I Don’t Usually Do This…..BUT….

It’s one that impacts directly on me, friends and a fair few of my followers on here.

PLEASE…..sign this petition. Please share it on other social media.
At the very least you will be raising awareness and helping people that way.
At best….the petition could bring about some much needed change.

Edited to add Unfortunately you have to be living in the UK or a citizen of the UK to sign it

https://submissions.epetitions.direct.gov.uk/petitions/71070

Thank you xx

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This entry was posted in Fibromyalgia related stuff and tagged , , , , , , , . Bookmark the permalink.

24 Responses to I Don’t Usually Do This…..BUT….

  1. Vicky Louise says:

    Signed and shared lovey 🙂 xx

    Liked by 1 person

  2. Tried to sign but it says I must be a British citizen or live in the UK. Sorry.

    Liked by 1 person

  3. vpark3 says:

    Signed and shared xx

    Liked by 1 person

  4. CC says:

    Great petition….Have to be British citizen or UK resident :/ xxx -CC

    Liked by 1 person

  5. beverley says:

    I am sure that Fibromyalgia is already covered by the disability act in the UK any way, as it was what was used when i had to give up work due to ill health.

    Liked by 1 person

    • Moongazer says:

      It is an accepted medical reason for being unable to work, but people are being made to jump through hoops repeatedly to get their benefits. I have an indefinite award of DLA (just the personal care part) but I still have to fill in a massive form annually for my other benefits. And as for the new PIP – its ridiculous. One friend who has ME very badly to the point she is rarely able to leave the house and can only do so if she is accompanied, can no longer stand to cook etc waited 8 months for her decision and was awarded a measly £20.
      The point of the petition is for the powers that be to take FM and ME as seriously as other illnesses that arent called into question.

      Like

      • beverley says:

        I agree they need to take it more seriously. But no one should have the right to benefits just because they have a certain condition, but on how that condition effects them every day. I also think that those that can work with Fibro should be allowed disability payments. I worked for 8 years with worsening symptoms, but while i was at work i never even thought about claiming disability payments. I also agree that some of the benefit office decisions are crazy, totally crazy. I get high rate mobility and low rate care and ESA because i do not have a person who lives with me has my partner. More and more people are being diagnosed with FMS and CFS/ME then ever before but the question that needs to be asked, is why? My mother was diagnosed with it over 30 years ago, then it was called non-nodular rheumatoid arthritis, so is there a genetic connection or did i learn my mother’s way of living and that is why i have it. I have 4 siblings, and 4 half siblings and none of them have it, does that mean they don’t have it or they haven’t been diagnosed with it?? Those that are physically unable, that would include me most days, should be able to get the right benefits quicker and easier, but it shouldn’t be automatic. I have diagnosed with both FMS and CFS. They are still relatively unknown conditions, and i do worry about my own children, but living right does help and body stress, including this cold makes it worse.

        Like

        • Moongazer says:

          Yeah, when I was working I didnt claim either.
          My mum had it for 25 years. I def think there could well be a genetic component.
          I discussed the issue of CFS and was told its not a separate condition but part of FM.
          I was also told not to contest not having mobility by the dss even tho I cant even walk to the bus stop.
          I agree no-one should have automatic entitlement. If I had carried on working I wouldnt have claimed.
          BUT there needs to be better acceptance and official recognition of just how debilitating FM and ME can be. Whether the medical profession can be cohesive is just part of the problem.
          I have heard people are being diagnosed without the pressure point test. I would question if that is even a valid diagnosis.

          Like

          • beverley says:

            Those suffering from FM are chronically fatigued as their minds don’t sleep. However CFS is caused by an infection, which causes spots on the brain, which can be seen by MRI.
            They needs to be a standardised test for FM, which is used for by every clinician for patient they think has the condition, but you are right this doesn’t always happen, although it did in my case. I think my GPs wanted to ignore all the pain i was experiencing through the years and would have gone on doing so if i hadn’t fallen down my house stairs caused a problem with my knee, was seen by a orthopaedic surgeon and even after that was sorted i was in terrible pain everywhere and it was on his recommendation that i was seen by a Rheumatologist and after only a brief conversation and the points test she told me what i had.
            But that said, without diagnosis i would still be at work, earning twice as much as what i get now.
            The other side of not doing the test is that the patient could have something else entirely that could be treated successfully.

