Hello everyone! I'm new!

Introduce yourself and find fellow sufferers in your area or who share the same interests.

Moderators: perseus, *Lisa*, FluppyPuffy

Hello everyone! I'm new!

Postby ee849 » Fri Jan 06, 2012 5:34 pm

Hi all, tried posting a couple of hours ago and think i must've pressed something i didn't mean to as it disappeared as i tried to post!
I hope everyone is well. I'm Emma, 29 from Surrey. I have 2 kids, 6 and 9. Made redundant a year ago so took time out to finish my degree while i wasnt feeling great. I figured it was more worthwhile doing than getting another job as i'd be calling in sick to all the time with an unexplained illness!!!

I've had symptoms for a very long time, i remember the significant ones starting 4 years ago but i am pretty sure i had some before that. Anyway, tested for ms, no lesions in brain or lumbar so sent back to gp. I have had so many tingles, pains, aches, odd sensations etc especially over the past 2 years. My gp today said she thinks i may have fm.

I looked up some symptoms for this. I get a lot of tingles and literally anywhere in the body! I have hypoparathyroidism leading to low calcium but since that is stabilised whatever else i feel isnt calcium related. I have had saddle paraesthesia and get like a mobile phone vibration feeling in the thighs. Lumbar Mri ruled out a slipped disc causing it. I also get tingles below left breast with a tightening feeling and also recently had this in lower right abdomen. Had burning sensations with nothing there, feelings of water dripping down my back and sides, skin feels cold but is actually warm to touch.....the list goes on!

Recently a pain in my wrists with occasional slight swelling returned as well as aching arms, but not all of my arms and under my right arm really aches and my left a little. The aching under the arms and arms themselves are what led the dr to say she thinks fm. I guess i main question then is, does anyone else experience these symptoms? I've had loads of blood tests and as mentioned before, the brain and lumbar mris. I was thinking of asking for an mri for my upper back or going private to see if it gives any clues but i am fed up with tests.

I'm tired most of the time and when i wake i always want to sleep longer. During the day it's not an unbearable tiredness though. Since early nov i think, ive had an ache a bit like a fluey muscle ache which includes my face and my lymph nodes ache (had them scanned too-they are enlarged but pathology seemed ok at the time). I have tmj, get pain like my cheeks in a vice and pain across all my teeth...dentist says teeth are healthy and xrays show nothing. I have ibs, a lot of bloating, intolerance to lactose and it appaears lately i may have an intolerance to wheat too.Weirdly, when i get the face ache i seem to salivate loads to the extent my salivery glands ache!

Sorry its such a long post Ive had more blood work done lately and tests for glandular fever and epstein barr as well as autoimmune diseases which they think may have caused my hypoparathyroidism. Theres just been so much going on with me! Don't know if its a fibro thing either but i get recurrent apparent utis and when i get the results from the lab theres no culture growth! I have blood, nitrates and lymphocytes and protein in it often causing uti symptoms so its very confusing . Any help or advice would be great! Feeling quite alone and frustrated right now and still so confused over what i really have?

Thanks everyone xxx
ee849
UKFM Newbie
 
Posts: 7
Joined: Fri Jan 06, 2012 12:55 pm

Re: Hello everyone! I'm new!

Postby FluppyPuffy » Fri Jan 06, 2012 6:41 pm

:welcome: to the forum emme :wave: :wave:

Sadly, what you're going thru to get an answer to the cause of your symptoms is something a lot of us have experienced :( :( There's no need to feel alone or confused now you've found us. We do our best to help and support each other thru these kinds of things when ever it's needed :hugs: :hugs:

You'll appreciate that we can't say whether you have FM or something else, all we can do is comment, based on our own experiences, whether or not anything relates to what we know about FM. A definite dx needs to come from a medical professional, be it your GP or a specialist/consultant. Is your GP referring you onto someone, such as a rheumi, or is she waiting for the results from the latest batch of tests before deciding on the next step?? :dunno: :dunno: :dunno:

A lot of what you have described symptom wise could well be due to FM, and I suffer with some of them at different times :facepalm: :facepalm: Some of the others tho, such as the saddle paraesthesia, I haven't had before, but that doesn't mean that they aren't a part of FM. With a condition as vague and unpredictable as FM, altho we share a range of symptoms, we are all affected very differently, so could be a part of how it affects you.

If you're unsure about your GPs potential dx, you can always asked to be referred to a rheumi or other suitable specialist, and see what their take on your symptoms is.

While you're waiting for results and things to be checked out, stick with us. Have a look around the site as it is full of info and advice that you could fine useful. Plus you can also ask about anything you want to know and we'll see how we can help you with it :mrgreen: :mrgreen:

I'm not sure why you couldn't post earlier, altho we do sometimes have gremlins playing about and eating things before they can be posted. If you have the problem again, or even remotely similar, just send a pm to either me, or one of the other mods, and we'll see if we can find out why it is happening :mrgreen: :mrgreen: :mrgreen:
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.

If your dog doesn't like someone, then you probably shouldn't either
User avatar
FluppyPuffy
SITE ADMIN
 
Posts: 12719
Joined: Mon Jun 08, 2009 11:25 am
Location: Living Life On The Edge.......Of The Norty Step!!!

