Question about Disability Benefit

Hi Lynb,

Just back from the optitians. I have a problem with my eyes, particularly the right one, and need to be referred to hospital. I was warned years ago that problems may develop later in life, well later in life has arrived.

I have pains when moving my eyes but put this down to CS as it can cause eye pain, I also have something wrong inside my right eye but I expect this is due to the injury I had 12 years ago.

Lynb do your hands, feet and legs swell up at all? Mine do every day, particularly my right hand, the pain and swelling got worse after I had Carpal Tunnel surgery which I should not have had.

Another symptom of CS is chest pains, I get these as well and had several tests which ruled out any heart problem.

You are lucky to have the help from your daughter, she is an angel to do so much for you. This is something else our governments, whichever colour they mey be, take for granted.

As for some of my friends not understanding all the effects of CS, this is probably because before I was so fit and active. Two or three times a week, after a hards days mannual work, I would go to archery and shoot a powerful bow for a few hours. Now I can't even hold my bow let alone shoot it, this is very annoying as it was I sport I enjoyed and was good at. Our club would also help raise funds for local charities.

For a coulpe years I have belonged to a model railway club, to begin with I could make so many buildings etc from thick plastic but now I can't even hold a knife to cut butter.

Another thing that the DWP don't consider is the frustration and boredom we have to endure through not being able to do the simplest of things.

Cheers,

Janner

Hi Janner. Can't you claim DLA as your eyesight is poor? You could walk into DWP office with a white stick tapping walls and floors and you might get somewhere? They can't argue with a partially sighted person! If they do, poke them with your stick.

Yes, my joints do swell but this is due to the bone thickening in my arthritic joints. The thickening bone is putting pressure on the tendons and I get painful swellings. Doctor said I can't do much for this apart from anti- inflammatory creams. Can't take tablets due to my asthma. If I was a horse, I would have been shot years ago!

I know what you mean by fit and active. I worked 2 jobs and played squash every Friday and Saturday. I loved to walk and had weekends away hill walking. Now I can't get to the shop on the corner! My hands don't work and some days I struggle to pick up my cup of tea never mind hold it. The chest pains are caused by the CS. Not sure what it is but something to do with the spinal pressure pushing into your chest. I had an ECG last year due to chest pains but it was my CSM causing them. I needed to use an extra sheet on my DLA form to tell them about all the tests I have had in the last year. Good job I keep a diary!

As for my daughter, she deserves a medal but carers get little or no recognition when it's a family member they are looking after. She is definately an angel and I am lucky to have her.

I had a look at the side effects of the Gabapentin and one of them is muscle pain/spasms. As I am on a really high dose which helps the pain in my hands, I am hoping they don't decide to reduce them if it is side effects. My muscle spasms are so painful and knock me off my feet.

Life is a bugger and if I'd known that getting older was like this, I'd have looked after myself better. However, I still got turned down for DLA? Do I have to be virtually dead before I get any extra help? I would love to have the money to treat my daughter once in a while!

T.T.F.N and take care

Lyn

hi everyone, i posted on here a while ago but i had problems with computer so havn't been on for a while, story so far, hubby got turned down for dla saying his needs would be likely to reduce by july so he was not entitled , we asked for a full statement of reasons and a copy of report they got from his gp , thinking this was the problem, yet the report agreed with everything we told them in the forms and the statement of reasons said nothing more ,we sent off the appeal form saying that they hadn't actually said he wasn't entitled now, just that he wouldn't be in 6mth ,so asked them if that was the case how would it work at the appeal, as we understood they would only take into consideration evidence at the time of the decision, but if this was the case surely it means we will need to produce evidence to prove he still has the needs 6 mth later, as that's the only reason we had been given for turning his claim down, well we got a phone call from the decision maker asking how his condition was now ,he said the claim was turned down as they thought his needs would have reduced but as thats not the case they would now write to his consultant ,even then they will still find a reason to say no, i will keep you informed , anyway i was wondering if anyone can help with the results of the latest mri or offer any advice it says there is a narrowing of the entire cervical canal with only a small amount of subacrhnoid fluid anterior and posterior to the cord the cord appears a little flattened due to this narrowing any help would be apriciated thanks

Hi Julie

Sorry to hear you've joined the 'sod off and you're not getting DLA' club like the rest of us on here. Lets just hope they do the right thing and sort it out.

