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The UKFibromyalgia Forums • View topic - Hello all!



Hello all!

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

Moderators: perseus, *Lisa*, FluppyPuffy

Hello all!

Postby magicknuts » Thu Jul 24, 2014 12:43 pm

Hi everybody.

My name is Sara, I am from Liverpool. I have joined this forum as although I am undiagnosed at the moment I have found so many similarities to fibromyalgia in my current health problems, and especially since reading some of your posts. Some things I have read about some symptoms such as smells and tastes, I hadn't even thought of as a symptom, but since reading your posts I have realised they may well be so thank you all! :-)

I don't really no what to say, I work as a lab tech, my job is very active a lot of running around and handling hazardous chemicals, but I have had to take sick leave because I was struggling to just walk between labs let alone do any work!!

I was diagnosed with a vitamin D deficiency when I got that diagnosis I was so relieved, I wasn't just lazy with lack of motivation, the aches and pains may have been from that also, the exhaustion, the vertigo my main symptoms as well as low mood - depression, irritability could be accounted for all good I will be on the mend. Phew!

Unfortunately the treatment helped alleviate the vertigo - I no longer feel like I am on a ship with the world bobbing up and down around me all day every day but I am still getting dizzy spells on and off. The exhaustion is still there but is not quite the same, I am still having sleeping problems but am waking up better (I was struggling to wake up) but I have found my aches and pains are worse, I still can't walk down a corridor - if I need to bend down to get something from a bottom shelf I need someone to help me up or use a something to pull myself up which hurts my arms and/or shoulder. I am 32 but my body feels like it has aged so much more and so quickly - or so it seemed at the time. The aches and pains have been there for a while just intermittent, something you shrug off and the next time you get an ache or pain it is somewhere else - so surely nothing wrong just signs of wear and tear with age - I am no spring chicken anymore!

So I am currently at a stage where I have had blood tests a few issues but nothing to suggest other conditions, no RA factor, no evidence of swelling physically or in my blood tests, I have a quite high ANA but no antigens (I was diagnosed with graves disease - hyperactive thyroid in 2008 i think (I can never remember properly) but that is all fine, after researching many of the conditions - nothing seemed to fit, it doesn't mean I don't have them, but when a friend who is well read on all of this said fibromyalgia fits I started reading and the more I read the more I seem to fit, as I say things like when my partner strokes my skin it is nice for a minute or two and then it feels like my skin is being rubbed away, but no signs of irritation, I hadn't even thought to mention this to the doctor, the smells knocking me sick that would never normally be a bother, if I drink a vodka a single tastes like a double or stronger, the same with cordials, food can taste funny to me when my partner says it is fine and normal all things I hadn't thought about, my skin itching more, this along side my inability to climb the stairs without great effort and pain leaving me breathless - even going downstairs, making a brew can be and effort - lifting an empty kettle feels like a ten ton weight walking leads to limping and pains and aches, sometimes my arms feel so heavy just lifting them on their own can be difficult, writing and typing hurts my fingers, hands and wrists and also sometimes my upper arms and shoulders and back. I can't stay in one position for too long with out tightness or pain, I have had to stop sharing a bed as my partner moving next to me can be agony and me moving next to him for hours on end can keep him awake, I now fall asleep watching something rubbish, it can be until the wee hours though and the difference with now and before I got the vitamin d supplements is now I am waking up early (and not late) still unrested and my muscles are so stiff and tight all over from what little sleep I might have had. I have always suffered with sleeping problems since I was in school, a mild insomnia I guess. but I always seems to still be able to wake with energy and a spring in my step.

Well I have rambled more than I planned, I have my first rheumatologist appointment on the 8th August so I will see what he has to say,

I was wondering if there are certain tests I should perhaps be looking at getting before I see him, I am not sure if there is any more I can get, I have had:
Liver and kidney function tests
Full blood count
Erthrocyte sedimentation rate
vitamin D
bone profile
Rheumatiod factor
Anti-cyclic citrullinated peptide antibody level
Anti-neutriophil cytoplasmic antigens
parathyroid hormone
Thyroid function tests
Haemoglobulin A1c
B12 and folate
ANA, DNA binding autoantibodies and ENA.

is there anything else you can think of that perhaps I could have done in preparation? I hate this waiting business, I am not very patient and I hate not being able to work ( my manages have also noticed I am struggling saying how I usually have such energy and drive - I hate not being able to do my job right, nothing has ever effected me like this where my job has suffered as a consequence and I love my job, which I think is why I have been so down as I have been struggling since the beginning or the year perhaps longer to be able to perform it to my best :( )

if you have any advice would be truly appreciated.

Thank you so much if you have taken the time to read this, I am sorry if it all seems so muddled I find it hard to note it all down and forget things.

Thank you again xxxx Sara
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Re: Hello all!

Postby *Lisa* » Thu Jul 24, 2014 2:12 pm

Hi Sara & :welcome:

I am a very inpatient person also so i know how you feel.

You can pay privatly to see a physiotherapist or Oesteopath or Chiropractor whilst waiting.

They can feel for any stiffness and trigger point areas and test your joints. Tell them you feel you may have fibro as they should be well educated on it.

If they do feel you may have fibro they can write a letter to your GP with there findings. This will also push you up the list to see some one (hopefully)
As a Public Moderator & Admin 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...Lisa
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Re: Hello all!

Postby FluppyPuffy » Thu Jul 24, 2014 2:22 pm

:welcome: to our little sanctuary Sara :cow-wave: :cow-wave: :cow-wave:

Sorry to hear what you've been experiencing and living with symptom~wise. A lot of what you have mentioned are shared by a good number of us on here, so whilst you're still in the waiting room in LimboLand to see the Rheumy, maybe have a bit of a looky around the place. The boards are full of all sorts of info and advice, so there might be some things to try out that could help make you feel a little more comfortable.

