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The UKFibromyalgia Forums • View topic - Limbo Land again



Limbo Land again

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Limbo Land again

Postby emily73 » Mon Apr 11, 2011 7:43 pm

Hi all i have just joined this site and am now at the end of my tether, I have been to have a brain Mri Cervical Mri and spinal mri along with god nows how many more tests. The Nuro said its not MS but may be either ME or Fibromelgia and asked my GP to refer me to an ME spealist in Oxford or London.

My GP said i have depression and did not send me futher just put me on anti depressants great, my symptoms are Fatigue, chronic pain in lower bad and hips needing a stick or wheelchair when out, numbeness in hands and face, loss of appitite, cognitive issues,balance issues, dizzeness,falling, e.tc.

I have not worked for a year due to the pain and i am on 8 x tramadol, 8 x paracetamol, 50mg Amitriptaline, 20mg citalopram and Vesicare 5mg. The pain killers are not working so have been referred to a pain clinic. I went to the GP today after having 3 falls in 5 days again differant GP its hard to get the same one all the time. I explained the situation he checked me over and sugested i have a xray but then started to ask me if i had ever made myself sick, i said no and why would he think that he said because i am skinny what a load of c**p i am 5ft 9 and weigh 10 stone.

I feel like no one is listening even though it says referral to fibro they will still not say i have it even though they are all leaning towards it.

I am going abroad in May so need medical insurance all they say is to put that i have a bad back on the insuance i wish it was just a bad back, do i just put fibro to cover myself.

Sorry for the long message
Em :)
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Re: Limbo Land again

Postby loubie » Mon Apr 11, 2011 10:58 pm

hi :wave:
its such a long hard road we have to go through :evil:
but every thing else has to be ruled out first
when i was going on holiday i told the insurance that i had suspected fibro,
and if you have a bad back you must state that to
it will then cover you :D

hope you have a lovely holiday :wave:
loubie xx

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Re: Limbo Land again

Postby budda » Tue Apr 12, 2011 12:07 am

Hi em :wave: I tell the insurance that i have FM and other problem, its better to be safe than sorry, hope you enjoy your holiday and are pain free. :hugs:
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Re: Limbo Land again

Postby Adele » Tue Apr 12, 2011 1:09 am

the pain clinic should be able to offer you much better help than your gp. a pain specialist can diagnose you and help you manage your pain and a pain psychologist can tell if your pain is down to depression or not. i am being refered to a falls clinic as i obviously fall over, you could ask the pain clinic to refer you.

it helps enormously if you see the same gp so that you can build up a relationship with them. book appointments well in advance so that you don't miss them. book weekly appointments if you have a lot to discuss. try and be positive that the neurologist has given you good news and that you are going to the pain clinic. this is where you'd be going anyway if you had a diagnosis of fms. lastly you probably are depressed. i think most people with chronic illnesses have some level of depression.

there are ways to help yourself. you can phone up social services adult help desk for an OT and social worker assessments to get aids and adaptations in your home. i have an emergency pendant i organised myself. it is run by my local council and costs £1.45 a week. if i press it i know help is on the way. i also organised a keysafe, this cost me £67.99 through social services, so that emergency services and friends can access keys to let themselves in if they have the combination.

you will get there, for some it is a long process, just don't give up fighting. :hugs: adele
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Re: Limbo Land again

Postby budda » Tue Apr 12, 2011 4:21 pm

Great advice Adele. :hugs:
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Re: Limbo Land again

Postby sjc » Tue Apr 12, 2011 7:28 pm

Hi there. You have certainly been through alot with your conditions by the sound of things. I like many others on here can certainly understand your problems with the pain and fatigue, etc......

I agree with Adele with try getting a referral to an OT - they certainly do help with equiptment, if that is what your need. Direct payments is a new scheme that may help people with fibro and similiar conditions.

Definately try pain management, as nowadays, they do help with alot of things.

Take care.....xxxxxx <3 :)
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Re: Limbo Land again

Postby denys » Tue Apr 12, 2011 8:58 pm

Hi Emily and :welcome: to the forum :wave:
Denys

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Re: Limbo Land again

Postby shazq » Wed Apr 13, 2011 9:06 am

:welcome: to the forum :wave:
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Re: Limbo Land again

Postby emily73 » Fri Apr 15, 2011 2:56 pm

Hi all

Thank-you for all you replies its a great help to speak to people that are in the same boat, Adele thank you for your advice i have had the OT in last year they put stairl rails both sides and a bit upstairs, also shower and kitchen chairs have been put in place. I will get onto the social services to try and get some help in doors as i am starting to need more help and its not far on my husband and kids as they have enough to do during the day.

I hope you are all feeling well and have a good weekend

XX
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