There are a lot of different sites about spinal problems which I have been reading as I have varying dianoses with regards to my spinal conditions. The one you describe sounds like Spinal stenosis? Not medically trained so don't take my word for it! Have a read through some of the sites as they may give you more information on what to expect . Just put 'spinal stenosis' into google and you will get loads of information which may make things clearer for you.

Best of luck and happy reading

Let us all know how you get on and best of luck

Take care

Lyn

Hello Everybody: Cant sleep I'm in so much pain - I've been up since 5am

Janner I've got everything that you suffer from, and I really know how you feel, and everybody else - I'm sorry about the CSM title but it seemed to fit to what I was trying to say.

I was interested in the \"Radiculaphathy\" because a few years ago I got this horrendous pain in my left upper arm -I went to see my GP but she didn't seem to be very interested in it - I told her a the time that I was going to need morphine because I couldn't stand the pain but she wouldn't give it to me. I went on holiday to Spain the pain became too much for me and I was sent to hospital by ambulance.

The Spanish gave me a full range of tests because they thought that I was having a heart attack but it wasn't that - This pain was the worst pain that I've ever felt, and believe me I been through the pain barrier many times!!!!

It wasn't possible for me to lay in a bed, so I had to sit in a chair - this lasted for two months - This was the worst two months of my life - this may seem strange but the pain was so intense that I was unable to walk!

because my brain couldn't handle the pain.

These idiots from the DWP dont seem to realise that CS causes other problems throughout your body - You cant brush it all off to \"wear and tear\" they love this saying It's like they're saying that everthing that you've got is \"normal\" so put up with it, and shut up asking us for money.

I love all your postings - lets all keep laughing through our pain.

Lyn and janner you're a right pair? You're sending me on my holiday to Norfolk laughing - well done. I'll look forward to hearing from you all when I come back in 2 weeks time Bye Alan

Hi Lynb, Julie and Alan, and anybody else interested in this thread.

I may have to keep postings short as the pain in my right arm and shoulder is now very intense and painkillers don't help.

Firstly Alan, don't forget to wear oilskins, wellies, sou'wester and lifejacket while sitting on the riverbank when you go on your fishing holiday. This will give you practice for when the DWP send you to work on the deep sea trawler. When you fall overboard from the trawler the DWP will say that it was your own fault as you should have tuned your vertigo to the rolling of the boat.

Regarding \"stenosis\", I believe it is the name given to the spur and bony growths associated with CS. These growths press into the root nerves and spinal cord which then send pains throughout the body. However, with our CS experiences I find the worst pain is that caused by stress of dealing with the DWP.

I am waiting to see if there is a report in my local paper next week about an incident at our local jobcentre. On Tuesday an ambulance, paramedic and police were called there. It may have just been a training exercise for when all the disabled are kicked back onto JSA and have to sign on each fortnight. Or maybe it has already begun and some poor sod was actually taken by ambulance to sign on, with a paramedic there on standby and the police dealing with the major traffic jam on the busy road outside caused by the ambulances.

Brief rest.

I have a neurosurgery appointment on the 13th of next month at the dreaded Dereford hospital in Plymouth, not the easiest place to get to from Cornwall when you don't drive. There is no direct bus to Plymouth from here, I would have to changes buses a couple of times. I hate Plymouth and will probably get lost anyway, I am trying to see if a friend will take me up. There are a couple a charitable transport services but for the distance involved they wil be very expensive. When claiming travelling expenses you only get a fraction of what it actually costs if you go by car, it will be about an 80 mile (sod kilometres) round trip. I do not want an operation yet as I feel it will only make things worse, I will wait until my condition is more severe. However, I would like answers to a few questions regarding the longterm outlook of my CS. The last doc I saw at neurology said there was nothing they could do and discharged me, but I requested a second opinion. A yet I have heard nothing about an appointment for physio.

