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Shining a light on the reality of living with arthritis

Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
edited October 2019 in Coffee lounge

This week, 7th-13th October, is National Arthritis Week.

The charity Versus Arthritis (formally known as Arthritis UK), has released a new campaign called #PainNoFilter and they said:

On Monday 7th October,  we are launching a bold, new social media campaign to shine a light on the true reality of the 18 million people in the UK living with arthritis and musculoskeletal (MSK) pain.

Millions of people in the UK live in pain every single day.  And arthritis and related conditions are the largest cause of that pain.

It’s not short-term or one-off bursts but often constant and persistent. In fact, half of people with arthritis experience pain every single day and as many as eight in ten say they experience pain ‘most days.’


Yet the pain of arthritis remains hidden. In a public poll we ran two in five people with arthritis told us they actively hide the pain of their condition from their loved ones. Half do so because they feel people wouldn’t understand what it’s like to live with. Almost a third (30%) of people with arthritis also actively avoid social media because of its ‘filtered’ nature.

Despite its scale and impact society dismisses MSK pain as “just a bit of arthritis” or “just a bit of pain”. 

That’s not ok and we need your help to change that.  

#PainNoFilter aims to show the reality of living with the pain of arthritis and related conditions - no airbrushing, no filters, just a single image of what a moment in the life of someone in pain looks like.

If you have arthritis or a musculoskeletal condition, we’re asking you to share one image of your #PainNoFilter reality on your Instagram using the hashtag and tagging us @VersusArthritis from 7 October.

Need support?

You don't need to face arthritis alone. Call the Verses Arthritis free helpline (Monday–Friday, 9am–8pm) on 0800 5200 520.

How do you think pain should be spoken about? What more can be done to let others understand what it is like to live with chronic pain? Let us know in the comments below.
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Replies

  • AilsAils Member Posts: 2,268 Disability Gamechanger
    This is an awesome campaign and a really worthwhile read to get the message of Arthritis and MSK out there.  I know that when I am in pain I don't like to admit it to others and just get on with it, but it must be terrible living with the pain of Arthritis and MSK.  More campaigns and education of others needs to be done to show how severe and debilitating chronic pain can really be and how much it interferes with people's lives.  Thanks for sharing this with us @Chloe_Scope.  I hope that it gets the attention it deserves.   :)
    Winner of the Scope New Volunteer Award 2019.   :)
  • SwordfishSwordfish Member Posts: 54 Pioneering

    Contrary to popular opinion, humans can regrow cartilage in their joints, researchers have found. Experts hope the research could lead to new treatments for a common type of arthritis.Osteoarthritis, in which joints become painful and stiff, is the most common form of arthritis and is thought to cause pain in about 8.5 million people in the UK alone. It is caused by a breakdown in the cartilage that protects the ends of the bones, as well as the growth of new bone around the joint as the body tries to repair the damage.It has long been thought that adult humans are unable to produce new cartilage, unlike a number of animals, including salamanders, which can not only repair damage to joints but grow whole new limbs.

    Guardian for full article 

  • veritercveriterc Member Posts: 196 Pioneering
    I have found exercise in a hospital hydrotherapy pool is extremely helpful dealing with arthritis pain.  The warmth soothes aches, the water gives one buoyancy and I have no fear of falling.  This therapy is prescribed all over Europe, but in UK the NHS is trying to close hospital pools as a cost-saving.  I have found doctors reluctant to authorise it, because of this, but ASK - it's really helpful and well worth the session cost (first 6 sessions free, then £3 - £20 per session after)
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Thank you for sharing this @Ails, I too hope it gets the recognition! 

    That's really interesting @Swordfish, I hope further research will be beneficial for those in chronic pain. :)

    @veriterc, I'm glad you brought this up. I have had hydrotherapy in the past and found it extremely beneficial as well. It's such a shame that they are trying to close them down!
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  • veritercveriterc Member Posts: 196 Pioneering
    I wonder if in the future Scope might mount a campaign to save hydrotherapy pools?  When money runs out in a hospital, closing the pool is often the first option, without taking into account the benefits of hydrotherapy.  In Europe (I think we know they have better care there for many conditions) hydro is important - in UK I find doctors sometimes don't even know there is a pool in their hospital! 
  • chiariedschiarieds Member Posts: 7,954 Disability Gamechanger
    I honestly don't know how pain, especially chronic pain, can be better spoken about other than by those experiencing it. The trouble is that such pain is subjective, & medical research most likely needs to look at objective findings. Pain is acknowledged by researchers, but sometimes difficult to quantify.

