Any advive re ATOS (Fibromyagia)

andrew71

I am due to go for a medical with ATOS middle of this month. I suffer with Fibromaylgia and ME/CFS. My wife will be going with me as my memory can be really bad some days especially if under pressure.
I'll be going in my mobility scooter from where we park as it could be a distance from the car to the building and just using my walking sticks could make me more tired than normal.

Any advice from anybody here with Fibromyalgia regarding ATOS Medical? I know that on the day I could actually be having a good day but then as anybody with Fibro ME/CFS knows each day is unpredictable. How do you get across that with this illness one day you can be fine and the next day you could be really bad?

Any advice much appreciated thanks

Anubis_2

Is this for ESA or DLA? It depends how severe your fibromyalgia is. I have it severe, however, I do also have other medical conditions that my specialist now says exacerbates the fibromyalgia, such as Thalassemia, MS, CHF, RA, Asthma, Hypomobility, so, if I had fibromyalgia on its own it may not be as severe.

I do however, have other conditions as a result of fibromyalgia, such as Reynauds, IBS ( I also loose bowel control about twice a week now which is bloody awful but they said that it is down to the MS), TMJ, CFS and RLS etc

Do you have any other diagnosed conditions as a direct effect of your fibromyalgia, or has the specialist only diagnosed fibro and CFS to you and on your medical records? If you have any other diagnosed conditions that relate to the fibro I would mention them and how they affect you. In my case the Reynauds, TMJ etc was diagnosed individually before fibro was, but they are a result of fibromyalgia.

Sometimes we don't realise how much things do affect our daily lives because we "learn" to live with it. It has taken me a good 15 years to realise I am never going to get better and realise that I am dependent on others, no matter how much I hate that, and having to do such forms/medicals makes you realise more and it can be difficult.

Anxiety and stress also exacerbate fms symptoms - so it is likely that you may have a difficult day anyway, just try to stay as calm as you can as you will be aware that the effects of such anxiety etc can last for days as far as fms is concerned.

What I would do, whether other conditions related to fibro/cfs have been diagnosed or not, is to try to keep a diary for a week of your total care needs, your symptoms and severity of such, what you are able to do on a better day and what your limits are when in a flare.

This will give you a more reasonable idea of your needs over a week or so as you will undoubtedly have other conditions relating to fibro that may have not been dx yet depending on the severity of it. It's akin to MS, some people get it and find they can lead a relatively normal life, and control pain through medication. Others get it and it can be like they have done ten rounds with Mike Tyson day to day.

CFS while making you feel exhausted can also have the effect of keeping you awake, or sleeping more than average - personally I very rarely sleep - and never during the night, the most sleep I can manage at one time is around 2 to 3 hours due to pain and other symptoms. There are times when I can be awake for over 48 hours before falling asleep - what is your sleeping pattern like? Make sure you record your sleeping pattern and if you need any help during the night if you are awake etc

How is your pain management? Do the meds help? I am not sure if we can mention actual meds, but whatever has been prescribed, make sure you list it, although from my experience pain meds do little.

I haven't been to an ATOS medical for ESA, but I have had an ATOS medical at home in respect of DLA and there hasn't been any issue, and although I do have more going on, it is not necessarily what you have that is important, it is about how your illness affects you.

I know it is difficult with the brain fog - and this is why I suggested a diary. Sometimes it takes me 30 minutes to do a post as I forget what I say and have to keep re-reading over and over, and if your brain fog is particularly bad, let them know how bad it can get as you did remark on poor memory. This can be considered a danger too, in the earlier years when I was able to mobilise a little more, I set fire to the kitchen twice in three weeks :eek:

I am presuming you don't drive or do you, as you mention someone going with you due to memory? If you don't drive, and cannot drive due to the fibro, let them know. I was never allowed to drive but there is no way I would do anyway, I would be a loose cannon on the road - brain fog is enough of a reason not to get behind a wheel anyway if you suffer badly with it.

