Hey :) New here :)

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Hey :) New here :)

Postby IAmParadiseSeekerJW » Tue Dec 09, 2014 11:54 pm

Good Evening everyone :)

Well, I'm Dina, i'm 19, female...

I suffer from Migraines - always had headaches but they developed into migraines as I started heading into my late teens. They have been so bad at times that I have to spend the day in bed and i'm in agony.

I had the worst migraine i've ever had 10 weeks on thursday. Passed out (something I don't do) and landed myself in hospital...They were more concerned about bleeding on the brain etc and at this point, Fibro was something that just wasn't being considered because I wasn't (to my knowledge) displaying any symptoms. I underwent blood tests and had a CT scan and then they wanted me to have a lumbar puncture so had all that done and came out of hospital after they told me everything was fine that they could detect (except for high pressure - something to do with the lumbar puncture?). They gave me a lot of tablets and that took away the migraine but from the sunday afternoon I came out (I had the l.p done saturday around 11pm) until now, i've never felt this bad ever...I initially thought all the aching and all the pain and the sleepiness but not sleeping and the weakness and everything was all connected with having had the l.p and it just being after effects of some sort, but after a week it hadn't gone and I started to get a bit worried...I wasn't sleeping, and when I was it was because i'd cried myself to sleep at 4am and woke up around 2pm the next day not feeling refreshed. I was so achy everywhere, that led to pain, and I had a lot of weakness in my limbs, and stiffness...I went to my religious meetings (almost 2 hours long) and I'd try to lift up my books and I couldn't..I'd hold a magazine (thin) in my hands and i'd start shaking and i'd have to put it down. I couldn't sit there the whole time because i'd be in so much pain and i'd have to go lie down at home for an hour or so. None of these symptoms have changed, just I am completely unable to do what I was doing before. My friends (quite a number have fibro or me, a few with ms too) haven't shown much sympathy I think because the doctor initially told me that I ended up in hospital because of a virus and this is what it probably was HOWEVER my symptoms were in line with Fibro. I was given Naproxin to take twice a day after i'd finished my course of Co-codamol but it didn't help at all..I've got about a week's supply left and it's not helped one bit with the aching. Anyway, went to the doctor a second time and saw a different gp - he told me it sounds like fibro but there was nothing he could do about that and just told me to do a few exercises a day..he was quite dismissive. I'm an emotional person, and a lot has happened in my life that has been hard to deal with, I suffer from depression too, and so I frequently break down because everyone is dismissing this and yet I am 19 and should be enjoying life, being able to do what I want and now all of a sudden, I can't...I physically cannot get up at 8am in the morning to get on with my day...I end up not being able to get up until minimum 10am and thats a struggle but the longer I spend in bed, the harder it is to get up because i'm so stiff. I got referred by the hospital (about my migraines) to the Neurologist, and saw him 25/11 and explained that since the major bad migraine, i've been okay - a few bad headaches here and there but no migraines and then explained that i've had a variety of new symptoms though. I wrote a list for him a few days before because I'm just unable to fully concentrate or think. I'm all of a sudden a scatterbrain and remembering things as they come up..But anyway, after checking things like reflexes etc he tells me he thinks its arthritis - inflammation of the joints - so told me to go and have blood taken again. Off I went, and I felt SO weak that day and told the nurse and she took my blood and I passed out (I knew I would). Got the results back the friday before last, and as expected, nothing they could find was wrong. So I spoke to the third doctor and she just says, "well it sounds like Fibro but we have to wait for the neurologist now"...So I'm not being given any kind of definite only "it sounds like". All I know is that this is what i'm going through and I'm struggling to cope:

-Aching all over
-Weakness in limbs
-Finding it difficult to sleep (usually 2-4am I manage to get off)
-When I have slept, I do not feel refreshed
-Cold/Heat just makes me feel worse
-Pains in legs finding it hard to walk at times
-Finding it hard to get up after sat down because I get really stiff
-Jabbing pains in fingers and toes
-Lack of appetite
-Can't think...Quite literally right now because im sure there is something or something's else that i've forgotten but anyway...

Sorry for my long introduction and rambling and going on...I'm a confused 19 year old!
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Re: Hey :) New here :)

Postby whoami » Wed Dec 10, 2014 8:29 am

Don't ever feel you need to apologise for expressing your feelings. You need to be heard and we are here to listen.

Fibromyalgia is a very unique condition that can be hard to diagnose. Those who have it can present similar symptoms or symptoms that are specifically their own. There are symptoms that Dr's look for in helpingvto diagnose.

You certainly have had a good amount of investigation. That is a good thing. Dr's need to rule out other illnesses see part of the diagnosis. I realize how frustrating this can be but it is necessary ,

I hope a firm diagnosis for fibro or something else is made so you can get the proper treatment.

Expect the worst in life you won't be disapointed and you'll be prepared!
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Re: Hey :) New here :)

Postby *Lisa* » Wed Dec 10, 2014 6:18 pm


My daughter is nearly approaching 19 and she was diagnosed at 16 so i fully understand how difficult things are for you.

Can i suggest for you to make sure the doctors have ruled out a condition called Ankylosing spondylitis. This also causes stiffness, inflammation and many other symptoms and starts at a young age normally in the teens and goes un recognised for many years. Just a thought.

You would normally see a Rhumatologist for a fibro diagnoses but i assume as your suffering for severe migrains that you will see a Nuro, they can also look into fibro but not sure they can look into or have the knowledge or any other arthritis or muscular condition :?: but can refer you to a Rhumi if need be.

I hope all goes well at your appointment and :goodluck2:
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: Hey :) New here :)

Postby denys » Thu Dec 11, 2014 5:26 pm

Hi Dina and :welcome: to the forum :cow-wave: :cow-wave:

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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