Did I say I would keep this short?

Cheers,

Janner

Hello All

Hate to rub it in but I am high as a kite at the moment! Mixture of Gabapentin, Tramadol, Co-codamol and Diazepam (as required). Still have pain but don't really care.....

Muscle spasms are side effect of Gabapentin, can't reduce them as the nerve pain will fire up again so having to take anti spasmodic diazepam to counteract side effects. Co-codamol help with the arthritis pain and the tramadol help with all over pain. Who needs illegal drugs when you can just develop CS? Not taking them all at once but varying at different times.

Bring on the DWP so they can see me drooling from the corner of my mouth and smiling when asked to stand or bend or some other ridiculous instruction. Still waiting for my appointment to see Neurosurgeon and found out I was taken off the list? Been put back on now after they were given a stern word from my GP. Have no idea why this happened but sorted now even though delayed somewhat.

Forgot my original intention now as I got carried away? Think I was going to mention something about a website. However, there are so many sites referring to CS and CSM and a huge amount of information available so we can all read up on our personal conditions.

Stenosis and Radiculaphathy are effects of severe CS but it gets very complex and different conditions are mentioned. They claim spinal conditions are caused by injury ie: sports etc and also the dreaded 'wear and tear' so if the people from the DWP read up on our condition, they won't believe us that is a degenerative medical condition. That's probably why we never get anywhere? We need someone on our side to create a new site with the reality about how CS affects some people and not play on the majority who suffer no symptoms!

Knew I would get there in the end. You have no idea how long this ramble has taken me and not sure if it makes any sense.

Have a lovely holiday Alan and don't fall in the water. Let us know how you are when you get back.

Janner, behave yourself and stop picking on our wonderful Government! Will say no more on that subject.

Julie, hope you found the info you were looking for.

Back to the sofa to wipe the dribble from my mouth so take care everyone

Lyn

Hi Lyn

You sound like me on a good day, roll on surgery tomorrow. I was on Gabapentin but ended up on max dose 3600 mgs a day and it just wasn't working. I am now on Amitriptyline and it's much better for the nerve pain also helps sleep but no real side effects apart from dry mouth. I also take Co-codamol and Diazepam. When I had my Atos medical I think the Doctor might have thought I came from a differant planet but as you say who cares. As you say who needs illegal drugs when you suffer with this condition.

Hope you come off your high soon

Regards Tony

Hi there, It's me again and just remembered what I originally wanted to say!

Janner

I tried physio for months but all it did was make my pain worse. Have you tried it before? The Physiotherapist tried to manipulate my neck into positions impossible to get to. I came home crippled with pain and eventually was discharged as they claimed they could do no more for me? They also have varying opinions. One would give me exercises to do and tell me to work through the pain. The next week I would be told that if it hurts, don't do it? Pretty useless altogether.

Tony

I was originally on amitriptyline but it made my dizzyness worse and never helped with the nerve pain. I find the gabapentin a lot better and am also on the higher dose. Will have to deal with the side effects and stay high on diazepam. At least I stopped drooling (for now). Can't wait for the Morons, sorry DWP Doctors, to assess me. Hope they can cope with the drool and slurred speech. What a larf.

Take care

Lyn

Hello everyone: Haven't gone yet, going tomorrow at 8am - cant wait to get to Norfolk, this is my favourite place on Earth - Fishing from my holiday garden, no cars, hardly any people - No thoughts of the DWP or Tribunal Appeal, I've got fields on one side, and the river on the other.

Great Yarmouth is just down the road - so we've got the seaside as well.

What more could anybody ask for?

Regarding Amitriptyline, I took this drug several years ago but soon came off it, because it got me so \"high \" that one day when I was driving I couldn't careless if I crashed the car!!!! This drug is extremely dangerous for some people.

