flare up from hell!

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flare up from hell!

Postby winnipeg » Mon Apr 18, 2011 12:15 pm

Hi, Im a fibro forum virgin! Its nice to speak to you all. Im having a flare up from hell, and this is my 6th week off work. Im scared i wont be able to ork again, as fibro isnt settling down. It is so weird that I am ten times worse only because I had a diagnosis! Ive had fibro for around 12 to 15 years, but only diagnosed a year ago. Is this common that your body goes into shock after diagnosis?
I think the flare up has been casued by having to see Occupational health at work, and having meetings with bosses and HR, I can't seem to deal with any amount of stress at all anymore. I dont know what the options are for me, I see that most of you have such trouble getting any DLA. The government seem to be helping the people who dont need DLA and stopping the people who need benefits from having any!!
It hardly seems fair! I am on codeine (which doesnt touch me really) pramipexole, venlafaxine. Ive tried tramdol, which doesnt help at all. And just come off lyrica (which didnt help either!) as it may have been causing the hives i had for three weeks! I tried gabapentin, which didnt help. I seem to be running out of meds to try for the pain. Im trying epsom salts and peppermint and lavender oils and bio freeze. Does anyone have any other suggestions? I feel so very lucky, when I read your posts, that I have an excellent doctor, I cant believe that doctors dont know anything about fibro, or worse that they feel it doesnt exist at all!
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Re: flare up from hell!

Postby juejue » Mon Apr 18, 2011 12:30 pm

Hi,

I'm sorry I dont have any suggestions as I am pretty new to ths myself. I have been off work since November and altho the lyrica are having some effect I cant see me being able to get back to work as anytime I try to do anything like walk the dog I have a massive flare and amexhausted.

I am on amitryptaline with lyrica which seems to have a small effect on the sleeping aspect, so maybe you could try that.

I hope you find something that helps soon.

Jue :grouphug:
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Re: flare up from hell!

Postby winnipeg » Mon Apr 18, 2011 2:36 pm

Hi.
I used to have amitriptyline years ago for depression and a bladder problem, might be worth a try, thanks. I'm a bit worried tho as the venlafaxine are working quite well, I wonder if I could take both. I also like to walk my dog, I can do about ten minutes (on a good day) and end up having to have alie down as i'm shattered, or the pain might kick in, and i'll cramp up. I try to do things, even the washing up, and I start to pour with sweat, and get so tired. God i wish there was a cure!
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Re: flare up from hell!

Postby loubie » Mon Apr 18, 2011 2:59 pm

hi winniepeg :wave: :welcome: to our own little world of madness :yikes:
i can not deal with any stress at all :yikes: i just go in to meltdown :(
alot of us are like that.

it could be all the stress from work that's made you flare, and its ongoing
because you are on the sick but still worry if you can go back or not :(

i am the same, but have come to know that i can not go back.
having to sit down after any little task i do :(

i hope you sort something out and can take the stress away
then you may start to feel a little better :hugs:
loubie xx

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Re: flare up from hell!

Postby shazq » Mon Apr 18, 2011 4:30 pm

:welcome: to the forum. :wave:
Sounds like the stress from work has triggered a flare. :hugs: Stress and fibro are a big :nono:.

As you have a good gp, here is a link on different treatments used for fibro, you could print it out and go through it with your gp, there are lots of pain meds to try, its just finding the right one or combination to suit you. :goodluck1:

http://www.nhs.uk/Conditions/Fibromyalg ... tment.aspx
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Re: flare up from hell!

Postby winnipeg » Wed May 18, 2011 11:12 am

Hi all!
Nice to meet you all. I keep forgetting to go on this forum. My heads full of cotton wool. Yep, I think ive been so stupid trying to work full time, im paying for it now! im still off work. My employers are hassling me, i had to have phone appointment with occupational health last week, not ive had our HR woman ring wanting an appointment a week on thurs. I really could do without it. I am worried i will lose my job. ,y partner has said she could support me, it would be very tight, but we would manage. It still worries me tho. Also im finding it so hard to accept that i cant do things anymore, i guess im grieving for the life i once had? Im seeing a pain management therapist thursday, only had two sessions, but shes very nice, and seems quite astute. I just dont need the hassle from work. I hope it doesnt come to a tribunal or anything, i would be very ill. Best wishes to you all.x
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Re: flare up from hell!

Postby winnipeg » Wed May 18, 2011 3:08 pm

ps shazq, thanks for the info!
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Re: flare up from hell!

