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The UKFibromyalgia Forums • View topic - Hello all (undiagnosed)



Hello all (undiagnosed)

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

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Hello all (undiagnosed)

Postby Hjp75 » Wed Apr 27, 2011 6:53 pm

Hiya,
I'm 36 and been having pains for years from head to toe but never really mentioned it to my doctor.
I mention things when they were really bad but felt like I was wasting they're time :(
I have had a bad ankle for years since I was about 15 but was told it was tendernitus (not great at spelling sorry)
Then I was told it could be arthritis but all test showed nothing :(
I still have the pain but I now also have it round my knees and most of my leg, arms and shoulder muscles :(
I awaiting an op called micro ablation to remove the lining of my womb as I have pain there all the time not just with my period.
I cant sit to long or stand to long, I can walk quite far but depends how I much pain I'm in before hand :(

I came across fibromyalgia while trying to fine put what's wrong with me.
I have mentioned it to my doctor and she's happy to do test but wants to wait till after my op which should be very soon.
I have been off work now for 3 months and really want to get back asap.

I need to know why I'm getting these pains.
I keep being told by my sister and my mother it's in my head :(

How can physical pain be in your head!!??!!

I have looked up the symptoms and I have them all pretty much :((

Can anyone give me some advice please??

Thank you Helena x
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Re: Hello all (undiagnosed)

Postby sjc » Wed Apr 27, 2011 7:01 pm

:wave: Hi there, hope you are ok today...

Just read you post and can understand how you feel to be undiagnosed and not know why or possibly know why and not be believed, if that makes sense.......I spent years, like many people with fibro, before I was diagnosed....

Have you ever been referred to a pain clinic or rheumatologist - they are the main people who know about pain related and skeletal/muscular conditions......If you aint seen one, I highly recommend you get referred by a gp to a rheumatologist, especially.....they can rule out any underlyine conditions....like fibro or similiar conditions........

I do not want to comment on your situation as I do not know what your suffer with but Fibromyalgia maybe a possibility, but there are conditions that are very similiar to this condition, so that's why it is best for you to get a diagnosis from a rheumatalogist or a good gp..........

I hope you do get a diagnosis soon, as it would definately help you to understand your problems and for other people to understand you.

Take care and have a good nite.
:grouphug:
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Hello all (undiagnosed)

Postby Hjp75 » Wed Apr 27, 2011 7:15 pm

I only found the name fibromyalgia last week. My doctor says it makes sense that it could be that, I have be to see a muscular and skeletal team but i was there thinking it was bone pain.
I don't like complaining about the aches and pains plus I thought they where either cause I'd maybe done to much walking or didn't sleep to well :(

What is involved in being diagnosed!!??

Thank you for replying xxx
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Re: Hello all (undiagnosed)

Postby budda » Thu Apr 28, 2011 6:40 am

Hi Hjp sorry to hear you are in pain, but i think your GP is right and that you should wait till after your op before you have test done, never mind what your mother or sister said, you are the one who is in pain not them, people who dont have anything wrong with them dont want to hear this, So if it were ME i would not complain to them anymore until you have results to show them, we are all hear to listen when you have a bad day, because we understand what you are going throw, keep in touch and let us know how you are doing :hugs:
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Re: Hello all (undiagnosed)

Postby denys » Thu Apr 28, 2011 9:43 am

Hi Helena and :welcome: to the forum the others have basically said all there is to say, you need to get referred to a rhuemy for the tender point test, but your doc may be happy to carry this out herself, you will need to have a battery of blood tests to rule out other conditions and maybe scans its not something that can be done quickly so be prepared for a long journey :fingerscrossed: :fingerscrossed: you get some answers soon :goodluck1: :goodluck1: :goodluck1:
Denys

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Hello all (undiagnosed)

Postby Hjp75 » Thu Apr 28, 2011 11:57 am

Thank you all.
Got loads to do today with no energy and in pain but we have to carry on init :)
I've been reading what others have gone through and it sounds like I may have had this since I was a kid but mildly if that's possible.
It's gotten worse since have to rear end crashes (first a bus hit me then 9 months later on our way home from holiday a very drunk driver hit the back and drove off but thankfully was stopped by police) before this it was just painful legs and tummy :(


Thanks Helena xxx
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Re: Hello all (undiagnosed)

Postby shazq » Thu Apr 28, 2011 3:32 pm

:welcome: Hope you get some answers soon. :goodluck1:
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Hello all (undiagnosed)

Postby Hjp75 » Thu Apr 28, 2011 3:35 pm

So do it :(

Thank you

Helena xxx
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Re: Hello all (undiagnosed)