    Campaigns such as this hopefully raise awareness of pain further, but things like stem cell research appear to be in their infancy, with mixed results, so it may take time.... as @Chloe_Scope has intimated, she hopes further research will help those with chronic pain, as do I.

    @veriterc From the other side of the fence, so to speak, as someone who helped others with hydrotherapy, I can only endorse that hydrotherapy can indeed be beneficial.
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    That is very true @chiarieds, pain is very subjective. I hope these campaigns will highlight how difficult it can be.
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  • pollyanna1052pollyanna1052 Member Posts: 1,998 Disability Gamechanger
    My husband has rheumatoid arthritis, which I believe can be quite different to osteo....but nevertheless, the pain can be excrutiating. He`s had it over 35 years and used to be literally carried home from work as he could barely move. After trial and error, he found the best medication for him. He injects daily with Enbrel.

    But, bless him, he has been my carer for 20 years. I have 2 part time carers as well, but he bears the brunt of it.
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Thank you for sharing this @pollyanna1052, I imagine this can be very difficult at times!
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  • pollyanna1052pollyanna1052 Member Posts: 1,998 Disability Gamechanger
    My husband has rheumatoid arthritis, which I believe can be quite different to osteo....but nevertheless, the pain can be excrutiating. He`s had it over 35 years and used to be literally carried home from work as he could barely move. After trial and error, he found the best medication for him. He injects daily with Enbrel.

    But, bless him, he has been my carer for 20 years. I have 2 part time carers as well, but he bears the brunt of it.
    correction...he injects WEEKLY...not daily!
  • CressidaCressida Member Posts: 770 Pioneering
    @pollyanna1052 so pleased you posted the info about Enbrel. I'm on anti-tnf myself and my face went 😳 when I read he injected daily! Lol. 
  • mike62mike62 Member Posts: 34 Courageous
    Thanks to all of you on this thread I've taken good ideas from you guys. I've had lower back pain and days off work for 30 years and I'm now 62 and been lying on our lounge floor this weekend.
     I was reffered to our hospital physio today and noticed a hydro pool (maybe I can use it).
    My shorter left leg and drop foot from cp has caught up with me and walking posture not good. Stiff muscles, issues with facet joints & discs give pain. But with physio, better shoe rise, insole and stretches I have to do each day, hoping to improve. 
    I will also get lower back nerve numbing injections soon.
  • veritercveriterc Member Posts: 196 Pioneering
    Do try hydro - I find the warm water incredibly soothing, and it's wonderful to get the freedom to exercise without worrying about falling over.
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Hi @mike62, I'm glad we have been able to provide some advice. It sounds like things are pretty difficult for you at the moment. I hope the physio can help. :)
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  • zakbloodzakblood Member Posts: 419 Pioneering
    20 years a suffer and now the DWP says i'm fit and well and no longer have it, marvelous the DWP, beats going to any doctors or hospitals and by eyes alone, they can tell and know better than any MRI or bone scan, so now i'm fit to work, so waves Arthritis bye bye, seems it wasn't to be, where a doctor then a consultant, and senior consultant and later on a professors states reading the scans you have it, all 5 of them over a 20 years time span, but a nurse on looks alone states and writes a report and states you haven't for the DWP WCA, got to love how medicine has changed over the last few years.
  • veritercveriterc Member Posts: 196 Pioneering
    This is appalling - it seems DWP isn't accepting the word of professionals.  Is there anything we can do to support you?  
  • zakbloodzakblood Member Posts: 419 Pioneering
    tbh the word professionals now extends to anyone who wish to do the job at the WCA for the DWP, as long as they can almost read, as the follow a screen prompt and kind type unto a fashion, there given the job of making our lives hell, i'll break it down so it's more simple, more than 20 years ago, while at work doing very heavy lifting and carrying for years, my back got worse, it ached more, and because of lack of sleep, i moaned more, so the wife left, short story that part was a blessing tbh, but anyway, my doctor who was retiring at the time, didn't really want to know, take paracetamol and get back to work, was his answer to everything, but when he left, i had a young female doctor who was at first, somewhat different in her approach and at least sent me for my first scans in 1999, resulting in a follow up MRI, as the bone scan shows something, but not enough at first to go on, so they followed it up, so in the end after a 6 months wait and 2 scans later, they inform me i have 

    spondyloarthropathy, spondylarthritis with canal stenosis with posterior disc bulges at L2/3 and L3/4, sagittal and axial T1 and T2, degeneration of lumber spine.

