Was listening to an interview on the radio with a triathlon athlete returning to her post after having a baby. Turned out she was diagnosed with RA about a year after having the baby, used the private health route. Just as well as lots of her symptoms were being put down to changes in her body from the pregnancy, birth etc. Now on a treatment regime.
So far so good then she mentioned getting back to her sport , how at one time exercise was considered a no no with RA but now exercise is recommended, so is able to train and compete again in her sport.
Yup my reaction was to groan thinking of all of us with family and friends who think we're not making an effort, much better than we really are.
I'm more than happy for ones like this athlete and also the tennis player Caroline Wozniacki resume their sport, but it makes it difficult for the rest of us not so active.
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I think it just proves that fast, effective treatment is good. The NHS is so overburdened that it’s the same for all diseases that are inconvenient, painful etc but not fatal. My husband had cancer last year saw GP, MRI the following Sunday, in front of Consultant on Tuesday and treatment began following week. So I can’t say it’s all bad just money buys help fast and I went that route years and years ago and RA hasn’t really affected my life that much.
Plus …& this will make me very unpopular…private rheumatologists are far more likely to tell you to keep moving.
Prev to RA diagnosis even in my 50’s I played tennis regularly …my private rheumy agreed that was out….but advised exercise of some sort would help…& he was proved right.
Tempting as it is to cuddle under a blanket with a hot water bottle….movement is more likely to help.
It,s not pleasant…it hurts for a while…but if you can find the right exercises …you will be forever grateful.
Hello Mmrr - Just "tuned in " to the Forum after many months. This business about exercise and RD does come up from time to time. I have contributed my experience of physio and its effects before, but it's worth repeating thay excercise has always aggravated my condition.- I'm now entering the 57th year since diagnosis and am very aware of what helps and what doesn't. Nevertheless, I am still recommended excercises with physios who have no training in this disease.
You are right - I, too, know my body better than anyone. Currently, I have no inflammation and have no intention of risking another bout of swollen joints after a session with a physio. It took months to recover after the last time.
I hear you….but as I said….everyone is different….but right at the beginning of one’s rheumy journey,it is surely sensible to see which side of the fence you fall? it’s worth trying some physio informed movement.
Nobody is suggesting you have to do it….but if one does …just may be you will one of the fortunate ones.
I am happy to have physio exercises and also know my limits and when I cannot exercise have always been a hiker but adapted to less hilly shorter routes and just hope I can do the 2 short walking trips this year if not will read or do something else
That’s my point….. only exercising, stretching, moving under guidance at the beginning of your RA journey…not going at it like an Olympic event….which let’s face it most of us are not capable of anyway.
If nothing works…do what keeps you going as comfortably as possible…but often it is no pain no gain.
I could move my arms backwards & forwards….…but not away from my body without being in agony…but slowly the physio showed me how to try….lying down….I had only tried standing/sitting up.
That was over 20 years ago and I can’t remember what she actually did - but I went on to do further stretching which was what helped me and I’m still reasonably flexible & mobile.
I’m not arguing or commenting on those unfortunate enough not to have found exercise helps…but surely if you don’t give something a go…right at the beginning…you will always wonder?
No pain, no gain is old advice and can cause damage. It simply isn't true, pain is after all a warning signal that something isn't right.
We have moved to know pain, know gain with acknowledgement that what suits one, doesn't suit all.
There is interesting research coming from Brazil and Manchester indicating that some people with RA have sympathetic nervous arousal which exercise further activates. Any exercise can only move forward with highly trained people overseeing. Not your average physio or RA trained physio.
Unfortunately we have no experts to follow in the UK.
As I have often said…we can only comment accurately on what we have personally experienced.
What works for me wouldn’t work for some one else, but I’m sure people who have given gentle supervised exercises…authorised by their doctor….. that hurt a bit to start with ….will agree that a bit of what I will reassess as discomfort is worth accepting if it leads to longterm flexibility without ongoing serious pain.
You have unfortunately had no luck with that…but I don’t think folks newly diagnosed should be discouraged from trying…..I know I am fortunate..but I don,’t think I need apologise . If only one other person is as fortunate..I think it is worth saying.
