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The UKFibromyalgia Forums • View topic - Wife just been diagnosed - what to do



Wife just been diagnosed - what to do

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Wife just been diagnosed - what to do

Postby paulfoel » Thu Mar 06, 2014 12:54 pm

Wife has been ill since birth of daughter almost 9 months ago. Now its been diagnosed as fibromyalgia.

Its been tough for her especially with a baby to look after. She can hardly walk up the stairs and gets tired easily. She was planning to go back to work as a nurse in a few months but to be honest, theres a long way to go from being like she is and being fit enough to work as a nurse. After all, its not an office job.

What to do now? I'm guessing she'll have to go on the sick from work for now. Trouble is shes had a lot of time off in last few years (she was hospitalised with asthma a few times when pregnant- yes I know its all go!) and is down to half pay. In time, that'll be zero pay.

What can we do then if she can't work? Realistically, what can be claimed?

In terms of support, care - what is available? I run my own company so self-employed so need to work a lot of the time.
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Re: Wife just been diagnosed - what to do

Postby alysonpeaches » Thu Mar 06, 2014 1:22 pm

It is tough. I was a teacher and I couldnt carry on. I tried part time, couldnt even do that. I do have other health problems too and my fibro arose around the time of disc injury to my back. Then I tried two different office jobs but I couldnt cope. We had a lovely detached house in a super location and we had to give it up, we downsized and did without things. It put a severe strain on my marriage and we were separated for a while. I dont miss that life any more, I have come to a sort of acceptance. It is 10 years since I was diagnosed.

It will be hard on you as you will be doing most of the housework too as well as running around after the baby. I cannot say it will be all right dont worry. But things have a way of working themselves out. We are now in a happier place altogether. Talk it over, take it one step at a time. Look into tax credits especially child tax credits. If she is disabled you will be able to get child tax credits towards childcare dependant on your income.
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Re: Wife just been diagnosed - what to do

Postby FibroChemist » Thu Mar 06, 2014 1:33 pm

Hiya,

In all honesty, I would recommend your wife thinks very seriously about quitting her job. It takes a long time for treatment to be sorted, I'm 18 months down the line and still not anywhere near finding the right stuff. The diagnosis takes a lot of getting used to, and it's better to have no external pressures to accomodate whilst you're trying to rebuild your life. Everyone is different, and she may find that in a years time, she's ready to think about working part-time, it may take longer than that, if she ever goes back at all. I'm not trying to put a downer on you, promise, but you have to be realistic with this condition. The people on here are wonderful, and will give as much support as they can, but it will take a lot of time.

In terms of what you can apply for- there's a specific board for that on here, I'd have a skim through that. I would also look into getting either a pre-payment certificate/HC1 form to help with prescription costs depending on how much you earn, could save you a lot of money.

Make sure you communicate fully with each other, anxiety and depression are common amongst fibro sufferers. Hope that's of some help?

Hugs and best wishes.
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Re: Wife just been diagnosed - what to do

Postby paulfoel » Thu Mar 06, 2014 1:55 pm

Thanks all. Luckily I earn a fair bit which, of course, has its pros and cons.

Not sure what sort of benefits we'll be able to get if she has to quit due to my income. I'm guessing best plan is not to just quit work but to stay on sick until pay runs out if thats what it needs.

In terms of prescriptions, we're in wales so its free anyway.
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Re: Wife just been diagnosed - what to do

Postby MikH-D » Thu Mar 06, 2014 2:14 pm

Paul 6 months ago I was in same boat , I have a 15 month old now, if she needs any help support of just someone to blab too who is in same boat (I was diagnosed too when my lg was 9 months) just send me a message




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Re: Wife just been diagnosed - what to do

