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The UKFibromyalgia Forums • View topic - Hello :) and Help? :(



Hello :) and Help? :(

Introduce yourself and find fellow sufferers in your area or who share the same interests.

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Hello :) and Help? :(

Postby ciderpig122 » Sun May 29, 2011 5:36 pm

Hi Guys

I am going to introduce myself then have a look at all the other recent newbie posts, sorry if this is the same as all new fellow sufferers, I just need a chat and someone who knows what I am going through.

I have PMLS (sleep disorder) that meand I kick my legs in my sleep and wake my brain up at least 30 times per hour every night, I have OCD and I have just been diagnosed with Fibromyalgia and Joint Hypermobility.

I have fought for over 6 years for a diagnosis for my pain and got absolutley nowhere except given enough co-codamol to bung an elephants bottom up :crazy:

Recently after a visit to a rheumatologist he confirmed my fears and diagnosed me with Fibromyalgia and Joint Hypermobility. He has recvommended paracetamol 4 times a day every day regardless of pain intensity and he is writing to my sleep doctor to see if I am allowed *amitriptalyine* 10mg per night, as I am on dexamphetamine for my sleep disorder and it would mean downers at night and uppers in the day :twodrinking2:

So....I thought I was fine, but these last 2 weeks Ive started with a shocking bout of depression, work are less than useless and the DLA forms are making me ill just thinking about them.

I have no intention of giving up work but including travel I am out 11 hrs a day at work somethimes its 10 days with only 1 day off in the middle, so I have asked for 4 days instead of 5.

Anyway, where di you all start with DLA and a blue badge? I am having enough trouble getting out of bed at the moment let alone writing down all my OCD stupid attacks and how the pain cripples me, in the hope someone may believe me. I cant even get a good chair at work LOL

anyway, Hello and look forward to getting to know you all :)
Fibromyalgia, Elher Danlos Type Hypermobile, OCD, Asthma, PTSD.
Im not ill, I am just special :D
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Re: Hello :) and Help? :(

Postby twighlight30 » Sun May 29, 2011 5:58 pm

Hi there sounds like you have an awfull lot on your plate right now, i have joint hypermobility and fibro, and m.e its pants to b honest but go to your local c.a.b office and someone will sit and fill the form in with you, Im not much further forward its going to tribunral soon its bn a year since i applied but it should b soon now. Get in touch with h.r at work or occy health and get a workplace/area assessment by law they have to make it a more comfortable enviroment for you to be in, its all about health and safety or somthing.

Well good luck with it all anyway. :)
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Re: Hello :) and Help? :(

Postby shazq » Sun May 29, 2011 6:14 pm

:welcome: to the forum ciderpig :wave:

It sounds as if you have lots going on at mo. :hugs:

like twighlight said you can get help filling in your DLA form from your local CAB office or welfare rights, they will go through everything with you.

Some councils will issue you a blue badge without higher rate DLA with a doctors letter so its best for you to call your local council to find out. :goodluck1:
any questions just ask :wave:
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Re: Hello :) and Help? :(

Postby FluppyPuffy » Sun May 29, 2011 6:33 pm

Hello and :welcome: to the forum :wave:

How do to cope with working and the effects of periodic limb movement. With how often you say things are disturbed, does this mean ypu have the full-blown Periodic Limb Movement Disorder, or are you at the milder end of the spectrum??

As shaz and twilight have said, there are organisations who will help and advise you with completing the forms for DLA. If you don;t have a local CAB or Welfare Rights, you could try DIAL or your local council one stop shop type of place.

There is a lot of info and advice on here, hopefully you'll find some answers to things you're wondering about :wave: :wave:


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Re: Hello :) and Help? :(

Postby denys » Sun May 29, 2011 6:36 pm

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

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Re: Hello :) and Help? :(

Postby ciderpig122 » Sun Jun 05, 2011 8:58 pm

Hey everyone

Fluffy- its full on PLMS, the doctor said my sleep study showed my PLMS wakes me every othe minute so if I think I have had 8 hrs sleep its actuall 4 hours and none of it is restful and I spend alot of it in REM sleep and dreams sometimes merge to reality and I recall conversations with people when it was actually a dream LOL

Work is awful, I am crying roughly 4 times a day there at the moment, I went to Occ health in March as the chairs were crippling me, they got me a back rest in May and its really bad, it slips down the chair and is useless I have asked to reduce my hours from 39 over 5 days to 34 over 4 days and they are making me wait for a decision, when a lady brough a letter in saying she had depression and her hours were reduced immediatley, my line manager has advised me to raise grievance :crazy: I just want to work as much as I can without getting upset or crippled

I cant get to my CAB as ist 10-12pm 2 days a week and I work LOL

My doc is amazing though I wnet there and he is calling me in as soon as he gets my blue badge forms and he said we will do them together, I did it before DLA so I can park closer to work as its more of a priority.
Fibromyalgia, Elher Danlos Type Hypermobile, OCD, Asthma, PTSD.
Im not ill, I am just special :D
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Re: Hello :) and Help? :(

Postby shazq » Sun Jun 05, 2011 9:09 pm

Hi ciderpig
Sorry you are still struggling at work,one of our members has put a post up in works and benefits which might be worth a read.

viewtopic.php?f=11&t=10001#p106405
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