'Us' and 'them'

stickywicket
stickywicket Member Posts: 26,697
I've followed the links given by our webmanager on Robert1878's thread on 'Say Hello' and also read Leigh Walmesley's story in the recent Inspire magazine. I know these stories of super-athletes are intended to inspire, possibly mainly the newly-diagnosed. I also know I'm an 'old lag' in arthritic years my main achievement being acquiring a pass in 'Preliminary Test A' in Riding for the Disabled's Dressage Tests :roll: So maybe I'm a cynic, and I know that meds have improved enormously since my diagnosis, but I still just don't understand how some people are able to manage such sporting prowess.

What would be really helpful would be to know not just that they have done so brilliantly but also to know the difference between 'them' and 'us'.

1. What meds do they take / have they tried and failed and how soon did they get access to them?

2. Given that high levels of exercise boosts the immune system, how can they exercise to the extent that they do without their immune systems 'going off on one' and setting off the arthritis?

3. Is it purely coincidence that the two people mentioned, plus Phil Mickleson, the international golfer, all have PsA?

3. I see that paralympian archer Leigh Walmesley, who has sero-neg RA, is to undergo shoulder surgery. I wonder if competing to such a high standard has been a factor in her needing it.

It's all very confusing. I can grasp that we all need to keep fit, have a good diet, not smoke etc. But is it realistic, or even helpful, to give the impression that anyone with an inflammatory arthritis and sufficient will-power could achieve such dizzy heights?

(I've just read through this. It isn't meant as a grouse though it does read a bit like one :oops: I'd just genuinely like to know the answers.)

Comments

  • helpline_team
    helpline_team Posts: 2,593
    edited 30. Nov -1, 00:00
    Hi Stickywicket,

    Thanks for your post to Helplines. My first thoughts are that we won't know the details of people's treatments and medical history unless they decide to share them, so an answer would need to be in general terms.

    I'd like to see what our information officer thinks too and come back to you. But to follow up on Sharon's point, if people are diagnosed and treated quickly, some of the immune damage may not occur, so in some people's cases their experience of recurrent flares may be less.

    I'm not sure that we know for certain that high level exercise need provoke a flare if someone's disease is under good control, so that might be a good question to put to a rheumatologist.

    The question about a particular sportsperson needing surgery - I don't know that it will be possible to answer.

    But we will try to reply to you.

    (I've just found out that our information officer is away this week - so please bear with us as we would need his input before replying.)
    Kind regards

    Guy
  • stickywicket
    stickywicket Member Posts: 26,697
    edited 30. Nov -1, 00:00
    Thank you, Sharon and Guy for such quick responses.

    I do understand that, in the early years, flares can be few and far between. I myself was diagnosed at 15 but the 'rheumatic fever' I had aged 11 was probably the true start. I still had months / years between flares until after the birth of my first son. (Thanks, R :wink: ).

    I also understand that a young person's mindset is different. So was mine. When offered new knees aged 31, I knew they wouldn't last forever but reasoned that I wouldn't need them as much aged nearly 60. (It's true. A young Mum needs them more than an ageing Granny but I now feel knees are rather useful things at any age :lol: ) Besides, my first rheumatologist had told me a cure was 'just around the corner' and I believed him. That was about 50 years ago.

    I would be interested to know whether or not these super-athletes are actually helping to prevent flares and joint damage by their ultra-training regimes or possibly bringing them on earlier.

    As for exercise and the immune system – my understanding is that regular hard training boosts the immune system. Given that inflammatory arthritis arises from an over-active immune system, I'd have thought the last thing we would wish to do would be to boost the immune system when the meds we take are designed to dampen it down.

    Still learning after all these years :D

    No rush re your information officer but it'll be interesting to see what is said.
  • daffy2
    daffy2 Member Posts: 1,636
    edited 30. Nov -1, 00:00
    It's a difficult balancing act isn't it? On the one hand it is important that people don't feel their life has to 'stop' because of arthritis, but on the other it can be dispiriting for those who, for whatever reason, struggle to retain some sort of normality and quality of life.
    I also sometimes wonder about those who, reading such accounts, then think that they should be able to do things and either find themselves in conflict with the doctors or risk being hard on themselves when things don't go to plan.
  • helpline_team
    helpline_team Posts: 2,593
    edited 30. Nov -1, 00:00
    Hi there stickywicket, and thanks for your continued thoughts on the matter. Please don't hesitate to give u a call - 0808 800 4050 - if you wish to talk about it further.
    All the best, Bharti
  • stickywicket
    stickywicket Member Posts: 26,697
    edited 30. Nov -1, 00:00
    Thank you, Sharon and Bharti. I can wait. It's not something that actually worries me but, whenever something like this crops up, I do start wondering.
  • helpline_team
    helpline_team Posts: 2,593
    edited 30. Nov -1, 00:00
    Hi Stickywicket,

    As expected our information officer was not able to comment on the private aspects (1) of other people's arthritis treatments but he did have some points in reply to your other questions:
    2. The second point is that the immune system cannot be boosted. http://www.health.harvard.edu/healthy-eating/what-can-you-do-to-improve-your-immune-system (watch out for the pop-up). Excessive and prolonged exercise has been shown to have an adverse effect e.g., Glesson, M. Immunological aspects of sports nutrition Immunology and cell biology. , 2016, Vol.94(2), p.117-123. ‘Prolonged bouts of exercise and heavy training regimens are associated with depression of immune system functions that can increase the risk of picking up opportunistic infections such as the common cold and influenza. Some common sport nutrition practices may influence immune system status in athletes {edited }. In order to maintain robust immunity, athletes need to consume a well-balanced diet that is sufficient to meet their requirements for energy, carbohydrate, protein and micronutrients. Dietary deficiencies {edited} are well known to be potential causes of immune dysfunction and an adequate intake of some essential minerals {edited} are important to maintain a healthy immune function. Vitamin D may be a particular concern {edited } and many individuals exhibit inadequate vitamin D status during the winter months.’

    It is thought, that some foods or micronutrients such as antioxidants can reduce inflammation/pain. I’d suggest that this is not the same as ‘boosting’ the immune system…

    The important point is that there is little good evidence to show that exercise or diet can boost the immune system. They do however, contribute to overall health.


    3. If the two athletes who have PsA. were mentioned, I’d guess that they were interviewed because they had experience of arthritis.

    There are 5 sub-types of psoriatic arthritis, one of which, asymmetric psoriatic arthritis, may be mild, but we don't have enough information to answer thoroughly.

    I've edited the document he cites - but you can read the full version by following the link.

    Kind regards

    Guy
  • stickywicket
    stickywicket Member Posts: 26,697
    edited 30. Nov -1, 00:00
    Thanks Guy - and Information Officer.

    I've read the article and have concluded that the immune system is a very complex bit of us about which we seem to know very little. We can dampen it down but can probably not boost it.

    I'd guess these athletes have managed to contract a milder form of arthritis than most of us and got onto meds quickly. I hope they continue to work for them for a long time.

    Thanks again for your work.

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