new to all this and need help

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new to all this and need help

Postby louloubella » Tue Jan 14, 2014 10:26 pm

Hi!! I am yet to be properly diagnosed as my GP is loathe to commit himself but says all signs lead to Fibromyalgia and just handed me a printout about the condition, also whenever ive googled my symptoms, it is the first thing that comes up everytime....
So i guess im looking for a bit of reassurance.....my first symptom came over a year ago, just had a sore ankle to touch and first thing in the morning would be quite painful to stand on and if id been sat for a long time, then chronic tiredness, i could sleep during the day really easily, but i struggle with my sleeping pattern at night.Sometimes i get dizzy, get weird headaches, get throbbing and pulsating in limbs,get a trickling/feeling of warm blood going on in my head, anxiety but most recently i developed really bad back ache right in the middle of my upper back,if i got a friend to touch my back i would flinch, after a couple of months this back ache went but for the last few weeks my right shoulder blade is warm and achy and my right breast sometimes tingles and is tender and warm,ive done a breast exam and no lumps or bumps,no sign of inflammation or rashes etc......just worried!! can anyone help?
Lou
x
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Re: new to all this and need help

Postby Garyl » Tue Jan 14, 2014 10:36 pm

Lou, i been diagnosed for 5 years+, was a rhuemotologist that did it give me diagnosis, it is not a nice condition to suffer from and the mind fog is also not nice. you just need to follow advice from the doctor, I am currently taking 12 pain killers a day to help but is not helping that much. I would not wish fibro on my worse enemy, Thing is as it is what is classed as a invisible illness makes matters worse.

I would say listen to advice from users of this page and your Doctor, one thing that stood out to me was how apologetic the specialist was when he said is no cure.

I hope they do find something to help and cure this
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Re: new to all this and need help

Postby louloubella » Tue Jan 14, 2014 10:49 pm

Thanks Garyl, unfortunately because i have Diabetes type 2 and suffer high blood pressure, my doctor just seems intent on concentrating on those conditions and not the possibility of my having fibromyalgia even though the other two conditions are well under control. I think because of being a female and getting the tingling and warm feeling in my breast, i automatically assume the worst, but when i try and be realistic, i think that the warm aching i get in my shoulder blade must be connected to the warm ache in my armpit and breast,,,but this is where the anxiety creeps in and totally consumes me. lots of love Lou x
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Re: new to all this and need help

Postby Garyl » Tue Jan 14, 2014 11:20 pm

Lou don't allow it to stress you makes it worse, i get the warm tingly felling in hannds arms and legs, currently sat in a warm room typing badly due to wearing gloves as my gp has suggested to help my hands.

I have severe asthma, osteo arthritis amongst other complaints, and managed to beat cancer so not gonna let this awful complaint beat me.

Keep smiling and do the best you can and insist your Doctor does more to help with the fibro, i am lucky i have a very good doctor who does all she can to help.
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Re: new to all this and need help

Postby FluppyPuffy » Tue Jan 14, 2014 11:28 pm

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

Wrt to the sensations in your breast and armpit, altho you have done a self~exam, I'd be inclined to go and see someone about it, if only for your peace of mind. If you ask at your surgery, there may well be a GP who specialises in womens health. Whilst the self~exam can pick things up, a doc will know what other signs and symptoms could indicate, for example, warmth and tenderness could suggest mastitis as, even tho a woman may not be lactating, small amounts can still be produced, which, because they aren't being expressed, can build up and effectively go off, leading to something like mastitis.

With your GP being reluctant to definitely say that it is FM, you could ask to be referred to a rheumatologist, or other specialist who deals with dx~ing FM and other similar conditions and see what they have to say.

While you're deciding what your next step might be, have a bit of a looky and a read around the boards. There is lots of info and advice covering all sorts of subjects, incl things that others have find helpful.

Anything else that you're wondering and/or worried about, just ask and we'll try to help you with it :cow-wave: :cow-wave: :cow-wave:
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Re: new to all this and need help

Postby louloubella » Mon Jan 27, 2014 8:51 pm

Hi again.....went back to the docs again, have had blood tests and urine and all come back clear including tumour and cancer markers. Had a proper breast exam with nurse and nothing to report, they dont seem worried at all. I know i am terribly impatient and want answers like yesterday....my symptoms have been going on for sometime but just never tried to link them before now.

Ive suffered from a tender ankle for years with no explanation, aching knees and tender elbows and really bad fatigue...a part of me tries to reason that various aches ive suffered have all hung around for a long time and then eventually disappeared before moving somewhere else, so the fact theyre moving around is a good thing.

At the beginning of last year i suffered for months with a heavy feeling in my side,had bloods done and scans on my kidneys and bladder and even a sigmoidoscopy all totally clear, that then went away of of its own accord, then at end of year suffered for a couple of months with severe back ache, that too went away as quick as it came.

i suffer most days with brain fog and fatigue and odd sensations in head, and just a week before xmas, this worrying symptom of shoulder blade,armpit and breast pain. it has now gone from an ache to a burning sensation and occasional twinges and has moved from shoulder blade to actual top of shoulder,my breast is no longer tender but still burning feeling for not all but a lot of the day,getting a lot more twinges in armpit...

so as i say the aches/pains/burning is moving or changing. Part of me feels very sure its Fibro but still panicking. i do suffer major health anxiety and have suffered a hell of alot of personal trauma in the last few years, including infertility,stillbirth,post natal depression,divorce,sexual abuse amongst others and top oit off my mum suffered a stroke last week...so am just about to give in!!

