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The UKFibromyalgia Forums • View topic - How to be diagnosed..?



How to be diagnosed..?

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How to be diagnosed..?

Postby Sez1 » Wed Jan 29, 2014 5:38 pm

OK, so I am 34 years old and have not been diagnosed as actually having Fibromyalgia but I am sure I have it after searching for reasons why I feel so bad, but how to get a diagnosis?? Any advice would be appreciated!!

So I have had IBS since I was 20 and I have also suffered from anxiety and spells of dizziness and sickness. I am also ALWAYS tired, yet have trouble sleeping, sometimes can not stop needing to wee, and also have suffered from aching throughout my body (this comes and goes - when I have it it usually lasts a few hours or a night and then it goes away again for another few days till it returns) I suffered from this for about 10 years but although I have been to my GP many times about these various things they always say there is nothing wrong with me!

After constant stomach upsets I was diagnosed at 21 with IBS and am prescribed Lopermide to manage this. I also went to the GP suffering from anxiety in my mid twenties - although I am pleased to say I have not needed anything for this for the last 7 years or so (although I do go through phases still of being very anxious). I have been to my GP several times with waking up feeling dizzy and he said that was vertigo and that was that... I went about needing to wee all the time and they tested me for a bladder infection and said I didn't have one and my GP just said this "sometimes happens to women my age" (hello I'm only 34!) and I should "train" my bladder.

From my early twenties onwards I went to the doctor about 6 times complaining of crippling tiredness (which I still have in phases actually) and I was tested for a low thyroid but when the blood tests come back normal they just say there's nothing wrong and leave it at that. This has happened so many times that now when I go through what I call a "tired phase" (which can last a few days or a few weeks) I now don't even bother going to the doctors as they never take it seriously anyway. I sometimes feel like i think straight either! I don't have it all the time (although I am in a tired phase at the moment and have been for a few months which is why I am wondering again what is wrong with me!). I also get what I can only describe as an "ache" in my body. It is usually in my legs, lower back, pelvis area and it feels like.. well it feels like my bones are really aching..? I have also trouble sleeping. Even when I am feeling quite well I usually wake up twice a night. Last night the pain in my achey legs woke up and I couldn't sleep from it.

The thing is I am now sure all my symptoms must be Fibromyalgia as although I'm not what I would call really ill, I haven't felt "well" for years really & I can't understand why not- I do not work excessively hard (I work part time) and there is no reason to be this tired... For the last few years I gave up on trying to get a diagnosis as my GP has always just done a blood test and told me I'm fine but now I'm getting really fed up of it and I'd rather just get it sorted so I can enjoy life fully again!

The problem is none of the doctors I have ever seen have even suggested Fibromyalgia to me - I only know about it because it came up on the internet when I was searching my symptoms and when I read about it, it was like describing how I feel!!

How did you get your GP's to take you seriously and how did you get referred for a diagnosis? No doctor has even mentioned this to me!

I feel I want a diagnosis now so I can get some medication as I am so fed up of feeling so rubbish all the time!
Thanks.
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Re: How to be diagnosed..?

Postby FluppyPuffy » Wed Jan 29, 2014 6:16 pm

:cow-wave: :cow-wave: and :welcome: to the forum.

If you feel that FM is the reason behind your symptoms and problems, what a good number of people do is go and see their GP armed with info and explain why they feel it could be the reason behind what they are experiencing.

If you print up some info from a reliable source such as you could then compile a list of your symptoms/problems. Go thru the info about FM and make some notes about where there are similarities between what you experience and what is on the list of symptoms from the info. You can then use this as part of your explanation as to why you feel FM is behind what you experience. Take this with you when you go and see your GP and see what they think.

Whilst some GPs are open to the idea of FM, there are still quite a few dinosaurs who are resistant to the idea of a condition such as FM being "real". Quite often, you can tell within a few minutes what the doc you are seeing thinks by and keeping an eye on their body language, facial expressions, and how their voice may sound/change. Hopefully it will be a favourable reaction from your GP and be the start of you going in a better direction to get some answers


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Re: How to be diagnosed..?

Postby denys » Wed Jan 29, 2014 9:12 pm

Hi and :welcome: to the forum as Fluppypuffy has given you a comprehensive answer all I will add is a :cow-wave: :cow-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: How to be diagnosed..?

Postby Sez1 » Fri Jan 31, 2014 6:24 pm

Thank you for your suggestions!

Unfortunately my trip did not go very well!

I went to the doctors today and she said that they have already given me a blood test for arthritis and I don't have any of the indicators so that means I don't have anything wrong with me! She actually said she thought I might be depressed (I am not!) and I should take a holiday. I said I wasn't depressed but did admit I feel quite exhausted.

Anyway it wasn't very successful as I was made to feel like a hypochondriac even though I pointed out all my symptoms are linked (to this).

Anyway, I don't feel too bad today so I'm hoping this tired phase will go away soon.. I might try again next time I feel rubbish or if the aches come back (with a different doctor!).

How long did it take for you to get diagnosed?
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Re: How to be diagnosed..?

Postby FluppyPuffy » Fri Jan 31, 2014 9:43 pm

It wasn't straight forward for me. When symptoms first started appearing, they presented themselves as problems relating to possible inner ear issues, so I was referred to ENT. In my referral letter, my GP said that I was exhibiting "Meniere's Disease~like symptoms" which needed investigating to either confirm the dx or determine what was the cause of things.

As soon I went in for my first ENT appt, it was apparent that the comment about Meniere's~like symptoms had been homed~in on and that was what I was going to be treated for. So for the next 4 years I was on meds that did made absolutely no difference to how I was feeling, undergoing tests which didn't show up the kind of results that tended to indicate Meniere's, and having various manipulations made to try and reposition the crystals in my inner ear than can affect balance etc. I also started developing new symptoms that were completely unrelated to Meniere's Disease. I was only after being sent for a repeat of balance tests, and being seen by the same person who carried out the tests the first time that things started to change.

Her original report said that I showed none of the usual responses that tend to be present with Meniere's, and that she thought what I was experiencing could be related to migraines. She also took very comprehensive notes about other symptoms and problems that had developed since my previous tests, and wrote a very long and detailed letter to both the ENT consultant and my GP. When ENT received it, they immediately discharged me back into the care of my GP, saying that there was nothing else they could do for me, leaving me back in LimboLand.

Thanks to the copy sent to my GP tho, it set things moving in another direction. Off I was sent for more tests, scans etc, all of which came back pretty normal. I was then referred to a rheumi who told me I had FM, said I needed to lose weight, gave me a leaflet about the condition and shuffled me out of the room as quickly as possible.

It took 4 years to finally get a name for what was affecting me, and it was only after starting to look into the condition, and what I was experiencing that things started to make a little more sense.


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