Weird Symptom that dont seem to be Fibro?

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Weird Symptom that dont seem to be Fibro?

Postby chattie17 » Tue Nov 20, 2012 11:24 am

Hello all
Im a newbie to the forum and wondered if you could offer me some advice.

First off, i should start by saying that i have not at this point been diagnosed with Fibro but when i read about the various symptoms it resonates with me more than anything else so i think its likely. I am as another member so eloquently put it 'in the NHS machine' and have had such a terrible experience that i have now made a formal complaint about my treatment - im waiting to hear a response from this.

To give you an idea of my symptoms; pain all over, but worst in my leg muscles which feel like the muscle tissue itself has turned to tree bark! it hurts. Tiredness to the pit of my soul at times. I shake if i get upset or stressed. muscle twitches. A constant pain in the muscles below my right eye with an attractive twitching nerve (people do stare), my body feels very tender in places and almost feels bruised, i get a very painful lump at the base of my skull on the right side that comes up and down, foggyness in general - sometimes i cant think of words or peoples names that are very dear to me!, nerve pain in my left foot and left hand, extremely painful sacroiliac joint on the right side, i've had vulvodynia for about 5 years, sometimes the cold air REALLY hurts my skin on my neck - its horrible. Im sure there are lots of other things but i feel foggy and cant remember. oh yeah - tinnitus - had that for ages too!

The symptom i cant seem to place with Fibro (if thats what i have) is this horrible wobbly brain or jelly brain i call it. the only way i can describe it is this....you know you get those dials on dashboards that have fluid in them and the needle sort of wobbles around in the fluid? well, the needle is my brain. It's horrible and if i move around too quickly it makes it worse. along with this i get the feeling that my head is nodding, very small and fast movements that my partner assures me you cant see. It almost feels like all of the muscles in my scalp and neck are having tiny, repeptative seizures. I have googled this symptoms many times as its the one i find most worrying but nothing ever comes up as a fibro symptom. It does as an MS symptom :( although they have told me that i dont have MS from my MRI. although i do have legions on the brain there not in the right place and dont look like MS legions.

My question is does anybody else have this?

Sorry if i seem to be jumping the gun as i dont have a diagnosis but im desperate for some answers. its pretty pants feeling so pants all the time :roll: I have recently been prescribed Lyrica though and so far im getting on ok as its reduced my pain ten fold but it has made my mood drop.

Thanks in anticipation.

Chattie :-D
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Re: Weird Symptom that dont seem to be Fibro?

Postby Flash » Tue Nov 20, 2012 11:46 am

Chattie, I know what you mean but I am in no way advising you it is F/M. I had a lot of head trauma in earlier years and am today seeing a nuerologist about a similar thing. I keep bumping into things and my speach goes funny, it feels like I haven't woken up properly. I feel like the inside of my head is getting the shakes, which affects my eyes too.

I have had F/M for 17 years, it has worsened over the last year or 2 but I also have arthritis, my neck being one of the places and 3 prolapsed discs in the neck so will see what is blamed for what, hopefully, today.

Maybe some others do get the same but I would suggest seeing your G.P if you haven't already, just to be sure.

Take care.
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Re: Weird Symptom that dont seem to be Fibro?

Postby FluppyPuffy » Tue Nov 20, 2012 1:19 pm

:welcome: to the forum Chattie :wave: Sorry to hear how things are for you at the moment :( :(

You'll appreciate that we can't say if you have FM, altho what you have described symptom~wise could indicate it as a possibility. To get to the bottom of your problems you need to start off with what is probably yet another trip to see your GP :facepalm: :facepalm: If you go with some info about FM from a reputable source, such as the NHS Choices site, as well as an explanation as to why you seem to fit in with FM, hopefully it will start things off to get you some answers :fingerscrossed: :fingerscrossed: Keeping a diary of your symptoms/problems can help with showing how things are for you.

WRT to
chattie17 wrote:The symptom i cant seem to place with Fibro (if thats what i have) is this horrible wobbly brain or jelly brain i call it. the only way i can describe it is this....you know you get those dials on dashboards that have fluid in them and the needle sort of wobbles around in the fluid? well, the needle is my brain.

As Flash has already said, seeing your GP about this problem would be the best thing to do. There could be a number of reasons why you're experiencing this sensation and things need looking into to find what is responsible.

While you're trying to find out what is happening in your body, stay with us and we'll try to help you with anything you come across, there is a lot of info and advice and support on here. This is the linky to the site I mentioned http://www.nhs.uk/Conditions/Fibromyalg ... ction.aspx Have a look and a read around, there's a good chance there will be some bits and bobs that you'll find helpful :wave: :wave: :wave:
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Re: Weird Symptom that dont seem to be Fibro?

Postby chattie17 » Tue Nov 20, 2012 9:30 pm

Hello both

I just wanted to say thanks to you for taking the time to reply.

I'll give my GP a go again but dont hold out much hope i have to say! hope springs eternal.

Good luck with your hospital appointment too

x
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Re: Weird Symptom that dont seem to be Fibro?

Postby FluppyPuffy » Tue Nov 20, 2012 9:43 pm

Is there a different GP you could see chattie??


Sent with lots of love from LaaLaaLand xx
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Re: Weird Symptom that dont seem to be Fibro?

Postby denys » Tue Nov 20, 2012 11:31 pm

Hi Chattie and :welcome: to the forum :-D :-D :-D :-D :wave:
Denys

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Re: Weird Symptom that dont seem to be Fibro?

Postby shazq » Thu Nov 22, 2012 3:53 pm

:goodluck1: at the docs, hope you get some answers soon. :hugs:
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Re: Weird Symptom that dont seem to be Fibro?

Postby dragon1004 » Thu Feb 21, 2013 1:32 pm

Hi Chattie,

Hope you got what you needed from your GP? I've just signed up and was browsing some old posts. I'm self-diagnosed at the moment!

The jelly brain thing? Am wondering if that's similar to how I feel. I believe mine is linked to vestibular problems I've had since a bout of labyrinthitis last year. Is it worse when you're laying in bed at night? Mine feels like my brain is constantly gently swaying, like I'm on a boat. I also get a fuzziness in my head when I scroll down a page too fast on the PC, or worse still on my smartphone.

Your other symptoms sound very similar to mine, apart from the vulva thing!! I too have a small lump at the base of my neck on the right side of my spine. Doc says it's just some fibrous tissue. I think it's linked to the RSI and shoulder/neck pain that I'm getting now. Terrible cramps, especially if I sit in the same position too long.

Anyway, hope you're feeling better and have had some joy with your GP! :roll:
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