Postby FluppyPuffy » Wed May 18, 2011 7:08 pm

The thing you're going thru at the moment with
finding it so hard to accept that i cant do things anymore, i guess im grieving for the life i once had?
is a stage a lot of us have gone thru. It is very much like grieving for the life you used to have. It does take time, but you will eventually reach a point where you can accept that altho you have FM, you can have a life.

Is the pain management therapist working with you on practical things, or does it involve some help with how to deal with the psychological/emotional side of things as well :?: :?: :fingerscrossed: :fingerscrossed: it helps you with things :fingerscrossed: :fingerscrossed:

I'm not sure what to suggest to you as far as work is concerned as it's a long time since I was in work. Do you have a union rep or some sort of staff association person you could contact to see what your rights are etc :dunno: :dunno:
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Re: flare up from hell!

Postby winnipeg » Thu May 19, 2011 1:17 pm

Thanks fluppy puffy! Nice to have support. I do hope it settles down a bit soon. It is so hard at the moment, ive always had such a physical job, and have always enjoyed my garden, i just feel useless.
I have only had two assesments with pain clinic so far, im due to see her today. I guess it will be mainly how to deal with the psychological side of fibro, aswel as learing how to pace myself, and dont do too much, I have to find a happy medium. She will be speaking to my doc, about a physical health thingy (i forgot what she called it!) I guess it doesnt help ive had depression for many many years either. such a lot to deal with.
I will be taking my union rep in with me to the meeting. Im scared i will fall to pieces, i dont want them to see me cry and how fragile i am!
I thought of taking a dictaphone!
winnipegx
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Re: flare up from hell!

Postby denys » Thu May 19, 2011 8:51 pm

Wouldnt hurt to take your dictaphone with you and stuff your pocket with tissues, dont worry about feeing fragile. People should be made to see how your illness affects you :fingerscrossed: :fingerscrossed: :fingerscrossed: :fingerscrossed: :fingerscrossed: and :goodluck1: :goodluck1: :goodluck1: :goodluck1: :hugs: :hugs: :hugs: :hugs: :flowers: :flowers: :flowers: :flowers: :flowers:
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Re: flare up from hell!

Postby Claire Spong » Thu May 19, 2011 11:10 pm

Be careful with the dictaphone aspect of it. There are legal rules about recording someone without their permission from what I have been told. Our HR were very against it when I wanted to take one into a meeting.

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Re: flare up from hell!

Postby denys » Fri May 20, 2011 12:42 pm

If you explain about the problems you have retaining information and wish to use the dictaphone to help you digest everything properly and have no intention of using it agaist them they may allow it, no harm in trying. If you dont ask you dont get :!: :!:
Denys

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Re: flare up from hell!

Postby winnipeg » Tue May 31, 2011 3:11 pm

Hi
Thanks for all your help and support! I cant tell yuou how much I appreciate it. Unfortunately i didn't see these posts about a dictaphone!!! Next time, ill take one!
They've basically "hinted" at things, like if i approach them, say i want to leave, they'll give me a payout! They won't make me redundant (too risky for them) But they said they might have me on capacity, where I wouldn't get any payout. They say I am not eligible to be medically retired as Fibro isn't permanent, but I thought it was? I know its a fluctuating condition, but thought that it was permanent?
My union rep advised me to try and ignore everything, concentrate on getting better, and don't say anything! But then that means this drags on, and my nerves are shot, I'm hardly sleeping, and can't stop crying!!!I just want it all over with.
This seems quite early days to be talking about capacity and things? I havent quite been off sick for three months yet. I know people have been off a lot longer, who didnt get hassled like this.
I guess I will just have to wait and see?
x
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Re: flare up from hell!

Postby denys » Wed Jun 01, 2011 4:48 am

Employers seem to be harder on FM sufferers and lots seem to think its something that will disappear as quickly as it appeared. Dont let them push you around, could you get a letter from your doc stating that as you have had the condition for so long it is unlikely that it will clear up on its own :dunno: :dunno: :dunno: :dunno: that might help to shut them up :fingerscrossed: :fingerscrossed: :fingerscrossed: you manage to get the right decision for you and not for just for them :goodluck1: :goodluck1: :goodluck1: :goodluck1: :goodluck1: :goodluck1:
Denys

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Re: flare up from hell!

Postby winnipeg » Wed Jun 08, 2011 11:56 am

Work will be consulting Occy health at the end of this month, to get my GP to write another report to them. I have to see the doc this week, anyway and will have a word with her about it. I just want work to leave me alone, so i can concentrate on getting better (somehow) Im so very depressed at the moment, the only fight i have left is to get out of bed every day. I even tried swimming monday, had the worst headache yesterday. altho I mainly floated about not actually swimming a lot. :needhug:
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