Postby Ldyalb » Thu Apr 28, 2011 11:36 pm

Hi Helena

I was the same, looking back I did have 'growing pains' as a kid, I have restless legs which I suffered with badly as a child. I'm hypermobile as well and would get sore with sports etc v quickly. I could never walk for long either, legs always hurt. I was diagnosed with tendonitis when I did my GCSEs, the pain is similar to this so I think that was my first major sign, it happened shortly after I had glandular fever and I just haven't been the same since then. I never had headaches and developed them at 15 after the GF, I also found my joints ached when I bent down, I've had chronic sleep issues since 6 months (I stopped napping at 6 months, I would only sleep a few hours at night. I have only napped since then a handful of times and only when very unwell - my poor mother!).

I had a fall in Jan 2010 and the pains began shortly after, struggled to walk as far, knees hurting on stairs etc. I tried to attribute the pain to dyspraxia which had just been diagnosed, it can affect muscle tone. By June I was getting flares and the rest is history.

Wrt diagnosis I was referred to a Rheumy in July, I pestered my Dr and as I have a family history of a variety of arthritises, rheumatism/fibro etc she decided to play it safe and refer me. I saw the Rheumy in Oct, he did the point test, ran bloods, xrays and ultrasounds and I got the formal diagnosis in Jan. Some GPs are happy to diagnose, others will refer you on to a Rheumy. You will normally have blood tests done to rule out Lupus/RA etc. Some also do Xrays to make sure it's not arthritis pain.

Are you taking prescribed painkillers? if not tell your Dr you want some (I had to fight, the GP who referred me insisted I take ibuprofen and doubted my allergy. I was right, she was wrong, I don't see her anymore. It took several GPs and an emergency appointment before one would take me seriously enough to give me the drugs).

Hope you feel better soon :hugs:
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TMJ, RLS, HMS, Fibro, Dyspraxia - ASD + Dyscalculia overlap, Eczema + Rosacea + suspected Psoriatic Arthritis.

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Hello all (undiagnosed)

Postby Hjp75 » Fri Apr 29, 2011 4:38 am

Hiya lbyalb,
Reading your reply I feel like I'm reading about me apart from the sleeping and GF.
I awaiting an op for endo but when that's done my doctor is going to start looking in to this, when I see her in the week she agrees with me so fingers cross I will finally get answers.
It's so annoying when you know something is not right but you just don't know what it is, thinking back to all the things I complained about when I was a kid but told it was in my head I can now see it must have been this or something.
I not 100% it's fibro but I just need to know.

I looked at you profile and I see we like most of the somethings lol I'm a big HP fan to I even have a tattoo lol had it in memory of my little brother who died aged 11 from leukaemia in may 2002 he also was a big fan, think I will cry all the way through the last film lol


Thanks Helena xxx
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Re: Hello all (undiagnosed)

Postby FluppyPuffy » Fri Apr 29, 2011 12:17 pm

:wave: Helena :welcome: to the forum.

Sorry to hear about the various pains and problems you're experiencing, not being taken seriously by those closest to you can be soul destroying. However, people can change their minds, so try not to lose heart about your family. My mother didn't believe there was anything wrong with me to start with, even after my dx she still kept asking what it is that is wrong with me :facepalm: :facepalm: However, since seeing how quickly I can come down with a flare and just how much it affects me, she has realised how things have changed for me, even to the point of making sure I take my meds at the right time when we visit then 8) 8) 8)

Just as Denys has already said, getting a dx for FM isn't a clear, straightforward thing. There are several other illnesses/conditions that share similar symptoms/problems with FM, which is why the usual start of the process is blood tests and any other tests your GP feels necessary. These check to see if anything is showing up that could be the cause of your symptoms. Depending on the results, you could either be referred to a relevant specialist or your GP may feel they can give you a dx themselves. Usually, it is only when these other possibilities have been ruled out that a dx of FM is made.

IMO, I think waiting until you have had your op would be an idea before new tests/investigations are started. It is possible that once you've had the ablation that things start to settle back down for you.


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Hello all (undiagnosed)

Postby Hjp75 » Fri Apr 29, 2011 4:56 pm

Thank you I hope so :(
Today is an ok day just been sat watching the wedding and doing my cross stitch lol :)

I do have an achy left ankle tho it's cold to touch but not much swelling.

My doctor has sent me for blood tests and X-rays ect.... But it's all clear. I know something is not right I just need to know what it is :(

Thanks Helena xxx
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