With your appt with the Rheumy due soon, this might be of interest to you/give you a bit of an idea of what could happen when it's your appt. Reading thru what you have said, I don't think there are any other tests to ask about before your appt. Depending on the way your history presents, and what is said during the appt itself, if the Rheumy thinks that some additional investigations are necessary, they will make the necessary referrals and arrangements. The only thing I can think of, if you haven't done anything like it already, is to keep a diary of how each day is for you, be it a good one, or one where you wish you hadn't got out of bed. This can help with creating that overall picture which is needed to help get questions answered for you. It's not an absolute necessity to do something like this, but can help serve as a reminder about things that may occur randomly or infrequently.

The Waiting Game is a pants one to have to play, but unfortunately does seem to be a necessary one when wanting to get those answers.


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Re: Hello all!

Postby denys » Thu Jul 24, 2014 9:15 pm

Hi and :welcome: :cow-wave: :cow-wave:
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Re: Hello all!

Postby magicknuts » Fri Jul 25, 2014 8:32 am

Thank you all,

I really appreciate it. I am quite lucky my job contract included a small bupa cover, so have decided to use that for the rheumi instead of waiting months to an appoinment - I don't think the cover will get me too much but better than nothing. My sister who lives in London is getting married the end of August and so even though I may not have answer by then I am hoping to be a bit closer, I am dreading the 3 1/2 hour drive in a full car, plenty of pain killers hopefully that will be enough!

Thank you again for such a warm welcome!
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Re: Hello all!

Postby magicknuts » Fri Aug 15, 2014 2:15 pm

I just saw the rheumatologist, he says he beleives it is fibromyalgia. I need to wait for him to send a letter to my GP before anything else. he says he thinks I should with treatments be looking to feel 50% better in 3 months when I see him again. I hope he is right! just have to wait for the letter to reach my gp now. tum tee tum tee tum. I really need to learn patience!!
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Re: Hello all!

Postby denys » Fri Aug 15, 2014 10:56 pm

You will learn with this condition you really do need to learn patience as anything else just leads to more pain :crazy: :crazy: :crazy:
Denys

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Re: Hello all!

Postby magicknuts » Wed Aug 20, 2014 8:38 am

Yes Denys I am starting to learn that - I have just started on pregabalin so now I need patience to see if it works at the dosage I am on! I am so lucky I have a very understanding boss!! I am doubtful I will be able to return to the position I was in completely - it involved running around like a headless chicken and pouring hazardous chemicals from some very weighty containers (some of the chemicals are so treacle like or worse that you have to be able to hold the position for a while), lots of lifting stretching bending reaching and juggling multiple jobs at once. ~~But I have ideas of changes to my position so the worst of it would keep that to a minimum - I hope! I really do want to get back to work - I love my job and felt so lucky to get it! I am going to try and defer the open uni module I am on also more start in October so I hope to be feeling a little better by then as writing and typing at the moment can be painful making it very difficult, and I learn things better by writing my own notes - it helps it stick in my head - so really am very behind with the uni work! *sigh* but I know my limits and I want to do well - not just scrape by so deferring is my best option!

My doc didn't really talk much about the exercise side of things - so I am going to have to figure it out myself. I am being referred to a pain management plan in a neurology department but that could take a couple of months to get an appointment - more patience required! but its website had some toolbox tips on pain management so I will be looking through that to see if it can benefit me in the mean time.

it is just so frustrating - I want to sort out the living room and move it around but all I can do is plan it and then wait for my OH to finish work so he can do the moving! Quite amusing really my OH was sick the end of last year beginning of this and he was in a hosi bed in the living room for a while - unable to do much at all. so I had to move in (did my back in at the time) without his help and then move furniture around to accommodate the bed - so it is now his turn to do all the hard work!!!
But it is frustrating not being able to just do things. I will get used to it and figure ways around it!

I am so glad I found these forums the information and stories are such a help. Thank you all so much!
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Re: Hello all!

Postby denys » Wed Aug 20, 2014 8:59 am

Glad the forum is helping, I worked in a lab (industrial chemist) and ended up being made redundant, a shed load of manual titration's finished me off :shock: :shock: :shock: :shock: :shock: mixing 2 litre volumetrics by hand didnt help either I do miss everything as I completed my degree whilst working. So I wish you all the luck in the world to finish your studies and to get back to work :-D :-D :-D :-D :-D
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Re: Hello all!

Postby magicknuts » Wed Aug 20, 2014 10:15 pm

ah so you understand! yes decanting from a full 5 L demi john or even up to 5 L volumetrics to make brines is just evil! The best is if you have the fun of shifted 25 L even just trying to lift them onto a trolley to move - so not nice! sorry to here you got let go. I have a friend facing similar to myself, she works in microboiology labs but may have to start a drug that will prevent her from working in micro labs. It is not a nice prospect. I have actually been looking at sights to try and find out how to get into tutoring as an option if I have to drop to part time, one to one tutoring either face to face (but they would have to come to mine - I don't drive) or online. trying to stay positive at the moment and think of it as new oportunities to try different things if it comes to it! and people always used to say I should teach! well who knows what is going to happen today was a good day, so what more can I ask!! :-)
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Re: Hello all!

Postby denys » Thu Aug 21, 2014 8:43 pm

Its always good to have a backup plan :-D :-D :-D I still remember having to change very large gas cannisters in the bottle store, trying to keep them upright whilst spinning them round to the used section :lol: :lol: :lol: can laugh now but then it was no joke :-D :-D
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