A somewhat unsure introduction

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A somewhat unsure introduction

Postby Bhryn » Tue Apr 02, 2013 2:54 pm

Hi, my name is Nicola (or Bhryn as my internet is). I'm 30 years old, living in Sth Yorkshire.

Last year I was given the diagnosis of fibromyalgia after suffering for a long time with a lot of very strange symptoms that made very little sense to me. Lets see, I suffer with;

Pain (widespread but most vehemently in my back and hips)
Restless sleep (I wake up lots at night and I thrash in my sleep, I can't seem to get comfortable and I often wake up with covers and pillows on the floor) as well as restless legs
Dizziness/Feeling faint (Like I've got food hunger, but it's not and it only crops up when I have a flare-up - which ironically I'm having today)
Excessive fatigue and mental idiocy (aka fibrofog). I hate this more than anything, I feel drained, useless and stupid all the time. It's like trying to think through porridge.
Muscle spasms and cramps
IBS
Depression and Anxiety (I'm not sure which came first to be honest, but it feels like a bit of a vicious circle to me)
Headaches
I clench my jaw a lot without realising it, leading to broken/chipped/ground teeth. I currently have a root canal I messed up thanks to clenching my jaw in my sleep that needs to be fixed but... dental phobia... o_o I fail at being awesome!

I was diagnosed in November of last year, to my everlasting surprise. I was in to see a Rhuematology specialist because of the pain I'd get in my hands and my hips and backs. I've had MRIs and scans and all kinds of stuff thrown at me, with no hint of inflammation, stenosis, nothing. However, I must be really unlucky because I have extreme hypermobility syndrome. I just have to press wrong on a joint and it can sub-lux. I've been like it since I was a kid, so I never thought anything about dislocating my joints despite how much agony it causes. So, there I am on her table, in my undies (that totally didn't match!) and a white sheet, and she's pulling my thumbs and arms and knees, bringing in nurses and saying with real happiness (why do docs get so happy over this stuff?) "Look, textbook HMS!"

Textbook my... and then she started to poke me (oo er missus!). She started down at the ankles and knees, which didn't hurt too much but then she pressed into my sides, my hips and lower back and I just jumped and screamed the building down. She then continued up my body and the pain was... unbelievable. By the end of it, I was sobbing and she said, "That's fibromyalgia, classic, with your symptoms."

I don't think the penny dropped right there and then, but I have been to physiotherapy for my joints (which hasn't done a lot of good, I just dislocated my elbow this week past, just by leaning awkwardly on it) and occupational therapy for my Fibromyalgia. It seems to me like they don't really know what the hell they're doing when it comes to it.

Infact, it seems more like a total hit or miss. I've been given grip supports (as I'm an artist by profession and this is honestly my worst nightmare) and then, about three weeks ago, depression caved in through this act of laughing through it. I thought I was coping well, but I guess I never really realised just HOW much this has affected my life. Two years ago, I was doing the insanity workouts, swimming, fishing, travelling the world. Now, I can barely get out of bed without being exhausted, I need crutches because of my knees and I can't follow a simple thought from one end to the other.

So hello! Bit of a huge introduction, haha. Oh well!

Nicola x
Xbox: Bhryn || Steam: Bhryn
Currently Playing:
Farcry 3 (15% complete)
L4D2 (Map mod- Silent Hill, 45% complete)
FFT - War of the Lions (....7% complete - shhhh!)
Dead Island - Riptide (waiting for release)
Bhryn
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Joined: Tue Apr 02, 2013 9:58 am
Location: South Yorkshire

Re: A somewhat unsure introduction

Postby FluppyPuffy » Tue Apr 02, 2013 3:24 pm

:welcome: to our little sanctuary in this LaaLaa Land that is FM Nicola :cow-wave: :cow-wave: :cow-wave: :cow-wave: :cow-wave:

You'll find lots of info and advice on here, as well as support, understanding and a little bit of :crazy: :crazy: :crazy: :crazy: :crazy: now and again to help with getting thru the Fibrodays :bear-dancing: :bear-dancing: :bear-dancing: :bear-dancing:

It is hit and miss where FM is concerned I'm afraid :( :( :( :( :( Trial and error is another description that is often used as well :facepalm: :facepalm: :facepalm: :facepalm: It's because we're all affected so very differently by it, despite sharing so many symptoms between us :pull-hair: :pull-hair: :pull-hair: :pull-hair: :pull-hair:

The penny doesn't drop straight away when you're told you've been made a member of the club, it takes a while to take things in, process them then get used to living with what life has decided to give you :yikes: :yikes: :yikes: :yikes: I'm 13 years into my quest and I'm still learning about it :cup1: :cup1: :cup1: :cup1: There's always a surprise waiting for you, just when you least expect it or want it :waiting: :waiting: :waiting: :waiting: :waiting:

Need to :penguin: :penguin: :penguin: :penguin: :penguin: off for a bit as my eyes are going :shock: :shock: :shock: :shock: already :scream-1: :scream-1: :scream-1: Have a look and a read as you find your way around the place. And anything you want to know about, just ask, it doesn't usually take too long for someone to bobble along with a reply that could either be helpful or drive you round the twist, all depending on which way you want it to go :bear-dancing: :bear-dancing: :bear-dancing: :bear-dancing: :bear-dancing:
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.

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Re: A somewhat unsure introduction

Postby shazq » Tue Apr 02, 2013 6:10 pm

:welcome: to the forum Nicola :cow-wave:
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: A somewhat unsure introduction

Postby LouLou » Wed Apr 03, 2013 9:59 am

Hi Nicola

:welcome:
What doesn't kill you will only make you stronger ;-)
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Re: A somewhat unsure introduction

Postby Bhryn » Wed Apr 03, 2013 12:41 pm

<3 thanks guys, just got back from the doctors (Vampires, I tell you!) and now am totally wiped out, so, nap time!
Xbox: Bhryn || Steam: Bhryn
Currently Playing:
Farcry 3 (15% complete)
L4D2 (Map mod- Silent Hill, 45% complete)
FFT - War of the Lions (....7% complete - shhhh!)
Dead Island - Riptide (waiting for release)
Bhryn
UKFM Newbie
 
Posts: 6
Joined: Tue Apr 02, 2013 9:58 am
Location: South Yorkshire

Re: A somewhat unsure introduction

Postby LouLou » Wed Apr 03, 2013 12:43 pm

Lol I know that feeling - makes you wonder where on earth all the blood keeps coming from lol.
What doesn't kill you will only make you stronger ;-)
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Re: A somewhat unsure introduction

Postby julia1red » Wed Apr 03, 2013 1:00 pm

Hello x im struggling with this too thats why I come on here the drs don't tell you much and I find it all a bit scary and my depression is really bad today x not been out the house for 5 days which is unheard of
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Re: A somewhat unsure introduction

Postby denys » Thu Apr 04, 2013 12:16 am

Hi Nicola and :welcome: to the forum :wave:
Denys

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.
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Re: A somewhat unsure introduction

Postby Bhryn » Sun Apr 07, 2013 3:10 am

<3 thanks again for the lovely welcomes ^_^ you're all so nice! It's even more comforting to have somewhere I can come and talk over how I'm feeling because of this. I feel... like sometimes I'm a bit of a whiner when I'm Ill. I've had people who I thought were friends say some terrible things, including how I'm just putting it on and I unfortunately lost my last relationship, in july, thanks to this. I was in the middle of testing for the hip, back and stomach pains alongside other emerging symptoms when he decided that... well. It was the 'cancer kiss off' as I call it (even though its not cancer). The: "You're too ill for me to be with."

Which was upsetting.

I think I'm rambling - I've been trying to ride out my flare up for a few days and it's grinding me down. My back hurts pretty badly and its hard to think and I'm weepy but... thank you for having these forums, so I could find other people like me. Thank you *cries*
Xbox: Bhryn || Steam: Bhryn
Currently Playing:
Farcry 3 (15% complete)
L4D2 (Map mod- Silent Hill, 45% complete)
FFT - War of the Lions (....7% complete - shhhh!)
Dead Island - Riptide (waiting for release)
Bhryn
UKFM Newbie
 
Posts: 6
Joined: Tue Apr 02, 2013 9:58 am
Location: South Yorkshire

Re: A somewhat unsure introduction

Postby LouLou » Sun Apr 07, 2013 11:20 am

Bhryn

You are not a whiner and don't worry about coming on here to let things out. Sometimes we just need to say things that only someone else with the same condition will understand.

Flares are relly horrible and when they last a while it can get you down. The main thing is to rest as much as you can and let your body recover. If you feel your meds aren't really workin ask your GP to review them.

As for the so called friends, we have all had that experience thinking people were friends but then deserted you when you needed them most. The people who do genuinely care and love you will stick around and support you. Some people may find it hard to deal with you having FM, but they will still show you some sort of support and love.

I hope your pain eases up for you coon
s
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