    didn't sound like much to me, but it seems it was enough for them to recommend a change in work, so over the next 20 years, i re trained in ICT, but was on incapacity for most of the next 20 years until it changed to ESA, and well i won't go into that, as they send a letter stating quite clearly you won't be any worse off, then year after year you are, with one thing or another taken off you, so over the time of being on ESA, i now have lost the access to free health care, so have to pay, so from 2014 until today, i get my meds of friends and family members so the cost is nil to me.


    so 5 scans letter, that's 10 in all, as bone scan and MRI's so yes i've has more than my money's worth out of the NHS that's for sure, so far like the first professor said, which followed the same advice as the consultant and senior consultant and doctors over the years, i've got worse not better with age, so now 5 fitness to work assessments, with 4 passes and now 1 failed, on eyes alone, as my rights i refused a exam, and just attended a interview and kept calm and blank and stated what i'd already put on the sent forms, the same ones used since day one, just added the more upto date info on tablet changes and the likes, so have never even been put into a work group, always a support based one, until April of this year where a nurse says for the first time, you have scored 0 points.

    so i'm appealing, so  far i have a tribunal except letter and that's it, the assessment center has agreed in writing that 5 out of 6 points i made on the day of the report findings, where in correct and grossly wrong with some not even applying to me, as referred to as a man on one page of a report and as a female on the next, the amount of errors and basic mistakes was shocking, and as she also broke the law and refused me for it to be recorded, with letters as proof and one signed and dated by the test center, the case against the nurse and center on the day took a good turn for me, as now the assessment center has finished it findings, and while they won't alter the score, have written that the report was wrong in 5 out of the 6 points i made against them, so one down, now onto the nurses and midwifery council, at first they didn't want to know, so i informed them i'd already taken it to the DWP and also to 3 MP's and had a meeting with one and letters from 2 others, and again they seemed to change direction and there minds and now i have a ongoing case against the nurse on gross misconduct, if found guilty, she will either be retrained or sacked . dismissed.

    so hopefully this will be completed before i go to tribunal, by they there  is more in my favour than against so for the moment, no but thanks for asking, it's a shame that one so called professional fights against what another one puts down on paper, or even refuses to read and take points of a document provided by another professional of much high rank.


    so will update asap, and thanks again for taking the time to reply

  • mrbuttonsmrbuttons Member Posts: 221 Pioneering
    veriterc said:
    I have found exercise in a hospital hydrotherapy pool is extremely helpful dealing with arthritis pain.  The warmth soothes aches, the water gives one buoyancy and I have no fear of falling.  This therapy is prescribed all over Europe, but in UK the NHS is trying to close hospital pools as a cost-saving.  I have found doctors reluctant to authorise it, because of this, but ASK - it's really helpful and well worth the session cost (first 6 sessions free, then £3 - £20 per session after)

    hi Veriterc Im so glad you have access to treatment that works for you.i am always amazed at the blind and willful arrogance of those responsible for making decisions about which treatments are available for certain conditions.it is common sense that hydrotherapy works for arthritis .its non invasive and very.effective, who in their right mind would close pools to save money? When you think of the days off work and the cost of medications used by sufferers of chronic pain its a no brainer that hydrotherapy should be encouraged. Trying to do healthcare on the cheap is counter productive and flies in the face of evidence that proves some non medical interventions are equal to if not better and less expensive in the long term than traditional medication regimens.

    I hope you are able to continue with the therapy and it will be available for as long as you need it.i hope your condition continues to improve too. :)

  • veritercveriterc Member Posts: 196 Pioneering
    Thanks for very supportive comments.  I had a hydro session yesterday and the pool was rife with rumours of closure.  Sadly, what you say doesn't seem to be listened to, and I notice that the showers have broken down and not been repaired, and other maintenance work hasn't been carried out.  
  • Philippa1961Philippa1961 Member Posts: 19 Courageous
    I have osteoarthritis in both hands, right wrist,both hips, knees and ankles but I don't like saying how bad it is when the pain is at it's worsed.  Nor do I like giving in to it.  We have two dogs so that's a good reason for going out for a walk and I like swimming which is helpful as I feel better afterwards.
    Whenever you find yourself doubting how far you can go, just remember how far you have come. remember everything you have faced, all the battles you have won, and all the fears you have overcome.
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Thank you for sharing this with us @Philippa1961. :) 

    I'm glad you are able to get some fresh air with the dogs and that swimming can be helpful. 
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