Problems with FMS and life

All your fibromyalgia experiences, questions and answers.

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Problems with FMS and life

Postby TheGingerJedi » Thu Mar 06, 2014 6:23 pm

So im new to these forums.
Im a 30 yo male and Iv had FMS for 8 years now, had a motorbike accident in 06. It took my GP at the time and the Hospital about 4 years to diagnose me which i hear is normal, when i was first diagnosed i was on Tramadol to cover the pain, my usage gradually rose through the years up to about 14 a day, Iv tried multiple jobs through the country and have just ended coming out of those worse.
I'm now taking Oramorph to get a break from the pain and take about 420ml's a week of 0.2% strength. I find that this is still not enough to cover the day as i get chronic insomnia most nights, to counter this my dr put me on 75mg of Amitriptyline. Im still suffering from the insomnia but not as frequent as i was before.

Since my move back to my home town after leaving my work down in Cambridge iv resumed talking to my Dr that i had before i left. They have been fantastic up to a point and are referring me to the pain clinic to look into sorting out stronger medication or a higher dosage of Oramorph as my Dr's don't feel comfortable prescribing it, i fully understand that and im not angry with my DR in the slightest.

My major problem at the minuet is my local councils housing department, when i moved to Cambridge i handed over my rented house back to the landlady and have come home to nothing. Im currently living in my parents wooden summer house with no electricity or heating until i find a flat in my home town, I have applied for homelessness banding due to the living conditions and on the grounds of my FMS.

I have provided the council with the relevant documents from my GP and specialist and have had multiple contacts through either meetings or emails to this department. I have been told that my condition doesn't warrant re banding and that even thou they haven't been to look at my living conditions they are saying that im not homeless.

As im sure you can imagine this on its own is enough stress to aggravate my condition and through out this whole process my Oramorph intake has raised to the amount i stated above.

Both the Housing Advice Team and the other department that deal with re banding have both said that my medical letter from the specialist isn't enough to accept, im now at a loss of what to do or where to go. I find it hard to believe that FMS isn't sanctioned as debilitating enough to receive help from these people yet it is enough to receive ESA and possibly PIP by the government. I had even turned to my local councillor to see if he could provide help but other than a few phone calls to the housing department and emails absolutely nothing has helped the situation, and now iv come to the end of my tether, the amount of stress this has put me though has increased the pain and other symptoms i suffer from more than i ever thought possible, its coming to the point that the only thing that can give me any peace now is death as stupid as that sounds but its become an un liveable nightmare all day every day.

My specialist has diagnosed me with Severe Progressive Fibromyalgia syndrome, Neurovegetive dystonia, Chronic IBS and chronic fatigue.

Any help or advice would be greatly appreciated as iv come to a brick wall and cannot pass.
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Re: Problems with FMS and life

Postby janet.clare4 » Thu Mar 06, 2014 6:50 pm

Hi there, I've just read your post and had to reply. Get in touch with Shelter (just Google for their number) and they should be able to give you help on your housing situation. They know all the procedures and are well placed to help you. I work in housing (but on the maintenance side of things so am not up to speed with Housing Management.
I think the suffering you are going through must be horrendous when you talk about death as an end to your pain. Please go back and see your doc and let them know just how much the pain is affecting your mental health too.
I didn't think the weather really affected me but by god am suffering too this week, I also have the oramorph but it scares me so try to not take it so much, silly I know.
I do hope you feel better soon and do get in touch with Shelter.
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Re: Problems with FMS and life

Postby Jeany » Thu Mar 06, 2014 7:00 pm

This is absolutely disgusting !, and you are quite right these illnesses are not recognised as they should be, and that is through sheer ignorance. I sympathise with you I really do, but please don't let the bas...ds win, because a few months down the line you could be in your own home. Keep trying.

Is there any chance that you could do private rental, or share with someone ? Believe me something will turn up. Life has a funny way of sorting things out, and just when you are at the end of your tether a solution comes out of the blue.

Take care and use the members on this site to vent your anger, but also use their wealth of information.

Let us know how you go on. x x
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Re: Problems with FMS and life

Postby *Lisa* » Thu Mar 06, 2014 7:19 pm

Get in touch with your local Occupational Therapist. They can come out to assess your living conditions. On one hand to try and help improve quality of life by talking about aids and adaptions but also if you ask they may do a letter to the council saying that your living conditions is in no way fit with the illnesses you have.

I did that and got on the list

As a Public Moderator & Admin 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...Lisa
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Re: Problems with FMS and life

Postby Kazah » Thu Mar 06, 2014 7:23 pm

Hi there
The problem could be that you are living with your parents and so a reasonably housed as far as the rules are concerned. Your parent could write a letter to tell the council that you have to be out of their house by a certain time due to overcrowding and any other reasons they can give. You have to actually be on the street to be classed as homeless and banding can be difficult to get higher on the list unless you are in need of support. If you do you should provide evidence of this.
There are very strict rules around what can be offered when you are classed as homeless and you may only be given one offer of a property. If you do not take it they can see this as intentionally homeless and discharge their duty to you.
In some ways joining the normal housing list may be a better option as most areas have a bidding system for properties and so you can choose the property you want to go for and usually can bid as many times as you want to until you get something you like.
Keep banging in the door and the suggestion of shelter is a very good one. You may have a local housing advice service linked to a local charity so google housing advice/ support and see what comes up near you. Different areas use the guidance in very different ways and so it could be good to know what works and what doesn't in your area.
Best if luck and hope you find what you are looking for soon.
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Re: Problems with FMS and life

Postby hazely » Thu Mar 06, 2014 7:39 pm

Hi try contacting your local framework they should be able to help you. Good luck with it all and let us know how you get on.
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Re: Problems with FMS and life

Postby TheGingerJedi » Fri Mar 07, 2014 4:03 pm

Thankyou for all your nice comments and help. Iv been offered a flat near my town centre through a quick key scheme, Iv accepted the flat and now just need to have a risk assessment to see if im able to accept the flat due to it been for ages 50 plus but available for younger people with health conditions. Iv already gave them them the letter from my specialist detailing my condition and those that are part of FMS.

Im going for this risk assessment on Tuesday so fingers crossed that this department accepts my condition as sever enough to warrant my moving in.

Thanks again to all of you who commented x
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