Awareness: FIBROMYALGIA is more than a word and Bigger then a Diagnosis!

Bones, joints and muscles
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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.

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i totally agree with you hun xx

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Hi Les. Thank you for this post. I get PIP but have been refused ESA even on appeal. The appeal can be anything up to 3 months and they expect you to remember what you were like 6 months previous when you filled the initial forms out. This can be so hard with the fibro fog. It can also be quite intimidating to attend the appeal as you have to sit in front of 3 people who all ask you questions, and yo uh have to be quick with the answers as you know there are at least another 6 people sat outside waiting for there turn. Take care

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Hi Les, I've had fibro for more than twenty years, I get DLA now but didn't know anything about ESA until this weekend. I gave up work last year,mi just couldn't cope any more but left rather than going sick, I thought it was my problem! I can't see my dr till the 17th, I would be seen same day if I was ill, I'm going to ask for a sick note. My dr is excellent so I don't think he would refuse, the Rheumatoligist would give me one but I don't know when I will see her again. 

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?

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Excellent, well written post, thanks.

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excellent post good information thank you 

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Hi Shelagh,

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.

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Hi Les more needs to be done where fibromyalgia is concerned. Drs hospital DWP need educating on fibro their isnt the awareness as their is with many other conditions. Their is no understand where fibro is concerned wih many drs specialists employers . It needs to be put out their more I think we need our MPS help like reading MP did for his constituants and local the local fibromyalgia support group in Reading. regards Kaz

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Thank you very much Les, I'm sure there are more of my Facebook friends who haven't "admitted " it yet. I used to work for a charity who helped people in many ways one being filling in forms on their behalf, it was many years ago but I still know the principals. I am expecting the forms for me to change from DLA to PIP at some point, not too sure I'll be able to do it with the fibro fog but I'll give it a go.

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Jane,

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.

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Hi les

Sorry I'm new to this.what is pip and dla?

Thanks Mace

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Awareness of Fibromyalgia

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.

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Hi Shelagh Im wondering if you would be better off having help from the CAB to help fill in the form. I think it would be of reat help to you if they helped you to fill it in especially with you having the dreaded fibro fog. My husband filled mine in for me, Im no good with forms but also the fibro fog was really bad. so I let him fill it in I just signed it. it took us over an hour to fill it in as we took our time and kept reading the referance pages. the form we found wasnt as bad as people had made out to us said it was. it took 6 months from start to finish to get PIP.take care gentle hug

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Hi Mace,

Have a look at my article here:

Advice on Applying for DLA (Disability Living Allowance)

https://patient.info/forums/discuss/advice-on-applying-for-dla-disability-living-allowance--313511

PIP is the new allowance basically replacing DLA, both are listed if you type in Google DLA PIP Allowances UK

Regards,

Les.

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Hi Kaz,

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.

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Hi Neil,

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.

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Hi Neil,

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.

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Hi Cherl,

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.

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I think it needs to be made more known "Worldwide"......as even as we have said, our family and friends Don't Really understand.....and if we could all only find out ""what causes this disease"????   There is so much research into cancers (and this is good), but I am really wanting to know, why/what caused me to become this way?   They tell us lots of reasons....top of the list being stress, and maybe so, but the generations before us had Stress....wars etc, and I don't remember my father having Fibro/CFS.....There has to be something in today's world that is making us this way, or am I missing something?..............Bron

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When we lived near Lancaster there was a Welfare Rights department , part of the council. I believe a few councils have them, they are experts on every aspect of benefits whether claiming or appealing. I don't think we have one in Cumbria there excuse would be the normal, the county is to sparsely populated. It is worth checking with council if they have one in your area, because it's all they do they are amazing with forms.

take care everybody it's cooler today, can't believe I'm celebrating it being chilly! Hope you all have a great day, huge thank you to Les, hope your day is great day too x