Lou
xxx
Last edited by FluppyPuffy on Mon Jan 27, 2014 9:44 pm, edited 1 time in total.
Reason: Split into smaller paragraphs for easier reading.
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Re: new to all this and need help

Postby FluppyPuffy » Mon Jan 27, 2014 10:10 pm

I'm sorry to hear about your Mum Lou :hugs: :hugs: :hugs: Sending her some fairy_dust fairy_dust via the stars for making the best recovery possible :blowkiss: :blowkiss: :blowkiss:

For you to have gone thru the various traumas you've experienced and come out of the other side, it shows you have a very keen inbuilt/inner strength, altho at times it may not feel like it. It is with help from this part of you that you will manage to keep bobbling along to get those answers.

Impatience is something that quite a lot of us share, along with a range of anxieties :( :( :( With you feeling so strongly that FM is the reason for your symptoms and problems, if you haven't tried it before, could you try and channel some of the energy that will be burning away due to the impatience and anxiety into putting something together in relation to your symptoms and problems and why you feel that FM is behind what you are experiencing??
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Re: new to all this and need help

Postby louloubella » Sat Feb 08, 2014 10:14 pm

Hi Guys,

I have to say im not sure i do have fibromyalgia, im totally clutching at straws!! Ive spoken to a couple of people who do definately have it and they agree my symptoms match, whenever i google my symptoms it is the first thing that comes up. Another part of me thinks its just stress and anxiety. Whilst i was undergoing fertility treatment yrs and yrs go, i developed a really bad back ache and what i can only explain as a sensation in my neck that was like an invisible person strangling me!! Had xrays,scans you name it only to find nothing and for it to disappear as quickly as it came, the same happened after suffering a stillbirth, loads of aches and pains with no explanantion and eventually disappearing. I suppose the only reason im not 100% sure its anxiety this time is that there is nothing apart from the daily stresses that i am suffering from.
It is definately a changing thing, as i say it started in my upper back, then moved to my shoulder,breast and armpit and as we speak is now in my neck and getting burning sensations in side of head.The problem is it is threatening my job. Im at the doctors on a weekly basis pestering them for a diagnosis, have had blood tests and all clear, doc has given me ibuprofen which doesnt help at all, no given me co-codomol and has given me a low dose anti depressant to help with sleep but really dont want to take it as i was on them for a few yrs when i suffered from the post natal depression and as im a single mum of an 8yr old i really dont want to use them to put me in such a deep sleep that i wouldnt be of any use to my daughter if she woke up in the night. Doc has referred me to a physio. But work is the worry, ive been there for 14yrs and its a desk job and im on the phone and pc all day, im currently off sick as my neck is so achy that its hard to concentrate, so far they have been understanding but they are pestering me for a proper diagnosis now.

Sorry for ramble

Lou
xxxx
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Re: new to all this and need help

Postby *Lisa* » Sun Feb 09, 2014 12:51 pm

One of the ways to get a diagnoses of fibro asap is to pay private for a physio Or Oesteopath/chiropractor to assess and examine you.

If they have any findings in regards to fibro then they can write to your GP which will speed the process up and a referal to a Rhumatologist or NHS physio. This is what i done on the advice of my GP! as the waiting list to see a physio back then was over 6 months :shock: and to push passed the que this is what he said.

It did work.

I apriciate that many people cannot afford to pay for an asessment privatly but if you can it maybe worth a try.
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: new to all this and need help

Postby louloubella » Mon Feb 10, 2014 8:53 pm

Hi

Have now booked in at the local Chiropractors for Wednesday so will go from there, i can usually put up with most aches and pains but the neck pain and as of yesterday the strange ache in left side of cheek is getting me down.

Thanks for all suggestions

Lou
x
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Re: new to all this and need help

Postby whoami » Mon Feb 10, 2014 9:43 pm

Lou, I am sorry to hear you are suffering andare totally confused by it all.

The fact that your tests are all coming back negative is a good thing. It also makes your symptoms lead toward fibro. Has your Dr tested your tender points?

What makes fibro so hard to diagnose as well as live with is that the symptoms can change daily as well as in an instant. Your Dr is suggesting fibro but is reluctant to come out and say it is, right? Have you asked to see a rheumatologist or visit a pain clinic?

Lou, It is quite common for people to have depression and anxiety with fibro. Stress can increase symptoms and when the stress goes the symptoms can decrease. I have had fibro for 25 years and been on an antidepressant that long. Your Dr can adjust and find a different type of medication so you will not be drowsy.

Lou, work with your Dr but tell him that your work is looking for a diagnosis. I know of a couple of Dr's that treat their patients for fibro and successfully, but they don't commit to putting fibro as a name. They treat the symptoms they say. It really doesn't matter what it is called. I think this must have something to do with the fact that there are still professionals that deny fibro.

I hope you find some peace soon.
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