Any advice?

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Any advice?

Postby jmhg69 » Fri Jan 20, 2012 7:17 pm

Hi all
Long post forgive me and bear with me please?

Very new here only got diagnosed early dec last yr but docs seem to think I have had this for at least 8yrs and just carried on!
I have been decrepit for yrs on crutches full time and have an adapted house and blue badge but do not have DLA.

Anyway this started over 18 months ago with an intermittant pain in my left side at the base of my lung I thought it was something and nothing and carried on.New Year was awful my F i L was found on his kitchen floor out cold and was admitted to hospital we thought a stroke but turned out advanced metastacised melanoma and we lost him 13th feb in a nursing home.In the interim 6 weeks I spent 5 days a week flying up and down the M6 140 miles a day to see him and make sure he was ok during school hours! I got alot worse during all this the pain was terrible but I carried on as I needed to and couldnt leave him alone.

Various xrays and tests afterwards to no avail just an infection take anti biotics etc etc. Landed in urgent care centre in just suspected pulmonary embollism due to the pain. More tests and 3 weeks of quite painful jabs to the tummy to be told here is alot of what appears to be scarring in my lungs but no sign of any current problem go away basically!

Things have gone from bad to worse since then to be honest I am now virtually house bound I tried MST didnt help am now on pregabalin but altho it takes the edge off when I am sat doing nothing it doesnt help as soon as I get up and try to do anything so I take oramorph as well!Plus cymbalta at night. Went to the hospital this week consultant tried to do the 18 point test got thru 7 and decided enough was enough and asked me where my oramorph was in my pocket says I lol (cant carry a bag on crutches!) I took it and he watched me then after 20 mins asked me if it was working I said ish he says its not enough I am recommending fentanyl lollipops foir the break thru pain.This recommendation will go thro to the pain team who I see next month and a decision will be made with input from my doc and I.

I can no longer cook clean wash myself get in or out of the shower I am exhausted all the time in bed half the day and seriously depressed! Had an assessment for care from social services last week they are starting next week with 12 hours a week to see how we go helping me with everything from personal care to laundry and cooking!Various aids for around the house are also arriving next week.

In October I decided to apply for DLA a doctor came out a couple of weeks ago she was very nice but we had to halt the assessment half way thru as I was unable to continue. Another one is coming out next week is there anything anyone thinks it is important that I mention to them whilst they are here? I am dreading this as this time I will probably be alone whereas last time I had someone with me and albeit we didnt tell the lady we did record everything that was said as I have heard various complaints about the report bearling little relation to the actual assesssment!

So any tips anyone?
Thanks for reading this far its taken me ages to write! lol
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Re: Any advice?

Postby FluppyPuffy » Sat Jan 21, 2012 12:23 am

:wave: :wave: Julia and :welcome: to the forum :mrgreen: :mrgreen:

I've moved your post into here with it being your first one, so hopefully you'll get more replies. I've also split it up into clearer paragraphs as a lot of us struggle with reading large blocks of text.

There is a lot of advice and info on here, so hopefully you'll find some useful bits in it. I haven't had a DLA assessment, so I'm afraid I haven't anything for you advice wise I'm afraid. However there are a good number of people who have been thru it, so hopefully someone will be along soon who can help more than me :facepalm: :facepalm:

The one thing I will say tho is please be very careful about recording people. From what I understand, you are supposed to inform someone that you are recording them, and you must give them an opportunity to opt out of the recording.
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Re: Any advice?

Postby ITbird » Sat Jan 21, 2012 9:42 am


Yes I've had a DLA assessment and finally got high rate mobility and middle care after a year of appeals and tribunals.

It was a tough ride but worth it in the end. The 'winning factor' for me was actually getting another GP report from a doctor in my surgery who understands fibro.

The first report was quite simply rubbish from another gp and also from the independent medical examiner. Then I accidently got an appointment with this gp one day and she was great. Said she would do me a report and she did. It explained exactly how fibro affects me.

With regards to the medical examiners, if I had to go through the assessment again I would mention the following:

-how walking is not only a big effort unaided but also the action of walking aggravates the condition bringing more pain and discomfort

-how I have to 'save' energy to complete tasks such as putting the washing away and that this one task will zap my energy again and will need to rest for an equal amount of time afterwards to recover

I don't think I initially made these points clear hence the no award decision and countless appeals.

Just write down absolutely everything you can think of about how you are affected. There's no such thing as too much information so elaborate on each answer as fully as you can.

Fingers crossed for you! X

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Re: Any advice?

Postby fibro-lu » Sat Jan 21, 2012 10:22 am

Hi Julia and :welcome:

flup and IT gave you good advice there
sorry, no experiece here
also sorry to hear you went down so quickly
glad to hear you didn't have to go through that "all in your head/nothing wrong with you" etc ordeal

all the best
all the best :cow-wave: Lu
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Re: Any advice?

Postby shazq » Sat Jan 21, 2012 3:03 pm

:welcome: to the forum Julia :wave:
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Re: Any advice?

Postby jmhg69 » Sat Jan 21, 2012 3:28 pm

Thanks for reading and answering!

Regarding the recording in your own home you can record anyone either with or without their consent apparently. I got my son to ask one of the partners at his office in a big solicitors in manchester to check.

I didn't mention but I did go throu the its all in your head thing twice once my partner was with me and he went mad told the doctor in no uncertain terms that even when I am asleep I cry out and moan in pain at the slightest movement and never keep still for more than a few mins cos of the pain. The second time was with a professor of nuerology and I told him in no uncertain terms.

I cant write anything down just signing my signature to anything is agony but I csn type albeit patchily! ( couple of lines then rest etc sure you all understand!) I have loads of things in my head and on the pc I feel I should mention and will try to put more in about how I am affected and print them for the doc to see for himself.

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