Re: Hello everyone! I'm new!

Postby shazq » Fri Jan 06, 2012 6:51 pm

:welcome: to the forum

It sounds like you have lots going on.

We have lots of info on the forum , there is lots to take in but don't worry you have come to the right place for help and support.
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.
User avatar
shazq
UKFM Veteran
 
Posts: 11449
Joined: Wed Feb 11, 2009 8:16 pm
Location: wrapped up under my duvet at home.

Re: Hello everyone! I'm new!

Postby ee849 » Fri Jan 06, 2012 7:07 pm

Thanks Fluffy Puppy and Shazq for the welcomes and replies. Yes i 100% appreciate you can't say if i have it, i just can't see all the symptoms i have relating to it and wondered if anyone had had them. I've been told so many times its down to stress and in my head and go away and forget about it and my symptoms will go..even been reduced to tears by 2 gps who really just saw me as some hypocondhriac making things up. When that happened i was at my lowest point....oh and then they said it was cos i was depressed! I challenge anyone to not have bouts of depression when you aren't believed and are in pain and experiencing weird things.
My gp didn't refer me, i'm not sure why and i didn't ask I have to go back soon for the pill so will ask about it then. I am unsure about it, but then again no matter what they tell me i will doubt now as ive had so many almost positive dxs then told opps no we were wrong. I think today i was a bit taken back by her mentioning it to be honest. I wonder if it could be this and partly another condition or something? The most bothersome thing atm is the weird face ache ...its so hard to explain how it feels! When i get it, often my whole upper body aches including neck and head and thats when the glands feel odd and i get the weird salivation thing. Not dribbling yet though lol! Wish there was a magic test to just give a dx
Emma xxx
ee849
UKFM Newbie
 
Posts: 7
Joined: Fri Jan 06, 2012 12:55 pm

Re: Hello everyone! I'm new!

Postby denys » Fri Jan 06, 2012 7:30 pm

Hi Emma and :welcome: to the forum I agree with the advice from Fluppy and echo Shaz there is an awful lot to take in and it is difficult to grasp everything at once hope we can give you support when needed :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.
User avatar
denys
UKFM Veteran
 
Posts: 11901
Joined: Tue Feb 09, 2010 10:05 pm

Re: Hello everyone! I'm new!

Postby ee849 » Fri Jan 06, 2012 9:00 pm

Thanks Denys! It is a lot to take in. The gp i've been seeing is so lovely, so patient when i go in so much. She's fairly new to the surgery and she's fab and she understands my stress with health after being undiagnosed with hypoparathyroidism for so long. I think i would like to see a rheumo just to confirm things. I'm one of those ppl who can't always think straight when surprised i think, so i guess that's why it didn't enter my head to ask for a referral. She just did say it's what she thinks i have so i would like another opinion.
How long did you guys have to wait to get diagnosed if it's not a rude question? x
ee849
UKFM Newbie
 
Posts: 7
Joined: Fri Jan 06, 2012 12:55 pm

Re: Hello everyone! I'm new!

Postby denys » Fri Jan 06, 2012 9:11 pm

It took about 18 months to 2 years and i did end up with a referral to a rhuemy, it can help but some docs are quite confident at making the diagnosis themselves so do not always refer. To put your mind at rest and help you come to terms with the diagnosis maybe a referral would be worth it. So :fingerscrossed: and :goodluck1:
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.
User avatar
denys
UKFM Veteran
 
Posts: 11901
Joined: Tue Feb 09, 2010 10:05 pm

Re: Hello everyone! I'm new!

Postby ee849 » Fri Jan 06, 2012 10:25 pm

Thanks for reply Denys. I think i will take your advice and ask for a referral next time i go in. I really appreciate you taking the time to answer my silly questions xx
ee849
UKFM Newbie
 
Posts: 7
Joined: Fri Jan 06, 2012 12:55 pm

Re: Hello everyone! I'm new!

Postby denys » Fri Jan 06, 2012 10:37 pm

No questions are ever thought of as silly Emma, we have the most bizarre questions running round our heads at times and who better to answer them than other :crazy: :crazy: :crazy: :crazy: :crazy: people :lol: :lol: :lol: :lol: :lol: :lol: :lol: :lol:
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.
User avatar
denys
UKFM Veteran
 
Posts: 11901
Joined: Tue Feb 09, 2010 10:05 pm

Re: Hello everyone! I'm new!

Postby garytees » Tue Jan 24, 2012 12:13 am

:hit1: i know how u feel emma its sadly true yoy hav FM and alot of too :cry: i now how you feel as i had test after test and was tired sore so so so fed up with PAIN PAIN PAIN sounds like a pop group :roll: :sleep: as we suffer with the side affect of are nasty illness we just hav to somehow keep are chin up and take every day as it comes :goodluck2frm: gaz
garytees
UKFM Member
 
Posts: 21
Joined: Wed Jan 11, 2012 11:10 pm


Return to Where to Say Hello

Who is online

Users browsing this forum: No registered users and 1 guest