Hello - new to group

[Guest guest]

Well, where do I begin ? I'm new to this group business but not new

to fibro, although by some people's standards, maybe I am as I was

only diagnosed in Jan 2000.

I'm also not too good at this cutting and pasting bit with bits from

emails (fine if it's on Word! lose it when on line!!) Anyway, I'll

try and answer the questions through.

My name is and I'm 50 years old. In November 1998 I had a fall

at work and sustained a whiplash injury. I haven't worked since. I

used to be a secretary and I cannot now sit in one position long or

be at a normal computer for more than a few minutes. (I usually use

a laptop on a padded lap tray sat back on the settee with cushions at

my back and neck).

When my injury did not fully clear up after a few months, and I was

experiencing pain in other places than my neck and shoulders, I was

referred to a rheumatologist. I had blood tests, xrays, drug trials

for arthritis but I was getting worse, not better and nothing showed

up in the tests. Finally, the rheumatologist did the tender points

test and asked more questions and he concluded I had Fibro. Until

then I had never heard the word and certainly didn't realise it was

such a life changer!

That has been the hardest thing for me to accept, that my life has

changed and isn't about to change back again - at least, not

overnight.

At first I tried to get on with things such as going on holiday,

going to the theatre, trailing round the shops - but it all had to

be " paid for " in time out in bed with hot water bottles and heat

packs in various places to ease the pain. I learned to space these

events out and to accommodate them but then at the end of February

this year, I turned over in bed and slipped a disc! Since then I

have only been out of the house 3 times for medicals and once last

week I went out to post a letter - the post office is about 300 yards

downhill from me, I can see it from my front door - it took me 30

minutes to get there and back and I was crying with pain and had to

take to my bed again for 2 hours.

I share my home with a friend and 4 cats (2 are hers and 2 are

mine). My friend does a lot of " caring " for me and does all the

shopping and housework that I can't do. Unfortunately, she has

arthritis in her hip and is awaiting a hip replacement even though

she's onlt a year older than I am, so sometimes it's a case of " the

fittest on the day does the work " !

We understand each other's pain and frustrations but other family and

friends don't realise how bad it can be and expect us to get on with

things and not let our conditions take over our lives. Good thinking

but not always able to put into practice.

I've found it difficult to keep up any romantic relationship as it

needs too much energy and it's hard to explain why a 2 hour dinner

date can wipe me out for a couple of days. Maybe it's just the men

I've been out with!

I managed to get some disability care allowance but that is partly

because I have carpal tunnel problems with both hands too. I know

this is sometimes listed as a symptom of FMS but this started on and

off long before my fall and I had no other symptoms at that time. It

has worsened since the fall and affects both hands whereas only my

right had any cramps before. Now I've had one op that didn't work

fully and am awaiting more nerve tests before they'll try again or do

the other hand. In the meantime, my thumbs " trigger " and become

stiff and clicky when I move them.

At " that time of month " I find I suffer more pain and being the age I

am I thought the heat/cold imbalance was all to do with the

menopause, in fact, it's hard to say which symptoms are FMS and which

are menopausal when you read some of them out - has anyone checked to

see if it affects more women in this age group? Has anyone done

hormonal tests? I know it affects some men too so it can't all be

hormonal, but does anyone know if hormones affect it?

I'm on various painkillers which only keep the pain down and I take

an anti-depressent and a sleeping tablet at night to help me get off

to sleep. They don't keep me knocked out for 6 or 8 hours

unfortunately but at least they let me get straight back to sleep

after waking 5 or 6 times a night. Occasionally I get a short run of

wide awake nights where nothing helps.

I haven't had a bath in years - no, I'm not filthy and smelly! I

take showers because its less painful than trying to lift myself out

of the bath - I can also direct a hot spray onto a particularly

troublesome spot if I need to. I find heat helps soothe more than

ice cold, although I've had to give up using a hottie in my back

since it caused the skin to discolour and blister!

For anyone trying to get any benefits I'd say, be truthful but give

up your pride. By that I mean, don't say you can do the things you

find so painful just because of your pride, let the doctors know you

need help even if it is embarrassing. Also, when filling in forms,

if you can, get someone to write it down for you but only answer what

they ask, don't elaborate. With pride and a " chatty " manner you can

talk yourself out of much needed help!

My hands are hurting and my back is very sore so I'll finish this

here. I can always add more in another post if that's OK. I live in

England by the way and it would be good to hear how different places

treat this disability. There is one other thing I'd like to know, am

I disabled?? I can't work and have lots of problems but does that

mean I should " register " as disabled? If so, how? and will it

benefit me to do so?

Take care everyone,

.