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

Posted , 14 users are following.

SteV3
SteV3

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

41 Replies

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  • bronwyn97278
    bronwyn97278 SteV3

    Posted

    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
    • kaz_40
      kaz_40 bronwyn97278

      Posted

      morning Bronwyn How are you hope your not in too much pain. Fibromyalgia needs to be put out their as many people have never heard of it. drs specialists nurses the wider public need to know about fibro and how it affect peoples lives and the different symptoms it throws at us. Its not a widely understood condition more needs to be to done in it being researched and finding a cure for it.Im not sure a cure will be found in my life time.take care gentle hug
  • shelagh6
    shelagh6 SteV3

    Posted

    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

    • kaz_40
      kaz_40 shelagh6

      Posted

      Hi shelagh Im with you so glad its gone cooler, the heat was to much for me, hope you have a good week and your not in too much pain. take care gentle hugs
    • SteV3
      SteV3 shelagh6

      Posted

      Hi Shelagh,

      I actually wrote this earlier, but a virus changed my DNS settings so it would not send, it looked like someone was interrupting my internet on this machine. Anyway, this is what I originally wrote earlier today, before I was interrupted

      =================================================

      Many councils still have a Welfare Rights Department, do not get this confused with Welfare Reform or Welfare Reform Funds.

      Welfare Rights will help you in many ways, if you have one in your area, they are rated better than CAB in many ways, due to the way both are funded.

      Welfare Reform Funding is a totally different area, this is where the current government is planning to hit people hard during this week’s budget. The public is fighting hard to overturn many proposals already put forward by our government. There are many websites that you can sign to overturn the proposed changes during the budget this week.

      You may think what is the point of signing an online vote against proposals. Well, one was overturned last week by 38degrees - they had over 1/2 million public votes and donations to place advertising in papers which would counteract a forthcoming proposal, last week this was Child Tax Credit. Now, this is why back-benchers and other MP's did not back George Osbourne's Child Tax Credit proposal. There are many backbenchers that do not agree with proposals, and by placing full page advertising in many newspapers does cost money, it also as a positive impact on Parliament.

      Welfare Reform Funds are available, but are dependent on your local council. The Government may state one scheme, but many councils vary in the way these funds are made available to the public. If you are in receipt of ESA within the support group, normally you are not entitled to this funding.

      Cooler day Shelagh, have you seen the weather forecast!! We are nowhere near the hottest day or peak yet - they have forecast temperatures higher than we had in 2003!! I wish I could have a great day, Shelagh - even with my wife helping me it takes about 30-45 minutes just to get out of bed!! I have a hospital bed which my doctor got me via the District Nurses, yes it's one with all the remote control options. In theory it should be easy to bring the back up, so I am the sitting position, but with me, my muscles seize up overnight and on the first night I got lodged between the bed and the wall, so they fitted bedside rails so I could not slide sideways! I have to phone the district nurses again today, to attach a drop-rail so my legs stop falling out sideways! My wife and I, always slept in a double bed, these days that is just impossible - it got to the point where I had my son and wife actually pulling me up into the sitting position, but even that was difficult for my wife, who is quite short, and I stand over 6'1" - hence I tower above everyone in the house. Once I am in the sitting position, time for compression stockings to slow down swelling in legs, ankles and feet - putting on these really hurt, because even though my legs have been elevated all night, a slight touch and I am in agony.

      I have learnt one thing, no day is ever the same... some are worse than others. The worst is going to sleep at night then waking up in hospital, I have no recollection of how even got there, but it's mostly down to Functional Episodes! Over the years I have got used to it, I have no choice really.

      Anyway, have a nice day, cooler here today - but it’s raining! Typical English weather. lol

      Regards,

      Les.

    • shelagh6
      shelagh6 SteV3

      Posted

      Thanks Les, you have reminded me that there are a lot of people worse than me, sometimes I need a reminder. I used to teach riding for the disabled that was an excellent reminder but these days I don't see anybody. I've used welfare rights before they are excellent and we do still have one in this area. I am helping someone through the maze at the minute, I'm trying to get her to welfare rights but she is despondent after she was turned down for PIP for her son with Down's syndrome. Another who is in a worse position than me!

      Shelagh x

  • Bee70
    Bee70 SteV3

    Posted

    Hi Les

    Totally agree and thanks for sharing.

    Have a good day....wink x

  • Angel51
    Angel51 SteV3

    Posted

    Hi Les

    Thanks for your informative post. I was recently awarded HRMobility and MRCare after filling in my DLA renewal, (previously getting LRCare alone) after 2 yrs. I am still fighting for the Mobility component for those 2 yrs and its given me no end of anxiety and depression, causing  heightened/increased FM symptoms, exasperation and dispare.

    I was refused any benefit at all, initially but I ploughed on because of reading articles like the ones you've referred to and others that I've read online about our illness and its effects and the affects I was suffering.

