New and need advice please!

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New and need advice please!

Postby aliesher1979 » Sat Jun 02, 2012 9:40 pm

Hi I have just found this site after speaking to a someone a friend knows who suffers from fibromyalgia. For the last 6 years I have spent time in and out of my GP's, hospitals and spent many hours in bed either too tired to function properly or in pain feeling very unwell. I have as so many blood tests I cant count them, had scans in hospital, lumbar punctures etc all to try and find out what is wrong with me. I have been aware that I was tired all the time and incredibly achy but I never put my other symptoms all together untill I spoke with this lovely lady who suffers, at this point I realised that I get serious pain in areas my arms, hips and neck when thay are touched, I have days where I can not think at all because my brain feels like it is made of cotton wool, and some days the smallest noise drives me mad. I have suffered from headaches and migraines for years and nothing I take helps in any way. 2 Years ago I was rushed in to hospital with a suspected stroke (aged 30) because I had woken up completely numb down my left side from neck to toes and was put through all sorts of tests to rule things out (thankfully it wasnt a stroke) the following day the left of my face also went numb and I was in pain and numb for nearly 4 months. I feel so guilty constantly saying to my 5 year old that mummy doesnt feel well and needs to lie down, its not fair on her at all. Any way after speaking to this lady we both felt that there was a high possibility that I have this condition, I dont know where to start though to get a diagnosis, I have moved and my new GP seems to think I am a hypercondriac (SP LOL) ~I just want to know what is wrong so I can try and do something about it as my life is so horrible both for me and my daughter. I would very much appreciate any advice anyone can give me regarding where to start and what I can do.

Sorry for the long post and thank you for reading it xxx
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Re: New and need advice please!

Postby FluppyPuffy » Sat Jun 02, 2012 10:39 pm

:welcome: to the forum aliesher :wave: :wave: Sorry to hear what you've been going thru over the past few years :grouphug: :grouphug:

If your current GP isn't being too helpful, is there another one at your surgery you could see?? Maybe ask if there is one who has experience of dealing with chronic pain conditions :-? :-?

If you think FM may be the cause of your symptoms, you need to actually say this to your GP. If you have a look at this linky http://www.nhs.uk/Conditions/Fibromyalg ... ction.aspx it tells you more about FM. If you list your symptoms and problems, then explain which ones match up with those listed on the site, and also what you were talking about with the person your friend knows, then ask your GP what they think, hopefully they will acknowledge some sort of possibility that it could be, and from there start the process off to get you a definite dx.

While you're waiting to try your next step, if you stick with us, we'll try to help you with anything you want to know about. There is a lot of info and advice on here, and even tho you don't have a dx yet, there's lots of support and advice as we all understand how you're feeling.

WRT your little girlie, there are sofa/chair based things you could do with her. If she likes book and stories, you could read together, if she likes painting or making things, cover a table and the area around it with newspaper or other things and spend some time doing painty, sticky, glittery things. Maybe some board games or getting some of her smaller toys out and playing with her on the sofa. At her age, she'll have a fairly short attention span, so doing something for say 5~10 mins will probably enough, and make her happy as she'll be doing something with mummy, whilst at the same time not taking too much out of you. It's the quality of what she does that she will remember rather than how long you did something with her.

If it helps, I've been an FMer for just over 12 years now, my son was coming up for 4 when things began to emerge for me. I too worried about how he might be affected, he's sitting his GCSEs at the moment and is predicted really good grades. Even tho he has grown up with me being a different mum to him that I thought and hoped I might be, he's turned out not too bad, and it could be the same for your daughter :blowkiss: :blowkiss: :blowkiss:
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Re: New and need advice please!

Postby shazq » Sun Jun 03, 2012 12:33 pm

:welcome: to the forum aliesher :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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Re: New and need advice please!

Postby animalhouse » Mon Jun 04, 2012 9:28 am

hi,

if you find they don;t listen at the gp or your list seems a bit long - i find mine only wanted to think about one thing at a time so has taken ages to keep going back and mentioning another off thel list.

they are some lovely ideas above for your daughter, my faviourite is telly time in the afternoon so i can have a nap but my son is older so safe for me to do so.

:-) take care. and needs must sometimes.
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Re: New and need advice please!

Postby stephenRT » Fri Jun 22, 2012 11:40 am

Hi from Steve
on reading your notes the question that springs to mind over your numb down my left side from neck to toes is do you have far left side chest pain some times in to the arm ? if so can you get your hands on a blood pressure unit, take a reading both left and right side while in pain and then an hour after pain, for any one else reading while fighting to find out my health problems i found my blood pressure while in pain dropped on the left much lower than the right, seems there are one way flaps in your arteries / vain's to stop blood flowing backwards( called leaflets i think ) and they are of a muscles type and may be linked to fibro, will not show up in ecg and tests for heart problems.

more if needed

Steve
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