I just wanted to ask if anyone on biologics goes cold-water swimming? If so would you mind sharing your thoughts/experiences as to improving or worsening of symptoms?
I'm 43 with Ankylosing Spondylitis (diagnosed in my twenties), which luckily has been treated for 5ish years with Simponi (just a wee bit of symptom break through at week 4 from injection).
Unless you've been under a rock for the last 3 years, you will have been bombarded by news articles about the open or cold water swimming craze...
18 months ago a friend suffering with anxiety and asked if I wanted to try open water swimming (which it's supposed to help). I said sure (and later worried about my sanity as we changed in a freezing drizzly wind by a rough sea). So we started swimming once a week in the north sea during the winter. My friend's anxiety attacks and general mental health massively improved over the winter, and I felt really great doing it too. I feel the benefits enough to carry on swimming even though my friend no longer feels the need to any more.
My curiosity is this; Cold water has been shown to stimulate the immune system. In those of us who are prescribed immuno-suppressive drugs to treat auto-immune diseases, do we really want to stimulate our immune system? i.e. by doing so are we fighting against the desired effect of the drug?
I haven't personally noticed any negative effects, but I'm interested in hearing from anyone with their own first hand experiences!
p.s. Near me is a women's only sea swimming club called "The Blue-tits". I'm considering setting up the male equivalent, what do you think -"The Peacocks"?
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Huguen
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I don't honestly know whether cold water swimming boosts or supresses the immune system. All I do know is that if you enjoy it and it's not doing any harm why not? Your idea of a gents only swimming club is inspired and made me roar with laughter for the first time in a long while and for that I thank you
Great name for your club!I have Stills Disease which manifests as RA for me.
Cold is my enemy, the slightest coolness turns my joints into rigid stiff extremities and even affects between my rib bones , weird yes I know but proves I’m special.
I do have friends who report increase mental well-being from cold water swimming.
For me though the hydro therapy pool is just right.
I had never heard of Stills, so you are a rare and special find! It sounds very hard to live with in Northern climates? Pretty sure the cold swims wouldn't be a good idea for yourself, but I hope your hydro pool helps a bit?
Recently spent time at the coast and spotted quite a few people taking a dip in the sea. I had a quick paddle to my friends amazement but if I lived closer to the sea would love to try cold water swims. Would be interested to hear of people's experiences.
Maybe rather than stimulating the immune system, it helps it reset? Ours are misguided, poor things, and focus on the wrong target. Perhaps cold water creates the conditions for adjustment?
I’m on biologics, live by the sea & love it, tho a bit too cold this time of year for me. I have a friend with RA who swears by it and do find it soothes aching joints tho we all seem to be different reading some of above. What worries me more are the discharges of water companies. My council has also sadly shut down our lovely local swimming pool which I used regularly pre covid. Love the names ☺️
Thanks for this. Glad it works for your friend. You mention my biggest genuine concern. Being immuno-suppressed and swimming in dirty water. I don't swim in fresh water as per my consultant's advice. The stretch of sea I use is supposed to be clean enough to fly a blue flag. So far I've not had any problems, but for some people who don't have access to good quality bathing water, the benefits of swimming would be massively outweighed by the risk of serious infection. It's such a sad situation that some of our coastal waters are in 😐
Thanks all of you who have responed so far -it's interesting to hear your thoughts.
Glad you like the name of the men's swimming club
For me, the cold swims improve my energy levels, but also help me sleep. I'm not aware of major changes to my Ankylosing Spondylitis symptoms. Mentally, I feel more robust and better equipped for those days when everything seems stacked against me.
For those of you who are unable or not inclined to try cold-water swimming, perhaps let me give you some second-hand entertainment from an evening last year...
I re-started my weekly sea-swims in September. If it's still warm and nice conditions I sometimes like to go at night.
One evening I cycled to a quiet beach nearby which has a slipway. As usual, I stood my bike by the edge of the stones with rear light on, which guides me back to my clothes/towel.
This particular evening, I randomly decided I wouldn't bother getting my shorts wet, there's nobody around, I'll just have a quick swim without. So I'm enjoying the freedom and tranquility of a quiet swim as nature intended... Until headtorches suddenly appear on the slipway, and I hear voices and a dog bark. The distance between the water's edge and my bike are probably a 30 second run at best. So I rapidly had to decide, do I stay in the water hoping they go away, or make a run for my towel? Momentary hesitation decided for me. The torches investigated my bike (having seen my light) and then the lights turned in my direction, and -oh god- started walking towards me! I waved sheepishly and received a “Hi, you okay?”. I said yep all good, just having a late swim! Thankfully before I started getting hypothermia they continued along the beach with their dog, and I -probably looking like an alien abductee- beat a rapid and cautious retreat to my clothes! Lessons were learned!
Its a completely silly idea. Imposing this level of stress on the body to fulfill a fashion is not the actions of the wise or someone with inflamatory arthritis!
I went wild swimming three times in September of last year and thoroughly enjoyed each 'swim'.... more of a dook, and a paddle really, than a swim. The feeling of wellbeing and relief on my joints lasted for hours afterwards. Unfortunately there isn't anywhere close by my home to let me to do so with any regularity, but I do hope to be able to do on a wee break later this year.People with RA have an immune system that doesn't work as it should do, rather than being over stimulated, if you feel wild swimming is helping you then there is no need to stop, unless advised to do so by your rheumatologist and/or GP or by you feel unwell by doing so.
I just love the cooler weather and feel so much better in winter, spring and autumn than I do in the summer. Heat is not good for me., the cold water is wonderful.
I have a friend who also belongs to a wild swimming group called the blue tits , but I've never heard of the peacocks, brilliant.
