Fibro advice: Hi, although I've been a... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Fibro advice

lollyc profile image
12 Replies

Hi, although I've been a member for a while now this is the first time I have posted. I've been diagnosed with fibro for about 3 years. So far I've managed to hold down my full time job although at times it's been a struggle. I was wondering if anyone has spells of giddiness? Although I've suffered with it occasionally it seems to be getting worse, I've also had increased tingling in my feet and hands. I went to my GP who tried to refer me back to a Rheumatologist (as this is where I was diagnosed in the first place) but I have been contacted by the hospital to say they have no appointments and to go back to my GP. My GP suggested I increase my medication but it hasn't helped. I've also been diagnosed with B12 deficiency (I have injections) and a folic deficiency (I take tablets daily)

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lollyc profile image
lollyc
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12 Replies
spider555 profile image
spider555

Do you have low blood pressure?

lollyc profile image
lollyc in reply tospider555

Hiya, Thanks for replying, I was beginning to think I wasn't going to get any response :( I'm not sure if I have low blood pressure although I have had in the past. Thanks for your comment it's given me something to go back to the doctor with. I felt a bit nervous posting as I hate people thinking I'm moaning about how I feel.

Hope all's well in your world x

Hi lollyc I had a flare like this earlier this year, I too had B12 injections and folic acid pills, once they have done their job you should feel a bit better, you will often get fatigue esp. if you still work full time, may I ask how old you are?

lollyc profile image
lollyc in reply to

Hi caz-54 I've just had my 50th birthday. I've been having B12 injections for the past year but have been taking folic acid pills for the last 2 months. I'm a Manager of a Children's charity, I love making a difference to children and their families but sometimes by the end of the day I go home shattered and just crash.

in reply tolollyc

A bit too young to consider early retirement like I had to do! MAYBE reduce your hours a bit and claim ESA support?

lollyc profile image
lollyc in reply to

I like the fact you mentioned I'm a bit too young to retire :) My GP has told me to reduce my hours (I've got fit notes with reduced hours coming out of my ears...) my Directors don't really understand Fibro and as I'm sure lots of us have been told I constantly get comments like "you don't look ill" "you look really well" Maybe I should ditch the makeup and stop dying my hair. :) lol. I don't think I would be entitled to ESA. I did look into getting a blue badge as I struggle with walking when I'm having a flare up but I didn't get anywhere.

in reply tolollyc

Yes stop going to work looking glam. go as you really feel, hiding it under makeup wont convince anyone we are really suffering. about ESA- look into it I got it at age 60 when i retired early, I still get it now at 63 maybe ask our Janet the benefit advisor- I,m sure she would help. I didnt get a blue badge either if you can walk-however slowly and painfully- 80 meteres the answer is NO.

lollyc profile image
lollyc in reply to

Hi Caz-54,

Thanks for the advice as I'm new to this can you tell me how to contact Janet?

Mdaisy profile image
Mdaisy in reply tolollyc

Hi lollyc

Sorry to hear you are finding work difficult to manage,not that it helps but we've all been there unfortunately. I am sure Janet, FMAUK Benefits Adviser will be able to point you in the right direction regarding reasonable adjustments and other benefits you might be able to claim if reducing your hours etc

All the information you need to contact her plus information about the Equality Act and helpful website links can be found in this post below;

healthunlocked.com/fibromya...

Wish you all the best and do let us know how you get on. Thank You Hidden :)

Emma :)

lollyc profile image
lollyc in reply toMdaisy

Thank you once again for your help, I will defiantly let you know how I get on :)

I,ll try to get you intouch with her, Mdaisy might link you across just watch for a message from her.

lollyc profile image
lollyc

Thank you for your help x

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