i need help

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i need help

Postby maxinevalentina » Sun Jan 12, 2014 2:35 pm

I really don't no what to do I got diagnosed with fibromyalgia few days ago and I feel so overwhelmed . I don't no what to do I dont have a job and I'm not sure what help I can get my doctors have been a lil useless.
It took my docs 3years to diagnose me with fibromyalgia and iv not been given any painkillers nothing I keep going to docs to try get help but all they seem to want to do are blood tests I do have anemia and I'm doing everytg to get better .
But I just feel alone and because iv only just found out iv been reading about fibromyalgia but I haven't got a clue what to do.
Any advice I would really appreciate it
Thank you

Maxine =]
you'll never know how strong you are untill being strong is the only choice you have
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Re: i need help

Postby whoami » Sun Jan 12, 2014 2:51 pm

Maxine, welcome.
You will find here, lots of caring people who will listen, understand and try to help you.

It has taken some people years to be diagnosed with fibro so you are not alone. It is also quite normal to have a barrage of blood work and tests done along with or before a diagnosis. Your Dr is just ruling out other illnesses that present the same symptoms.

It is too bad your Dr is not treating you since he already has diagnosed you. Maybe they are waiting for results from tests. Go back to your GP and ask him how he is going to help you, what meds can he give you to deal with symptoms.

I really don't know what else to say other than to look for another GP.
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Re: i need help

Postby maxinevalentina » Sun Jan 12, 2014 3:38 pm

Thanks iv got an appointment to see my doc
Its just stressful because it's been so long not knowing and now I do no just don't no what to do
you'll never know how strong you are untill being strong is the only choice you have
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Re: i need help

Postby FluppyPuffy » Sun Jan 12, 2014 3:52 pm

You need to take things step~by~step Maxine and focus on the now. Then as things start to settle down and make a bit more sense, you'll find yourself in a better position to start looking a little further ahead. It takes time and usually involves a fair bit of trial and error, to get things sorted and find what helps you, so going bit~by~bit is the best approach we've found.

With you currently claiming JSA, and now having a definite dx, it might be an idea to speak to your adviser about whether you would be eligible to claim Employment & Support Allowance instead. There is lots of info about it on the Benefits, Working & DWP board, so somewhere else for you to have a looky and another read of things :teddy-bear: :teddy-bear: :teddy-bear:
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Re: i need help

Postby Jeany » Sun Jan 12, 2014 4:20 pm

I agree with the previous post about maybe changing your benefit to Employment and Support allowance, which is for people who are not well enough to work at the moment, so give the Jobcentre a ring and tell them you have been diagnosed now and that you are unfit for work.

I was diagnosed about 18 months ago, and I am struggling to manage the CFS/CFS and fibromyagia, because if I have a day when I feel a little better I want to be doing things like catching up with jobs that have piled up, or to go shopping or something, but sometimes I over do things and end up fit for nothing again for a while.
Listen to your body it will let you know when you are doing to much. Try to lead a healthy lifestyle, and just make the best of what you have, because it's not all bad, and I think it helps to appreciate what we do have in life rather than dwell on our ailments and problems.

All the best, and keep us updated
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Re: i need help

Postby maxinevalentina » Sun Jan 12, 2014 4:56 pm

Thank you everyone really appreciate everything Uv said .
I'll be on the phone tomorrow getting help try sort me out
I am a very positive person I look at life in rose tinted glasses really
And I never give up even when everyone else dose .
Thank you =]
you'll never know how strong you are untill being strong is the only choice you have
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Re: i need help

Postby fibro-lu » Sun Jan 12, 2014 5:17 pm

welcome Maxine,

it is over whelming at first, we all have been there
as said, take small steps at the time
one step in the right direction was to join the forum
there's lots of info and lots of people who understand
:flowers:
all the best :cow-wave: Lu
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Re: i need help

Postby bettyboop27 » Sun Jan 12, 2014 6:43 pm

It may also be worth you applying for PIP, but I would suggest you get help completing the form from CAB or benefits and work website. The ESA50 form will also be easier to fill in with help. It may also be worth keeping a pain diary to help with benefit claims. Good luck.