    I know first hand how hard it is but would say to those on here, thinking of applying or appealing, take heart and take all the help you can get.

    I will update you in regard to my ongoing appeal.

    So thank you for the encouraging info and advice.... be happy and well, Les.

    Angie

    • SteV3
      SteV3 Angel51

      Posted

      Hi Angie,

      You're welcome, I like to help people and because what I have been through in my life, I have picked up a lot on laws and acts.

      I do not have Fibromyalgia myself - but I spend much time in and out of hospitals, visiting the doctors, consultants, having injections, 30+ tablets a day, etc Yet, you can guarantee if you are feeing low, that there is always people worse off than yourself - I did on here, with the same condition as me, but not the same additional disorders which complicates my case even more.

      A split second accident, ended up with me having my head twitching and pulling constantly to the left and down. My own GP at the time, even checked my arms because he thought I had taken illegal drugs, cheeky sod, never touched drugs (illegal ones in my life!). He said I do not want to prescribe you anything, until we know what is causing it. Well, I was passed around the country in different hospitals, keeping me away from other patients, because no one knew what was wrong with me. Then I got transferred to The Queen's Hospital in London, many tests were done. I then met a Neurology Professor Dr. David Marsden from the USA and his team, 18 months later I was diagnosed with Focal Segmental Dystonia, then Torsion Dystonia, then Cervical Dystonia (the neck, not pelvis as most people think!) then last year it was finally changed to Generalised Dystonia, in other words all limbs affected. There is no cure, well I say that our government state theres a high recovery rate, when I looked in to it myself and in the BMJ, the success rate is only 5%!! Says it all about our Government!! I have even met one guy that had the brain operation, he was much worse after having it done, and was paid a high compensation for incompetence.

      I thought having Dystonia was bad, but because it is nerve disorder.

      I got Epilepsy, Functional Episodes and IBS!!

      In March this year after 7 years in remission, I was finally given the all clear from cancer.

      And if all that wasn't enough I got rushed in to hospital with horrific stomach pain, at first doctors thought it was my appendix. But it was too low down, and they said it seems to be coming from the intestine. Then they said we need to have a look inside you, that meant

      surgery. I was in surgery for over 6 hours, eventually I come around but was in so much pain, I was on Morphine and had an Epidural in my back. What had happened was over 50cm of my intestine had turned gangrene, so basically I was dying from the inside out, in medical terms it is called a 'Small intestinal ischemia and infarction'. Two days passed and instead of getting better I became worse, the pains become worse and then I could not keep nothing down not even medication, and I started being nauseous with loads of bile. By this time, I was rushed back in to surgery, I didn't even have time to sign the consent form. The surgeon phoned my wife asking if she would give her permission for them to operate ASAP, it is an emergency that we need your husband operated on, and he is unable to sign the form himself. Of course she said 'Yes' to the surgeon and said she would sign it, as soon as she got to the hospital. What happened to me was part of the gangrene intestine had touched my liver, which had also started to die off, this was touching more of the intestine which was cut apart again and removed, the liver grows back anyway (good job in my case!). I spent nearly a month in hospital with that operation being done, and seen District Nurses every few days to clean the dressing. It took me over 10 months to recover properly.

      That basically, is what is wrong with me, majority of the time spent in a wheelchair. The Neurophysiotherapy is working slowly, I can manage a few steps on a good day.

      Many people say why don't you apply for a holiday... well, if it was not far away, and had bidets or bio-bidets I would be fine. But I'm nowhere near a coiastal resort...lol

      We have to take everyday as a new day... hoping, something new will happen, well we can dream I guess! lol

      Regards,

      Les.

    • shelagh6
      shelagh6 SteV3

      Posted

      Just reading your bit about holidays, there are a lot of places specifically for disabled holidays, we visited one in Grantown on Spey, it was nice with all the facilities, hospital beds, Bidets, lifts etc, it was a hotel, wouldn't be my thing but it was 'nice'. Now at the other end of the scale there are bungalows in our village which have all the facilities mentioned above.
    • kaz_40
      kaz_40 shelagh6

      Posted

      Hi shelagh what do I google when looking for holida that is specifically for disabled holidays I didnt know their were places. How are you today hope your not in too pain take care gentle hug
    • SteV3
      SteV3 kaz_40

      Posted

      I do not know if you know this but if you are on either the top mobility rate of PIP or DLA, and have a vehicle on the Motability Scheme you can claim a voucher for 50% off any holiday booked with Haven Holidays.

      Many people do not know what entitles them to what, which is a shame really - again it is down to awareness, and the lack of, which fails so many disabled people.

    • kaz_40
      kaz_40 SteV3

      Posted

      Thank you les for letting me know much appreciated. I didnt know you could do that their certainly is a lack of awareness anout it. many thanks kaz
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