One woman wrote that she was unable to walk for years but when she took this drug she started to run!!!! These are probably the people that the DWP like to film!! They know that the doctors are drugging us all up so that we can perform tasks that we would normally find impossible - and when we tell the DWP that we've taken drugs to help with the pain - they ignore it and tell us that we're \"swinging the lead\"

When you come to think about it - we're all drug addicts!! We complain about the younger generation taking drugs but we're at it as well - but we're legal.

Regarding Physio: This is totally useless, it makes the condition worse - I personally find the more active I am the more the pain starts to generate through my body - and the pain could generate anywhere.

Last night in bed my shoulder started to shake I couldn't stop it, so I had to get out of bed and have a cup of tea.

It drives my partner mad but I cant help it.

Right that's it - I'm going on holiday now - well tomorrow.There's some fun and fish that I need to catch. Speak to you all soon. Sod the DWP!!!

Alan

hi everyone, i am pleased you all still have a sense of humour through all this its good to see, its a pity cs is not a contagious disease as you could sit in dwp offices and let them have a taste of it, i think these medicals should be done overnight in a hospital ward and observed with a hidden camera with the dwp sitting and watching through the other end to see the true problems you all go through, as my opinion is that anyone can ooh and are through the day pretending to be in pain just to get benefits, yet through the night when you do manage to dose off and you are lying in sheer agony oohing and arghing swearing and cursing and dont even know your doing it should say it all, but instead you just need to say you are a complete waste of space an alcholic or a drug addict{ illegal one of course} and that should do it, my hubby used to do a lot of weigh training body building and his motto was no pain no gain, years ago he would practically crawl to the gym in agony and still train, yet this is nothing to the pain this is causing now, he spent years refusing tablets of the doctor untill about a year ago since then the gp just keeps upping the dose and adding more for the last 6 mth hes been taking zormorph which is a slow release morphine amytriptline diclofenic and co codamol with diazepam and oramorph which is a fast acting morphine for what they call breakthrough pain, whenever he needs it, these drugs should prove that the patient is in severe pain yet dwp still fail to see it, so should we now try to sue the gp's for prescribing and let dwp argue in court with the gp's saying that they dont need it, sorry for my rant just that hes had a rough few days and i feel helpless that i cant do more the only thing i can do is fight dwp take care everyone julie

Hi All,

Just a quickie before I nod off.

Tony, the doc was right you are from a different planet than him in fact we all are, he is from planet ATOS.

I think I would rather forget physio but I could do with an elbow crutch to make walking a bit easier, I can't really afford to buy one. I will need to have one with a particular hand grip owing to the pains in my hands and wrists. Pain and dizzyness tends to make me stumble to the right but it is almost impossible to grip anything in my right hand since the carpal tunnel op, plus my right hand is very swollen.

The best way our \"wonderful\" government can save money is to stop picking on us disabled and wasting millions on Atos docs and tribunals.

Enjoy your holiday Alan.

Cheers,

Janner.

Hi Janner

Have you considered a referral to an Occupational Therapist? You can get help from them with regards to Aids to help with everyday living and they won't rip your head off your shoulders while 'making you better' like the Physios will! I also fall to the right and wondered why I never fall to the left? Presume it is to do with the side of the brain which is affected from lack of blood flow due to the fabulous Stenosis? Please feel free to correct me if I'm wrong!!

With regard to the Planet ATOS Doctors, the Disability Rights told me that DLA is based on what you can do for yourself and not on the amount of pain suffered! So, you can writhe in agony all night but, if you can get up in the night to take your own painkillers and can get yourself back into bed, you won't qualify? Also, they don't base a decision on the amount of painkillers prescribed as these are designed to help you cope. So if you can walk after taking painkillers, then you can 'walk', so again you won't qualify. Also if you have various Aids to assist you with everyday living and help you do certain household tasks, you won't qualify because you can do things like peel a potato etc? Tell them that Aids don't help as you have problems using them due to pain in hands etc.

