Fibromyalgia - Help to stay in work

Jo_King

I was diagnosed with FMS 8 years ago, but have managed to stay in full time work. I've learned to hold my pain to one side and get through a day at work. I do love my work too - I get frustrated that I'm not able to be more productive, because I really do believe in what I'm doing. But after a day at work I'm wrecked. At the moment I'm swimming 30 minutes a day - it's doing me good, physically and psychologically, but it leaves me exhausted.

I'm in pain pretty much everywhere most of the time. I get very little restful sleep (I've tried amitryptiline, but it didn't agree with me). I'm sensitive to even light touch. I get muscle spasms which are worst when I'm tired or have to sit in one position for a long time. I've also developed really bad shakes in both hands which I'm currently controlling by sitting on them when it starts!

I'm also finding I spend a lot because I have FMS. I have shiatsu fortnightly (which keeps me moving - without it I'd be much stiffer). I have a gym membership for the swimming (though at the cheaper 'Clinical Population' rate from Total Fitness). I have prescription charges. It totals at around £100 a month - a sizeable percentage of my income. That's £1,200 a year, without thinking about the fact that I can only wear very soft fabrics, have to wear expensive shoes, am 100% reliant on my car, and all those other extra little expenses of FMS.

I'm just deeply confused. I'd love to cut to 80% of my current hours, but then I couldn't cope financially. Any cut in income would mean I couldn't afford the shiatsu - which is the one thing that really works for me. I'm worried that 100% of my energy goes into work, or keeping myself fit enough to be able to work. I'm also finding it increasingly difficult to manage a full day at work with the pain.

There doesn't seem to be any support available. Because I manage a full day at work, and my pain is invisible, I don't seem to be eligible for DLA. My employer isn't well off enough to be able to make adaptations at work. I can't get a blue badge for the car, because I'm sometimes able to manage to walk quite long distances (and sometimes I can barely stand up for 2-3 minutes because it hurts too much).

Sorry. This is a bit of a whinge. I just feel very alone at the moment, having to muddle through on my own. And I'm tired of being told how much people admire my strength. I'm very, very tired and would gladly stop being strong for a while. It seems like I've made my own bed by coping too well, and now that I'm desperate for a break, there's nowhere to go to find one.

I have an appt with the Citizen's Advice Bureau this week for a benefits check. In the meantime does anyone know of any financial support available to help people with disabilities to stay in work? Thanks. And sorry for the long moan!

somebody_else

Jo_King wrote: »

In the meantime does anyone know of any financial support available to help people with disabilities to stay in work? Thanks. And sorry for the long moan!

Huge (but very gentle) hugs Jo.

I'm sorry, but you're not going to like what I type next. Unless things have changed dramatically in the past couple of years, there appears to be quite a lot of things available in order to allow an unemployed disabled person to get a job, but absolutely nothing available to enable a person who becomes disabled to stay in work.

The one thing you could look into is Working Tax Credits. That might allow you to go part-time and have your earnings topped up, but I'm not sure you can get that unless you're in receipt of DLA.

I do hope someone else can come up with something more positive for you.

somebody_else

Jo_King wrote: »

I have prescription charges. It totals at around £100 a month - a sizeable percentage of my income. That's £1,200 a year...

If your prescriptions are from a GP, then get yourself a pre-payment certificate - that'll save you over a 1000 a year, for a start.

Jo_King

Thanks for the reply. The £100 a month is for the other treatments plus prescription charges. The prescriptions are around £10 a month, sometimes less, sometimes more (my GP is good about giving me bigger quantities) so so far, the pre-paid route doesn't work out any cheaper... Nice thought though!

I'll ask the CAB about the tax credits.

bigturnip

Regarding help at work, you mention your employer couldn't fund adaptations, have you tried the access to work scheme? It provides funding for adaptations in the work place and they will liaise with you and your employer, assess any needs you have and get the necessary adaptations set up.

Whether you work or not should have no bearing on DLA, it is based on your ability to carry out everyday tasks and you should tell them what you are like on your worse days.

