Awareness: FIBROMYALGIA is more than a word and Bigger then a Diagnosis!
Posted , 14 users are following.
It is about time we made people with Fibromyalgia more aware across the UK, many doctors still do not know the symptoms, or unsure!
Applying for DLA//PIP or even ESA?
When applying for DLA or PIP, make sure you make references, to either this post itself (because this explains it in a quick summary, or direct them to the link in this post, under the list of symptoms.
The time to get a second opinion to diagnose you correctly!
If you think your doctor is not recognizing the symptoms correctly, then give him the reasons below to refer you to see a rheumatologist in hospital, you can also ask to see a Neurologist as well, but a rheumatologist will know more.
Always get a second opinion if you experience any of the words in the picture within this message (Click it to enlarge to View!).
Some people have even been told by ATOS there is no such disease, a doctor just says this word if they do not know what is wrong with you! (This actually happened to one claimant).
Ignore anyone that states Fibromyalgia does not exist!
Many times people are mis-diagnosed, because this condition is quite new in medical terms. I cannot stress enough, but all of the following words are very much associated with Fibromyalgia Syndrome and it does exist, and causes many problems. With PIP and DLA, you should be on one of these, considering the prognosis of this dreadful disease. It is listed in the British Medical Journal and goes in depth, so if you are fighting a case for PIP/DLA or ESA, you can state this, and it is recognized by the British Government Medical Publications.
Symptoms:
Digestive Problems
IBS (Irritable Bowel Syndrome)
Muscle Weakness
TMJ
Depression
Chronic Pain
Chronic Fatique
Nerve Pain
Tension
Migranes
Anxiety
Stress
Muscle Spasms
RLS
Brain Fog
Dizziness
Stiffness
Insomnia
Cognitive
Tender Points
Trigger Points
References on this website - Patient Info - Fibromyalgia
https://patient.info/health/fibromyalgia-leaflet
Remember, if anyone states otherwise, they are wrong and should be sent to the aforementioned Link to our Leaflet.
I hope this helps you with a better understanding of Fibromyalgia, and that it cannot be described in a few words, like the DWP expects you to do!
Regards,
Les.
5 likes, 41 replies
cherl450 SteV3
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SteV3 cherl450
Posted
You're more than welcome, hopefully it will help spread the word, you can copy and paste ther entire document, as long as the patient.info link is kept in place, for referencing updates in the future.
Regards,
Les.
janet26165 SteV3
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SteV3 janet26165
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A few pointers with PIP or DLA claims... These will help you, with these situations.
1. NEVER fill out the forms online, these are specially designed so you cannot add additional comment in small places, where it would initially count towards your descriptor points. They were altered by the DWP, solely for this purpose.
2. Attending Appeals can be very daunting to many people, and in many cases, is the main reason they lose their Award. The best thing to do is photocopy your entire PIP/DLA or ESA Award Application. This serves 2 purposes:
(A) You have a full copy if they state they have not seen it, or it is lost. This is a well known "dirty trick" the DWP will try, but there are many others.
(B) With your copy you would be able to write a summary for an Appeal if needed, basically a bulleted list of what you wrote down.
3. Make sure when you start filling in the form, someone is with you (possibly someone that knows you well) this will help you, because with as you know with Fibromyalgia, forgetfulness is a horrible thing to have when you are trying to complete an application form.
4. If you can, record the assessment - this was asked by Capita, but th DWP refused it. ATOS was against it from the start, which is why they are so down on people. If they know, they get can away with it they will make changes between what were asked in your assessment and the DWP Award Notice Letter. However, with a small digital recorder you have your assessment on your side, hence they should coincide with one another. If not, your can state that ATOS has breached the conditions with the DWP, and you have the assessment recorded yet your letter does not coincide with it at all.
You do not have to be quick with the Appeal, it does state on your initial Award Letter you have 28 days to Appeal, this is not entirely true. You can withold them for a further 14 days, because you can say you are making your case. They do not like claimants doing this, but by Government Legislation they must abide by their Laws.
If you feel nauseous, tell them - this will allow you more time, or say you feel depressed, or anything to hold up your case. This will be noted down and in many cases it goes in your favour.
Regards,
Les.
shelagh6 SteV3
Posted
After putting something on Facebook about how bad last night was with my fibro I've been inundated with friends asking for help, I hope you don't mind, as well as my experience I've copied and pasted your excellent piece to them in private messages. Do you think it is worth posting on Facebook?
SteV3 shelagh6
Posted
You can post the article wherever you wish, I am writing articles for various Benefits and Allowances for this site, basically places which will help you wich filling in PIP/DLA & ESA forms. There are quite a few references and should be up later this week, Pinned on the Benefits and Allowances section.