Postby sam4johnny » Thu Mar 06, 2014 2:22 pm

Hi Paul sorry about your wife and your situation. My partner is in the same boat as you but he is also suffering from slipped disc so it's extra tough on him. In terms if what you can claim id turn to DLA or PIP as it's now called as it's not income related. It's a hard application but with the right advice, such as this forum or CAB your wife should qualify. If you get turned down? Appeal. They turn loadsa people down coz only 20% will bother appealing. Lots of people on here have one after appeal. Anyway good luck to you and your wife. Keep communicating with each other, it's so important x
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Re: Wife just been diagnosed - what to do

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

Do you know what a fab hubby you are by finding this sight and asking for help on wife's behalf. Most of us have partners that don't understand the severity of the illness and basically ignore us struggling. Just wanted to give you a pat on the back. X
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Re: Wife just been diagnosed - what to do

Postby paulfoel » Fri Mar 07, 2014 9:59 am

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Re: Wife just been diagnosed - what to do

Postby paulfoel » Mon Apr 14, 2014 3:30 pm

Update

Well its been a few months now. Saw consultant at hospital a few weeks ago but her next appt is June. To be honest, they don't seem to be doing too much just saying take painkillers (Naproxen) and consider steroids.

Is there really nothing else? Its been 9 months now and no improvement. I appreciate that it may be long term. Looks like planned return to work in June is going to be off at least.
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Re: Wife just been diagnosed - what to do

Postby whoami » Mon Apr 14, 2014 5:36 pm

Paul...This illness is more than a pain in the butt, it is so stressful on both partners. People seem to forget sometimes how illness affects the healthy partner. The illness belongs to both of you. You both are feeling the symptoms in your own way.

I feel for you both as you are dealing with a new baby also. It will be so easy to overdo things. I don't know how the benefits work in the UK but I would think that your wife would be able to apply for some longterm support. Maybe something through her work or government.

Paul, there are many other message and treatment that could give your wife some comfort. We know there is no cure but life can be made more comfortable. If your wife could see either a rheumatologist or pain clinic it may be of some benefit. Right now it seems like you are her best medicine. You are one of a few spouses that support their partner. I got this 6 months after I was married. My hubby has been wonderful during the whole 25 years of this. Consider yourself very special.
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Re: Wife just been diagnosed - what to do

Postby paulfoel » Wed Apr 16, 2014 4:13 pm

Thanks whoami. It is tough.

To be honest, the whole experience with medical profession has been not great. Thats the NHS in the UK for you.
Luckily wife has seen a consultant and initally he said reactive arthritis but now its gone on for 10 months he says its not that which is why he says fibro. To be honest, I dont think he knows 100%.

But it is tough with a baby for her. I try and talk her into not overdoing it but shes one of those who has to be doing something which in turn makes her ill.

We've just got our daughter into daycare for 2 days a week. That was tough for wife to do but she needs a rest. Also, we've got cleaner sorted for the house.

She was back to work in June but I cant see it happening. Shes a nurse herself so its a bit more physcial than an office job. On the plus side, she'll get 6 months full pay then 6 months half pay if she needs it. So thats one thing at least.
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Re: Wife just been diagnosed - what to do

Postby FluppyPuffy » Wed Apr 16, 2014 8:06 pm



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Re: Wife just been diagnosed - what to do

Postby HeppiBean » Fri Apr 18, 2014 9:30 pm

Hi Paul. I was diagnosed with Fibromyalgia just before Christmas. I have a 2 year old and a 1 year old and I cannot express how hard it is. I truly feel for your wife.

Medical professionals don't know what to do with us. Honestly. If what your wife is currently taking is not working she needs to go to her gp and say exactly how its not working. I am currently on tablets to improve my sleep (dose has been increased 4 times since diagnosis and needs increasing again to be honest) I am also on 3 different painkillers, 2 prescribed and paracetamol but they are also not working.

It is a long journey but I have faith that eventually I will find out how to manage this awful condition. I hope your wife does too.

I'm afraid I cant advise on the work side of things as I am a stay at home mum anyway but if I wasn't I think i would be very soon! She is a brave woman if she tries returning to work.

All the best.

Katie. Mummy to 2 with Fibro and HMS.
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