Absolutely, but the discussion is always about exercise and how it is a must for everyone. I only comment that it isn't for me ...and see what it has released.
I still think many types of RA and it needs research into the differences and not just treat the similarities. I’m lucky the as kidney disease doesn't hurt. If we all had a genetic profile on diagnosis would it be possible to identify the medications that would work best by identifying those on whom they already work.
Remember the people advising us , only pass on what they have read. They don't have RA and a surprising number are overweight, suggesting they do not exercise regularly themselves, or don't eat healthy , or both. They have no, or a limited personal experience , of exercise and healthy eating. And....remember research does not provide absolutes....it reports that...for example......23/24 research participants gained from exercise.....it doesn't say what happened to the 1/24 that it didn't help. I suggest the 1/24 are those of us on the forum for whom exercise isn't helpful.
I’m with you on this, my diagnosis of Adult Onset Stills which manifests as rheumatoid arthritis was made when I was 17. I’m now 61 and know my precise limitations of every joint like no one else ever will, especially young energetic physios who have never even heard of Stills.
I have a fantastic physio who I am so grateful to have on the NHS as I know people struggle to see a physio or have 10 minutes and are sent to the exercises on line she is young and she listens to me. I saw her once when in pain and she was very empathetic and told me not to exercise. She has booked hydro for me a rarity too. Also referred to podiatry which the rheumatology dept wouldn't do.
Everyone is different….in my 80’s l still exercise…especially stretching. Nothing drastic….the first ones are done in bed in the morning.
For those just starting out…find a rheumy physio to give you some suitable gentle movements…..then bite the bullet…& do what you can….it gets easier & hopefully will oil your joints so that you don’t sieze up painfully.
No you don’t need RA to be accused of being lazy. I’m often thought lazy because I’m told I’m told I don’t look my age. I’m afraid I often respond by asking a 55yr old if she’d accuse her 80+ granny of being lazy. Before now…I have produced my passport to shut up these thoughtless people!
Sadly for me walking swimming and dancing carried on when first diagnosed years ago but we are all different and can't judge as what works for me as a stroll around the reserve could be a real issue for many others. And it is for me now, not for RA though that is under good control but CKD so fatigue is the issue not pain. I have a Nordic Trainer in the shed, it's great at my pace when the weather is bad but I only do 4 k, 3 x a week. It takes about 15 minutes but again not for everyone. I think being lazy is a cop out term as those who use it rarely have insight into how others cope with life never mind disease. It's the walk a mile in my shoes really. And I get looks when parking in a disabled bay too.
Oh yes the “there is nothing wrong with her” look in the Supermarket Car Park.
Years ago I perfected the answer”Don’t worry…I have this very infectious disease..but you have to get very close “ as you head straight at the idiot speaking.
Try it….the look of horror on their face is priceless!
Same I do anything and then spend days recovering. I dont give up trying BUT I now know what will really hurt and what will be ok BUT expect to fall into a dead faint of 'sleep/fatigue'
I'm the same. It is difficult when it seems the people in the press are the ones that are doing well with their RA, mainly. Yes I am generalising. I'm very pleased that is the case, just doesn't allow for others that are not in that position with RA, as has been said. 🌻
As an athlete she has constant care and her team know her body probably better than she did. Money enabled her to get help quickly but the most important point was quick diagnosis. I spent years going to the Gp only to be told I was depressed or it was my hormones.S- negative means diagnosing was much harder. Many treatments in and I’m still struggling. Exercise means a flare and many days of suffering or fatigue as now have fibro. I wish her all the best.
I think you have to remember that someone who is an athlete will be very fit to begin with. They will have spent their life training and doing a lot of exercise, their bodies will have been massaged, they won’t have a spare ounce of fat to carry around etc so their bodies will probably be at a different level and in far better condition than most of us who don’t exercise to that level. So I don’t think an athlete exercising will be quite the same as your average person.
For myself if I didn’t move / exercise every day then I would be in a lot more pain - exercise is what keeps me going. A lot of what we do in Pilates is more like stretching but it keeps my joints moving and lubricated and I can’t even imagine what I’d feel like if I didn’t.