There are other articles I have wrote regarding Disability Grants and Aids and how to apply for such items, these vary from small items such as a walk aid right up to stair lifts, indoor and outdoor aids within the Government Legislations Disability Grant Limits of £25,000 per per property.
I can actually post that one on here as well, so you have both.
But, yes you're more than welcome to post any of my posts, the image in this one did come from Facebook, I do not take the ownership of that image, because it was not my own work.
The way I see it, is people with Fibromyalgia, should have instant access to PIP/DLA or ESA, but they don't, which I class as unfair - there are some progressive illnesses that automatically grant PIP at High Rates both descriptors, and ESA with no face-to-face interview, it is a shame Fibromyalgia is not in this field yet, considering what and how it affects people.
There are many people walking around these days and do not even know they are classed as disabled. When I say that to many people, they ask how can that be, surely you would know, the fact is, awareness is not pointed out in many cases, so people think they have a minor problem, but it could be the start of something much bigger!
I, personally do not suffer from Fibromyalgia, I have enough problems with numerous illnesses of my own, I'm hoping mentally, that I'm not too much affected because I have to take Class "A" Medication plus much more, and 6 BoTox injections every 10 weeks! I certainly would not opt for BoTox for vanity purposes they hurt, like bee stings!!
Regards,
Les.
kaz_40 SteV3
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shelagh6 SteV3
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SteV3 shelagh6
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This is how bad it is covered by the BMJ and our Government.
1. The BMJ (British Medical Journal) has a 17 page indepth guide for Doctors, Consultants, etc.
2. The Government Medical Book for Staff is just 5 pages, and they just cover parts of Fibromyalgia. This is what the DWP goes by, a PDF file of 5 pages, that basically covers just back pain! So, really nothing basically, thats how bad it is.
Regards,
Les.
kaz_40 shelagh6
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SteV3 kaz_40
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You done well, there.
Many people fail on the Award Application form, hence never even reach the assessment. Of course, to the DWP this is straight forward win and shut case.
When my wife and I filled mine in, it was huge and this was applying for upgrading the Middle Rate Care to High Rate Care.
Most people would not even try it, but because of the small boxes for text and the little tick boxes!! My wife spent about 3 to 4 days, just for the upgrade and filling it in. Detailing everything about me, medications, consultants, dates, emergencies, all outpatient appointment dates from a year, all dates of doctor appointments from the past year, all dates of seizures - and if a '999' call was made, BoTox Injection dates, etc. It is that bad, I have to keep all appointments on my computer and it sync's to my iPad which I have with me most times in a bag, which I take everywhere.
What you have to think about is how, certain benefits and allowances give you access to other services and care. Your local council - Adult Care Services - Occupational Therapists and Reviews, these can give access to grants direct from the Occupational Team if the item or product is around £1,000 - However, if you need a "stair lift" around £5,000, or a "clos-o-mat" around £5,000-£7,000 (Bidet) then you will need it done on a DFG (Disability Funding Grant) this has a limit of £25,000 per property at current Government Legislation rates for DFG's. *This is subject to change in the forthcoming budget, but I will keep you updated on all changes.
CAB is okay, but you have to remember these people do not know your illness in detail, so it is better to take a person that knows you well, to fill it in correctly, and how the various disorders affect you personally, everyone is different, no one has the same stage of any condition, this you need to specify precisely. The more details you have and content the better, if you are under Specialized Consultants then do not missed these off, a Consultant Physiotherapist is not the same as a Consultant Neurophysiotherapist, they specialize in nerve/brain damage patients and are very thorough in how muscles affect others.
If you have swollen legs, ankles and feet, which when touched, are very tender - this can be down to reactions to medications or bad circulation. Remember, the slightest details will make a big difference on your application and don't forget, always use more paper if necessary. In my case, we used an additional 5 sheets for just a simple care update.
There have been a few noted cases where no face-to-face interview was done, this does happen but it is very rare and relies highly on the content of the Award Application.
Regards,
Les.
neilwaud1969 SteV3
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SteV3 neilwaud1969
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You're more than welcome, hopefully it will help spread the word, you can copy and paste ther entire document, as long as the patient.info link is kept in place, for referencing updates in the future.
Regards,
Les.
kaz_40 SteV3
Posted
SteV3 kaz_40
Posted
You're more than welcome, hopefully it will help spread the word, you can copy and paste ther entire document, as long as the patient.info link is kept in place, for referencing updates in the future.
Regards,
Les.