsSizer :wave:

There does seem to be an hereditary link as the topic has been coming up quite a lot.
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.
Fibromyalgia Awareness Day May 12TH.
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Re: Hi from me

Postby MrsSizer » Thu Mar 21, 2013 9:55 am

Hi everyone, Yes throughout the whole 5 years that I've had problems for I have to say I can't fault any of the GP's or specialists I've seen. There's never been any question that I've been making it up or any of the horror stories you hear of. I am very lucky in some ways.

I'm feeling the lack of energy and sleep particularly badly this week, I'm back at work after 10 days off sick and we all know how hard it can be to get back into the swing of things but despite plenty of early nights I'm still really struggling. I'm wondering if the amytriptaline might be making me so sleepy? Anyone know how long it takes to get used to it?!

I was a bit skeptical when my GP said it might go away so don't worry you haven't burst my bubble. I've spent 5 years thinking I have MS so I've reconciled myself to living with pain and have never expected it to magically go away.
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