I don’t think anyone needs to be training as if they are going in for a Mrs Universe competition, all you want to do is have a programme of gentle movements and stretches, that don’t cause pain and that keep all your body parts moving gently.
We are all different and what suits one person doesn’t necessarily suit another, I am extremely lucky that my Pilates teacher is an experienced and sensible older physiotherapist who looks after us very carefully and can adapt everything our group does to suit our very different bodies.
I have osteoporosis as well as inflammatory arthritis and know what I should and shouldn’t do to my body and although I am a great believer in physiotherapy no way would I let anyone tell me to do anything that I know isn’t right for me.
I tried yoga once but had to give up when we started used our hands to support our weight and hold poses , it was agony for me. Is Pilates free from that type of exercise and more stretching instead? I’m keen to try it when I’m well again.
I do pilates the trigger point one doesn't use the hands really. I cannot do this either some do use the hands but I find most of the teachers understand if you cannot as they usually ask which part of the body as issues and we all respond. Usually most people have a joint issue in classes. Or you could mention to the instructor or check out what they do.
I’m having some cancer investigations at the moment but hope to try Pilates in the spring although all my joints are affected by Stills Disease but it’s worth trying I think.
Oh I was useless at yoga. I must have tried it at least three or four times before I discovered Pilates. I could never breathe at the right time and I used to get cramp in my feet, eventually in my final class we were told not to do something if we got cramp so I didn’t- then got told off for not doing it properly! So that was it for me and yoga whereas Pilates suits me perfectly. I’d say we are moving gently most of the time in that we do a movement usually 8 times with the right leg or arm or foot then 8 times with the left arm or leg or foot rather than holding poses like yoga but then classes can be different.
Most of what we do is done lying down on our backs, sides or fronts although we do work standing up too, I’d say what we do is mostly stretching - we’re all around the same age 70-80 so although we get a really good work out it is pretty gentle.
I think you have to chose a Pilates class very carefully. Ideally you would be asked about your health and any medical conditions you have. You don’t want to be in a group of more than about six or so because you want your movements watched carefully. My present teacher is a physiotherapist and she is wonderful. She can adapt everything to suit us all - in fact I’d say she knows more about my body than I do.
Ive been doing it for about 25 years and in that time I’ve come across some good teachers and some awful ones. Years ago, before I found this lady who I’ve been with for about 12 years, I went to a session in a church hall where there must have been about 40 people all rolling about on mats grunting while the teacher shouted instructions at us ! That was weird and I ended up needing physio to straighten my neck out so never again.
I also went to a group where one young girl tried to tell the teacher something hurt and the teacher just told her to do it anyway! I mean I just wouldn’t have done it but I didn’t like the teachers attitude so that was another class that I didn’t sign up for again. So I think you’ve got to be careful who you choose to teach you.
My main point wasn't so much exercise or no exercise very personal decision. I was super fit then reduced to being bed ridden prior to treatment. I too do various types of exercise , but pay for it in painful, swollen joints, what else can you do but try?
My point was that these amazing athletes are diagnosed, treated, and off they go giving the impression that's all that's needed. Whereas the variety of responses show it's individual and ones round us will wonder why we're not up and at 'em?
I was fit too prior to RA, long distance walker, nordic walker, swimmer and skier. Outdoors in all weathers.
Now 11 medication failures on, I can barely walk 50 steps.
I've tried hydrotherapy, physio directed exercises many times and Thai Chi, all have resulted in injury. I move as much as I can in the house, use crutches outside.
It is difficult to deal with the comments at times about others doing 'better' with RA, asif I would choose the life I have now over my previous life?
Doing daily routine jobs around the house is more than enough exercise for me and some things, which I never thought twice about doing in the past, can be a bit of a challenge. As for having a shower, well that's more like an ordeal. Walking is also a problem with my deformed feet and it doesn't take much for joints to become painful and callouses on both soles to harden and thicken up then break down and begin to ulcerate. Shoulders have been giving me serious problems of late. My rheumatologist recently injected both with a steroid and suggested that I try to use them as little as possible...easier said than done obviously. Knees next...if I stop using my riser/recliner chair to get me up and on my feet for a couple of days then they begin to play up. Suppose I could manage to squeeze a soft ball a number of times, but only with my left hand as the fingers on the right are too clawed to even grip the ball.