Your GP sounds quite good so they should be able to help with an application for a blue badge if you are eligible for one.

If you are working a full week, see how much working tax credit you would be entitled to working a 30 hour week, this is the minimum amount you need to work to be able to claim the highest level of working tax credit.

Jo_King

Thanks for your replies.

I saw the CAB person this afternoon. I think we've worked out that I could go to 75% of my current hours and be able to manage financially IF I could get DLA and therefore get the disability element of working tax credit. That much sounds good.

But (why is there always a but), the advisor reckons I'll struggle to get DLA - he says very few of the folk with FMS do, and he says they will wonder why I've gone for 8 years with DLA, and am asking for help now. Also, I've no current consultant reports (I last saw a consultant, and did the pain management programme way back in 2003!). I therefore have only my GP recognising that I've recently reached something like a state of exhaustion. While he did advise that I apply, he also reckoned I shouldn't be too hopeful. So, all in all, I'm feeling a little depressed this evening...

pascha_2

Jo
I have FMS , get DLA and work.
turn things around - DLA is about need - not about what help you actually get. If you had help - would you have to wait for ever in bed in the morning until pain and stiffness subside before you got up. If there was help would you struggle in intense pain to get pain killers before you could function. When you are desperate for the loo, but pain is intense and muscles are in spasm it takes for ever to get out of a chair, and you often stumble because there is no one to help. Would life be more bearable - and safer if you had help?
How about when you want to eat but you are so exhausted it is all you can do to put a meal in the microwave - you cant peel or chop veg because your hands and arms are burning in pain?
If you had help with walking - even an arm to hold onto or someone to lean on to have a rest- would you be in such intense pain for hours or days after walking?
FMS often get turned down by the decision makers - but have an award made at appeal.
ts worth trying at least?

kanes_son

Jo_King wrote: »

Thanks for your replies.

I saw the CAB person this afternoon. I think we've worked out that I could go to 75% of my current hours and be able to manage financially IF I could get DLA and therefore get the disability element of working tax credit. That much sounds good.

But (why is there always a but), the advisor reckons I'll struggle to get DLA - he says very few of the folk with FMS do, and he says they will wonder why I've gone for 8 years with DLA, and am asking for help now. Also, I've no current consultant reports (I last saw a consultant, and did the pain management programme way back in 2003!). I therefore have only my GP recognising that I've recently reached something like a state of exhaustion. While he did advise that I apply, he also reckoned I shouldn't be too hopeful. So, all in all, I'm feeling a little depressed this evening...

I am so sorry to hear that an advisor said that. I went to an advice point (not CAB) near where I live and not only did the advisor say I was in a position to apply for DLA, he also filled out the form for me by asking the questions in such a way that made it a lot easier to understand (any question should be answered in regards to the days when you where at your absolute worst).

As a result, I was awarded high rate mobility and low rate care first time, no appeal needed.

If you do a minimum of 16 hours per week, you will receive working tax credit and disability tax credit, which makes a hell of a difference, and you may also be entitled to an NHS exemption certificate which not only means you will get free prescriptions, you will also get any necessary travel funds refunded.

Ask if you can see someone else. There are people who are trained especially to help disabled people to get their entitlements at all advice points, and if you don't get any help where you are, go elsewhere if this is at all possible. You are entitled to DLA if you have Fibromyalgia, don't let anyone tell you otherwise.

Gentle (((hugs))) and good luck :A

Jo_King

Thank you both for your messages.

I've never thought of it that way Pascha. You're spot on with the setting the alarm clock half an hour earlier so that I've time to wait for the pain to subside before getting up. I'm so used to struggling through on my own I've not really given myself permission to think of how it would help to have someone else around!

And good to hear from someone who got DLA without going through the appeal. I am going to ask for someone else to help fill in the form, and I'll have a chat with my GP about him supporting me. Not the next appointment though. That's to see if he can do something about the shaking - I spilt a mug of tea over myself yesterday!