            Liked by 1 person

          • Moongazer says:

            Here we have a perfect example of the confusions that exist. The chronic fatigue aspect of FM is not because the mind doesnt sleep. Its because we physically do not enter the restorative level of the sleep cycle when the body repairs. More recent research indicates that our cells also burn the ‘wrong’ fuel (sugar instead of oxygen, if i remember correctly) and that that is due to a process that results from us having too many venules. I posted the research a few months ago. Its all a very complex inter-linking of malfunctions.
            Now, I dont have ME but I know it is often misdiagnosed as FM and vice versa and I have seen it both differentiated from CFS and used interchangeably with the term CFS, which is probably why ME was recently re-named.
            But it was this continual referencing of CFS (not ME) as separate from FM that led me to discuss it with my dr.
            I had the tender point test done too. It used to be the definitive assessment for FM. But I know of people who have been diagnosed without it.
            People I know with ME have a lot more going on – such as thyroid, parathyroid and problems with their nervous system than people with Chronic fatigue (whether or not with FM too).
            Ye gods its complicated!!! Especially as the most recent research I read implies FM is also due to the virus that causes Glandular fever, which both me and my mum had but my siblings didnt.
            My own situation is that not only do I have FM but I have parasthesia due to damaged nerves in my spine. My friend with ME has similar issues in practical terms but from a totally different cause. But I bet mine get taken more seriously because of the cause.
            Cor blimey, I’m worn out now! LOL

            Like

          • beverley says:

            No, that’s what i meant by the mind not sleeping properly. I have found since i started meditating a year ago i do get the odd night of really good sleep.
            I have never had a virus so that doesn’t work for me. Although i do think it is a central nervous system overload. The CNS cannot cope with all the incoming signals it is getting, shuts down for a micro micro second and when it reboots it never works properly again. But i do know of a couple of people who have managed to work around this problem and now have ‘normal’ if not quieter lives. So you may find that FM is due to the damaged nerves in your spine???
            I had to look up parasthesia but i get that all the time down my left side, but it is partly due to the migraines i have and was one of the first symptoms that i had bigger problems,

            Like

          • Moongazer says:

            Unfortunately it was the other way around. I went back to work too soon after a flare up, the muscles in and around my hip area were still rock solid and as I leaned into my car to get my bag from the passenger seat, I felt my back ‘go’. The combination of the movement against the tightness caused a slipped disc. A badly slipped disc. But it was 18 months (4 of those bedbound unable to even sit or stand without help, let alone walk) before they found it. The longest I could sit at one point was 13 seconds. It was either lie on my side or pace. I had over growths of bone that exaccerbated the problem. Then another 18 mths waiting for the surgery. The surgeon even admitted the nerve was harder to free than he expected. Thats where my parasthesia comes from – the damaged nerves. I ‘lose’ where my foot is. Although thats an improvement on having to drag my leg by swinging my hip forward when i tried to walk.
            The outer side of my leg and last 3 toes are numb. And if I stretch up to reach something on a shelf, I lose awareness of my legs totally, its like they are just not there.
            But that is different to the numbness I get from my hemiplegic migraine (touch wood not had one since I stopped taking cymbalta). Its also different to the numbness and tingling I get from carpal tunnel. Those arent permenant whereas in my legs it is.
            The dr at the pain clinic talked about using lyrica to ‘reboot’ my nervous system but it didnt work and the side effects were nasty.
            I cant meditate.
            I do feel that there is a connection between prolongued stress (and trauma) and FM but *how* that manifests into the actual physical changes such as the structures in our skin, I dont know. I suspect the medical profession wont know in my lifetime either *sigh*

            Like

          • beverley says:

            can i email you?

            Like

          • Moongazer says:

            Oh gods yes!! I miss my income from working too! And lots of other things!

            Liked by 1 person

        • Moongazer says:

          DLA (I dont know about PIP) was claimable by people who are employed as the point of it was to help you with expenses you wouldnt have if able bodied. BUT I bet you that if we had claimed with FM when we worked we would have been declined simply because we were able to work with it.

          Liked by 2 people

      • pd says:

        you mean DLA was replaced by PIP and just £20pw awarded !, so person worse off ?. How can they leave someone worse off than before ?

        Liked by 1 person

        • Moongazer says:

          No, Paul, she hadn’t applied for dla even though she was entitled. It was a totally fresh claim. But considering her level of disability she would have got more in the days of dla and been awarded both mobility and personal care.

          Like

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