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TOPIC: Fibromyalgia

Fibromyalgia 23 Jan 2019 10:16 #13190

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Member TW35 and I were discussing this recently and I`d never looked much into `Fibro` as it`s called apart from a few web pages relating to what it was and overlooked much of it. But have taken the time to look specifically at the symptoms list people can `tick box` to compare with their own pain and fatigue. See here:
www.nhs.uk/conditions/fibromyalgia/symptoms/

I couldn`t believe that I actually HAVE many of those listed even though it never occurred to me before to link these with my neck problem and headaches. These are only part of my problems and when I read the NHS prognosis of symptoms, I can recognise many (but not all) of these being part of my pain too. Things like onset of fatigue that drains the energy and you feel too weak to do anything. Inflammation, forgetfulness, concentration problems, bowel problems, headaches (although these are related to my disc problems) and sensitivity to cigarette smoke particularly (just do not like it) sets my nerves flying.....feeling too hot or too cold, speech becoming a bit garbled even though I speak perfectly okay, I find that when I`m trying to explain something to a stranger my ability to manage that without spluttering through can be difficult and without feeling emotional sometimes. Something I never had problems with 20 years ago.

Just a few of the things subjected in that webpage. It`s very difficult though to imagine we have such a condition and even moreso, convincing our GP to allow us to see the specialists who test for it. Neurology etc....although I do have a connection to a pain management clinic so that could be an option for me. It just hasn`t materialised yet.

Feel free to join the conversation on this or any health concerns you may have that worry you or indeed, may actually mean you would qualify for PIP or even ESA.
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Fibromyalgia 23 Jan 2019 19:18 #13224

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audioboom.com/posts/7133376-fibromyalgia?fbclid=IwAR1JhhTYLdJcFCmQuXiPvxPgUOzyuBt-FTWb9hKcss0kL7N7EXyScpmJJTY Worth a listen COD
As you no i got diagnosed with Fibro and thought id had it well b4 getting the diagnosis. Fibro is weird that there is no spercific test its more of a case of ruling things out. To be honest being diagnosed has been little help to me as im no further forward in life. A new one on me is my backside is sore today probably too much sitting. Im having to sit on a pillow to help at the min. I'm lucky in some ways in that i manage at home as i do very little but i no in a work place ill be having to have more and more meds and no doubt break down as things that people take for granted will eventually grind me down. During a flare up mine can last for over a month b4 i get back to what i call normal pain. I try and do a bit of exercise and in the summer i was tearing on as as doing up to 10 mile on the push bike but most recently i had a small flair doing 10 min on the exercise bike. This is what i find most frustrating as there is often no rhyme or reason as to why things are hurting.
My memory is terrible and im not sure why that is. Could be fibro, meds or depression. www.myfibromyalgiadiet.com/2016/03/03/250-symptoms-of-fibromyalgia-and-common-co-existing-conditions/
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Fibromyalgia 23 Jan 2019 19:27 #13225

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I must admit I have never come across this condition, Sounds an awful Challenge;
And needless to say will fall Well outside the DWP "Tick Box" Mentality, ALL these decisions ref Health and Benefits Must/Should be done by Qualified Medical Experts, Not some Jumped up DWP office boy with No Knowledge or Understanding whatsoever. :angry:
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Fibromyalgia 24 Jan 2019 10:13 #13231

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TW35, many thanks for the links, I will have a look at those later on today. Getting diagnosed with something (anything) like chronic conditions can take a while because you have to go and see various clinicians, have tests done, backwards and forwards to your GP feeling like your hitting a brick wall most of the time and that alone can be really frustrating. I`ve only ever had ONE MRI scan done around 15 years ago on my neck area that showed small disc prolapses and some `wear & tear` which is their name for arthritis but they won`t actually say that. I have this `wear & tear` at my big toe aswell but my GP never refers to it as arthritis. I couldn`t walk properly for weeks a few years ago due to this becoming very swollen and painful and often have pain in my foot. Any blood test I`ve had done over the last few years has been `OK`.

The headaches I get are recognised and I have seen a pain consultant recently, but I think I have a ways to go yet before I get anything solid to report. My ESA award is based around standing & sitting and mobilising. I fit a couple of other descriptors too but have never been awarded points on those. This time around though I will be pushing for those to be recognised.

Paul, your absolutely correct that the NHS should be the deciding factor on these decisions based solely on GP knowledge and the evidence they give. Not some snap shop of a person`s ability to get to an assessment centre and be able to sit in a chair for 30 minutes. Totally ludicrous.
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Fibromyalgia 24 Jan 2019 11:50 #13233

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And just to add, if anyone does get found `fit for work` after an ESA Work Capability Assessment, goes through the usual Mandatory Reconsideration and then Appeals and still loses their case, this then applies once you make a claim for Universal Credit:

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If and when you have to make a new claim for UC, you will be asked on that application about your Heath or Disability when making your claim. Now what you input here could well trigger a work capability questionnaire again and then a work capability assessment. :whistle: So you may be thinking wait a minute, I`ve just BEEN through all that! :huh:

Moving on, you will also note in the snip I`ve attached from the UC GOV. website that if and when you do have to agree and sign a Claimant Commitment they take account of your `Health problems and Limitations` and decide how many hours you can manage to work and you agree to this. So be one step ahead here and be honest with yourself about what you CAN do (if anything) and list what you cannot do SAFELY, REPEATEDLY or RELIABLY. The travel distance you find difficult to do and how you cope with things. Get a plan of action in motion NOW. This will help you argue your side and not feel pressured into agreeing a Claimant Commitment that you know you would not be able to meet. Don`t place yourself into a position you can`t win.
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