Equally on your better days, let them know what you may be able to do - again the diary will come in useful for that, so they can get a full picture of the variable nature of your condition. Good luck and let us know how it goes

Rochelle

Have a look on Fibromyalgia uk website as they have a lot of good info concerning Atos/benefits and Fibromyalgia.Here is the link that takes you to the page about benefits, hope all goes well for u this is going to be me soon as i just got my medical questionnaire and it is already making me stressed.

http://www.fibromyalgia-associationuk.org/information-packs-mainmenu-58/benefits-articles

Anubis_2

One more thing, there are times I have to use speech software via the computer, if you have to do that, let them know. Infact anything that you use or need to do differently, mark it down. An accurate diary can show you just what your needs/ capabilities are.

If you are not able to write it down, use a recording device. You can record via your computer if you have no dedicated device.

rogerblack

Anubis wrote: »

anything that you use or need to do differently, mark it down.

This - really.

Do not skip over questions, as you do not consider them 'important', or what your 'real problem' is.

Look at all the questions, and spend a reasonable amount of time thinking if there is any way that a stranger that knows everything about you could make a convincing case that there is a problem.

Zziggi

If you use a scooter- how does this fit with the "ability to mobilise" question?

Cpt.Scarlet

Zziggi wrote: »

If you use a scooter- how does this fit with the "ability to mobilise" question?

It doesn't, it is only relevant to self-propelled wheelchairs.

Zziggi

So the fact you drive in, say 300m from blue-badge parking into the assessment centre, on a scooter should have no (adverse) bearing on the ability to mobilise question?

I ask 'cos my OH cannot walk far. OH has a blue badge but doesn't go out much due to difficulty in mobility. OH does not have upper body strength enough to "mobilise" a self-propelling wheelchair (is in the ATOS complied DLA report carried out in last 12 months). I can't push OH as I have back probs myself. This is why OH has an electric scooter. We struggle enough when we do go out having to get the scooter in & out the car. Anyway, I digress - my concern was that when OH has the ESA assessment, my concern was that if OH used his electric scooter then this would adversely affect his assessment as he is able to "mobilise" on the scooter. I wondered whether it would be more sensible to walk with crutches into his assessment despite it taking OH forever & cause immense pain (but at least the HCP would see the distress walking causes) what do people suggest?

Cpt.Scarlet

Zziggi wrote: »

So the fact you drive in, say 300m from blue-badge parking into the assessment centre, on a scooter should have no (adverse) bearing on the ability to mobilise question?

I ask 'cos my OH cannot walk far. OH has a blue badge but doesn't go out much due to difficulty in mobility. OH does not have upper body strength enough to "mobilise" a self-propelling wheelchair (is in the ATOS complied DLA report carried out in last 12 months). I can't push OH as I have back probs myself. This is why OH has an electric scooter. We struggle enough when we do go out having to get the scooter in & out the car. Anyway, I digress - my concern was that when OH has the ESA assessment, my concern was that if OH used his electric scooter then this would adversely affect his assessment as he is able to "mobilise" on the scooter. I wondered whether it would be more sensible to walk with crutches into his assessment despite it taking OH forever & cause immense pain (but at least the HCP would see the distress walking causes) what do people suggest?

The mobilising test is concerned with how far you can walk OR how far you can propel a manual wheelchair, irrelevant of whether you use or own one.

Using a scooter, does not mean that you are unable to walk, you need to show that you cannot walk more than 200m to start to score points, nor does it mean you do not have the upper body strength to propel a manual wheelchair, in fact it could be argued that unless you have a scooter with power steering, it actually suggests you do.

Anubis_2

Cpt.Scarlet wrote: »

The mobilising test is concerned with how far you can walk OR how far you can propel a manual wheelchair, irrelevant of whether you use or own one.

Using a scooter, does not mean that you are unable to walk, you need to show that you cannot walk more than 200m to start to score points, nor does it mean you do not have the upper body strength to propel a manual wheelchair, in fact it could be argued that unless you have a scooter with power steering, it actually suggests you do.

What about electric wheelchair - are the same conclusions drawn?

Cpt.Scarlet

Anubis wrote: »

What about electric wheelchair - are the same conclusions drawn?

To drive a scooter, you need at least one arm, usually both, elevated to hold the handle bars and you need to exert force from your upper body to turn the handle bars and consequently the wheels.

I'm no expert on electric wheelchairs, but my impressions is that they are controlled using a joystick on one of the arms, only a little force is required to move the joystick and any turn is powered by the motor.

PS. My point in the previous post is that, whilst people should be concerned about the assumptions that ATOS will make, they are looking at the mobility test from the wrong direction.