I'm interested and glad that the swims gave your joints some relief 👍. Sorry it's so hard to find somewhere to go -I'm very lucky to live near the coast.
My specialist just advised me to stay out of slow moving or stagnant fresh water to avoid water-borne illnesses. I definitely plan to carry on unless I feel unwell doing it.
I've actually been 'corrected' via PM that bluetits are a national club open to all genders -very sorry- my local one only has women, so I thought it was women only!
Hope you get a few dips on your holiday. Thanks for the input. H
Hi Huguen. Swimming is generally reckoned to be good exercise for those of us with dodgy joints, so if it makes you feel good keep it up. Do be careful not to get to overdo it and get chilled though, it will make you more prone to picking up bugs.
I thought just in case you're reading about cold or open-water swimming here for the first time and thinking of trying it, please;
Don't go alone, check with your doctor/specialist about it, join a local club, check local conditions beforehand, and READ MORE (LINK BELOW) about cold water swimming to understand the potentially dangerous consequences.
My husband is a great fan and he ends each shoer with cold water. He says that it sets him up for the day.
I used to do it years ago but since Raynauds and Inflammatory arthirtis I just hate it. Yes, it makes me feel invigorated afterwards but it's so traumatic that it's no longer worth it! It doesn't cause a Raynauds attack (the mechanism is slightly more complicated than getting cold).
Your husband sounds like a real tough nut! I know exactly what you mean by traumatic. I tried cold showers and like you I hate it! I don't really know why it should be so different, but it's just horrible 😆. Thanks for your input, and best wishes for a pain free 2022. H
I’m interested to read your post as I have been wondering about it too.I moved to the North Norfolk coast recently and have had a couple of dips in the sea, feeling absolutely fabulous afterwards.
We are lucky that we have blue flag beaches here, I’m contemplating it but a bit nervous. My brother who lives in Devon swims every weekend right through the winter too - the sea is a bit warmer there than here though!
Perhaps I’ll ask my Rheumy.
So glad it works for you, but best to wear the old budgie-smugglers to avoid causing a stir 😂😂😂
Hi, Huguen. Love the name for the men-only club! I have psoriatic arthritis, moderately well-controlled according to my rheumy (I don't entirely agree, but won't go into that here). I live by the sea (south Devon) and started swimming in the sea again last summer. I have always felt the cold badly so I stopped in about October, even though I have a wetsuit. I find getting the wetsuit on very difficult at times because of my painful fingers, but feel fantastic after the swim . I haven't found the effect lasts long, though, so I think of it as my whole-body ice pack, rather than the cold resetting my immune system. I get dreadfully cold whilst changing, so asked for a decent changing robe for Christmas and hope to be able to extend the season this year. We are all different though. I know some people find that having a cold triggers a flare, whereas I find that my joints feel great when I catch a cold. After my booster jab, too, I was running up and down stairs and had more energy than I knew what to do with. So if it works for you, keep doing it!
I have also worried about the wisdom of swimming in potentially dirty water (although I am only on mtx, not biologicals), so I tend to check the Safer Seas app before I swim, or go to the beaches with no outlets.
Hi Ascidian, thanks for sharing your detailed experiences of how you find cold water swims. My only thought after you say about your challenge with the wetsuit, is can you find one with zips on the wrists/ankles? It might make getting in and out a bit easier on your fingers? Just a guess though...
As you point out, we're all different, so it's important to listen to our bodies feedback.
I also got a decent changing robe for Christmas a couple of years ago, which definitely helps keeping warm when changing. I also take a flask of tea or hot water, plus some chocolate or nuts just in case (but normally don't use either).
Glad you're also aware of the infection risk -you're right to be careful even if not on biologics! I hope you manage to get back in the water when you're able, and enjoy the swims and their effect!
Hi. Thanks for the SAS link. Also.. I have yet to ‘give it a go’ but bought a thermal wetsuit, hat, gloves and socks, and an extra swim hat to keep my hair dry and a ‘change coat’ to set me up… I fear the cold, so would much rather be too hot… I am going to Oban in April, but probably won’t brace it then 🥶, but going to Pembrokeshire later in the year which will probably be my first dip..
Pleased to hear the thread has been of interest, and I hope you enjoy your new home in Norfolk. I also have family ties in Cornwall -it's sometimes who I thank for my AS, since my ancestors seemed keen on marrying each others close relatives!
We're lucky here to have pretty clean water. You sound half converted already having enjoyed your first couple of dips -that's how it starts
Yes, chat it through with your specialist beforehand especially if you're a bit nervous. If/when you decide to 'take the plunge' ping me a private message and I can share some good spots and local tips.
And my lesson was learnt -I'm definitely keeping my shorts on or where I can see them in future
Hi, I’ve just come across this post…..I’m a member of the Bluetits.
I started cold water swimming soon after being diagnosed with RA and it’s been my saviour.
Funnily enough I seem to swell up more when I’m not swimming and when I’m warm.
I definitely notice when I haven’t been for a while.
It has a beautiful numbing effect on my sore swollen body.
Also, it’s so good for my mental health. I really struggled with my diagnosis (I was 41 with 2 young children) and just getting out, seeing people and being in the natural environment is so helpful.
I understand it’s not for everyone but for me it definitely has had a positive effect.
Thanks for sharing EmJ. It's good to hear all the positives and negatives from those with the different forms of arthiritis.
It sounds like a real positive for you, and I'm pleased you've found something to help you with your relatively new diagnosis. I agree that it seems beneficial on several levels -all of which combine into a very uplifting boost.
Sun is shining, and I have an unexpected day off so I might be off for a dip later
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Feel a bit on my own with this
A first Christmas on my own 
Taking MTX with a cold
Update - good and bad
Yeah...my own stupid fault, then