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Re: i need help

Postby Monty99 » Sun Jan 12, 2014 8:29 pm

I expect you are feeling like you have just been given a death sentence. I know when I was first diagnosed my whole world seemed to collapse. You need to have a few sessions with a physciologist this will certainly help. Get you GP to send you to a Pain Management Clinic, they should know what they are doing and will prescribe what best suits you. You must must take lots of rest and try to keep warm. I expect you don't feel like it but try to take a brisk walk every day, this will help you although you will probably not feel it at the time. Rest and don't be afraid to give into the pain. There is nothing wrong with that as long as you try to exercise a little every day. My heart goes out to you but you are not alone and there is medication out there to help you. The physcologist will help.
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Re: i need help

Postby maxinevalentina » Sun Jan 12, 2014 10:08 pm

Ye it dose feel like a death sentence I'm only 21 Iv worked hard I studied 3 years at college and even school was a nightmare always being tired not feeling my self, I'm a vegetarian so I'm quite healthy and I do go for walks most days to try and clear my head.
My mates have been amazing for the past few days but it's great to come on here and everyone is so lovely and helpful it really helps someone like me that's shy and anxious, I'm a bit of a organised freak so being told this and then being left to deal with it alone is freaking me out but I no I'm never alone. Everyone one says to sleep and rest but I'm a very light sleeper and my brain seems to never switch off it is driving me insane iv told my doc I find it very hard to sleep they always tell me how to relax turn everything off listen to music read everything iv done it I just lay in bed for hours awake it dosent matter how tired I am I find it hard to sleep and always have.
Thank you for ur advice :)
you'll never know how strong you are untill being strong is the only choice you have
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Re: i need help

Postby FluppyPuffy » Sun Jan 12, 2014 10:28 pm

One of the meds first used to try and help with FM is Amitriptyline. It is a older~style anti~depressant that has been found to help with sleep and pain issues. There is some info about it in the linky I posted for you. It sounds a bit daunting talking about anti~depressants, but it is used in much lower dosages for sleep and pain that what it was when used for depression. It might be worth asking your GP if it might be suitable for you to try. It doesn't stop the whirling brain unfortunately (the whirling brain is something that affects a lot of us) but it could help you with going to sleep.
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Re: i need help

Postby Jeany » Mon Jan 13, 2014 10:00 am

I have always been a very anxious and nervous person, and I have problems switching off and going to sleep no matter how tired I am. I was diagnosed with CFS and fibromylgia about 18 months ago, and I think that stress was a major contributor.
I have had to give up a good job, and learn not to beat myself up about not being able to do what I used to be able to do, and to just listen to my body.
I feel for you because you are young, and it must be really frustrating not being able to get on with your life, but the more you stress about it the worse it will get, so be very kind to yourself, and one day I am sure you will be well enough to continue with your plans and enjoy life again. Surround yourself by people and things that make you feel good and bring you pleasure, and clear your life of people who make you feel bad or bring stress to your life. Stress is the enemy for people like us.
You take care and keep us posted x
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Re: i need help

Postby Hellyn » Mon Jan 13, 2014 12:06 pm

Hi, yes the diagnosis can be a shock..I knew but the confirmation was like a grieving process that part of me had to be let go and the new way of living to be embraced.
I live near exeter so I have been referred to the Pain Management Clinic and it is open to me anytime I need help and support. I will be starting a group session soon and looking forward to the support of the group.
It might help to find out if there is a clinic like this one near you and get referred. It will help you with all matter of things.
Yes it is hard, but life can be lived with it as long as you face it head on and not let it rule you but work with it.
Mind over matter....and all that and just accepting that that is how it is and being positive and keep striving to be positive and alive.
All I'm saying is don't give into it and become a martyr to it, be kind and aware of it and plan your day and know your limits and not dwell on it...
all the best.xxx
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Re: i need help

Postby maxinevalentina » Mon Jan 13, 2014 8:22 pm

Today has been a Gd day iv got lots of information and not been in pain to much .
But today I cried so much not been able to stop don't no what's wrong with me .
I feel so tired so emotional and iv had a migraine all day .
Iv gone for a walk iv tried to relax iv had lots of water but I just cry.
has anyone had days like these is there anything u can suggest?
you'll never know how strong you are untill being strong is the only choice you have
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Re: i need help

Postby whoami » Mon Jan 13, 2014 8:49 pm

A good cry can be a good thing. You have been stressing about what is wrong with you, not knowing. Now you do it is a relief in one way .

You know there is something wrong. A name for it, actually any name, confirms your symptoms. Now that you have that your mind can react in a way saying...now what, now what do I do? You cry.

You go ahead and cry all day and tomorrow if it helps. When you stop then you can be fresh of mind and get a plan in action. Your next appointment with your Dr ask him how he intends to help you. Ask him how you can help yourself. Most of all, ask yourself how you can help yourself.

I have had days and still do after 25 years when I just break down and cry, cry, cry. I don't know why other than I am just so tired of hurting all the time. The last time it happened I was in an appointment for something that has nothing to do with fibro. I just burst out crying.

It will pass, it will happen again. Just let it happen and then carry on.

Lorraine x
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