On the other hand, DLA is based on the help you need and not the help you get? So, for instance, if you can't get your own painkillers and there is nobody to get them for you, you can lie in bed screaming in pain and you might get a lower payment! I am not sure how money would help in that situation but there you go!

You will only qualify if you cannot look after yourself regardless of the amount of drugs you are on. If you can walk 50 metres after taking painkillers, you won't qualify? You need to put on your form that even after painkillers, you cannot walk that distance without extreme pain and having to stop. Best thing to put, if it's true of course, that you avoid going out as you cannot manage to walk more than a few paces and cannot stop and sit down in the street. If you have to sit on the pavement, you can't get yourself up without help from another person, that's if you can get down without falling down? State the embarrassment this causes you as people stop and stare if you are sitting on the pavement in the street or shopping area and tell them you get anxious about going out due to extreme pain and inability to cope and make sure this is on your medical records. The main key to applying is stating the help you NEED from ANOTHER PERSON!!!!

I've had a lot of advice and support from the Disability Rights Centre and they've been wonderful and very informative. Check the internet and see if you have something similar in your area and they can help you with the crazy world of Disability Benefits and Tribunals. Much better than Welfare Rights as they specialise in this one area.

Sorry for my ramblings and most of you already know how the system is but thought I would put my new findings on here for anyone who is just starting out on the incredible world of DLA claims. Did you know that DLA don't always check a new claim to see if you have claimed previously and were turned down? If your form goes in properly completed and contains the correct criteria to qualify, they write to your GP and if his/her report backs up your form then you will qualify and receive payment without the further ridiculous hoop jumping. Claims are refused due to forms not containing qualifying criteria?

Hope this helps somebody else

Take care all

Lyn

Hi Lynb,

Thanks for the advice. I will see if my GP can arrange for me to see an occupational therapist.

As for DLA, I am reluctant to try to claim again. My last claim was turned down because, despite my problems, they said that as I had managed without any help I could continue to do so. I have tried peeling spuds but simply cannot do it. I have not eaten any cooked fresh meat or veg since I had christmas dinner at a friends place. I am fed up with living out of packets and tins. Managing on my own is a struggle and is getting worse, I don't have the type of friends who I could ask for help on a regular basis. All my friends and close family are older than me and have their own lives to lead. It's how the saying goes, \"a friend in need is a pain in the arse\". If I had someone to help then claiming DLA should be a doddle.

Using a hoover is very painful. I have to mop my kitchen and bathroom floor just before going out as I cannot squeeze the mop out and therefore leave the floors rather wet. By the time I get home they are dry.

I notice that when claiming DLA they are only concerned about whether or not you can wash, dress, feed yourself and use the toilet. They do not care whether or not you can keep your home clean, do your laundry or get to the shops to buy food. Yet these things are essential. I suppose they assume that you can pay someone to do it all for you, yet how are you supposed to afford to pay for help without the DLA. You can't get DLA unless you have someone to help, but, you can't afford someone to help unless you get DLA. Hows that for a catch 22. The system is definately biased against the disabled who are on their own.

Well that's my moan for today.

Cheers,

Janner.

Hi Janner

Have you spoken to your local council about Welfare Rights? Most councils have a Department which deals with this and they can help you make a claim! Also, as I said, a Disability Rights Department have someone to help you complete your claim form. Check the internet for someone in your area and contact them.

I will wait to see what they make of my claim form and whether I get anything and if I do then we can exchange e-mail addresses and I will go through my claim form with you, they left me a copy, and help you fill a new one in. I have loads of details about what you need to put on your form and can pass this info on if it helps.

Make sure you claim again as this is your right and as we all know, the Government is changing the benefit system so we need to get our claims sorted very soon.

Keep your chin up and lets hope my new claim has some success so I can help you out if need be. In the meantime, get some help locally and keep pressing them. I think we should all start a campaign and lobby the Government with regards to Disability Benefits and let them know the way we suffer and how we can't get the help we need.

Take care and get a claim in!

Lyn