Oh yes hate the days I need to shower & wash my hair the thought is always overwhelming. Ones would never realise what a mountain it is doing the usual , typical chores.
Going today for my pedicure & reflexology use this between my chiropody appointments. Bone spurs etc in my feet also the bane of my life. 🤗
Tell me! I’m psyching myself up to wash my hair at this very minute. I’ve been putting it off for about three days. Who would have thought something as simple as that would be something to put off as long as possible.
My can of dry shampoo is now one of my best friends - along with my bobble hat to convert it all up.
Love the sound of your pedicure and reflexology - more the reflexology because my amazing podiatrist trims my toenails trimmed every eight weeks, but a bit of nice foot massage would be very welcome. 🤗
A shower wears you out for the rest of the day. Most days I wash my hair and leave it to air dry . I frighten the children these days 😂😂😂. I can go a week if things are particularly bad even the dog gives me a wide berth
I'm with you.Having a shower is a major undertaking for me too, add in a hair wash and that's me spent for the day.
Making a cup of tea and pouring out some breakfast cereal is also a major undertaking, every morning, no matter how much I prepare the evening before (laying out dishes, filling the kettle etc)
I'll just say it, those that push exercise 'for all' frankly don't have a clue what they are saying. The prejudice is shocking.
I took it for granted that members appreciated that some people, no doubt the majority, are capable of excercising while others are not. Seems like I got that one wrong, at least for some members. Don't they realise that some people's joints etc, are in a worse state than theirs. If not then come and and try my body out for a bit.
As for that tennis player returning to her sport, well along with recieving the best early treatment, it's also possible that as her RA is in the early stages then it's mild and responds well to treatment. I mean my mobility was still very good for the first few years then slowly got worse but never really affected me until I'd had RA for around 8 years. After that it was downhill all the way.
When we moved our 39 steps over the road I put an ottoman into the bathroom as my seat rest spot after the shower! Best thing I have done so now I have a rest spot.
Here, here Wishbone! I'm so glad you pointed that out. If others with the same condition struggle to appreciate how much the severity of it can vary, then what hope do we have of those who don't have it ever grasping it?!
I was late reading through this thread, but when I did I was surprised by some of the posts. Do some people actually think we all have a similar degree of pain, joint damage and mobility. Next thing they'll be saying seropositive RA is more painful and destructive than seronegative. Hmm, being seropositive myself I might well agree with that!😉
Hi WBSorry late reply as having more trouble than usual typing at present as knackered elbow being more knackered than normal😡 It is quite bizarre isn't it, that the idea of the disease having a wide range of severity (or not), could be so difficult to understand??? As for the dreaded positive versus negative argument.🙄 That's been going on for as long as I can remember- so at least 40 years - ever since it became something that was differentiated!🙄 In very early publications I was given, it did actually used to say things like seropositive was thought to be more serious/destructive whatever but I think that's now considered a very out of date view. Like you say, whichever kind it is, it may be manageable (if you're lucky), and a pain in the, well everywhere😉 if not! - be it positive, negative or undecided. It's a question of how it affects each person individually and how lucky you get finding a drug that works. Unfortunately, we know that only too well - grrr!!
I've had RA for 20 years but am pretty late on the RA scene, at least with regards to trying to educate myself by joining this club. Like you, my understanding is there's no solid evidence to say if one form of RA is any more serious than the other as you could probably tell by my reply.
I'm not too bad thanks except I have another UTI so have stopped my meds for the 3rd time this past 12 month thanks to recurring UTIs. After a period of 3 years being free of the things they have decided to make a comeback for some reason. Still, at least the previous two cleared after a single course of antibiotics so that's something.....fingers xxxx for this one.
I guess with the sort of treatment the lady is getting she is in a better place than most. I was very fit and active before my diagnosis - different classes 5 days a week including aerobics and aquarobics, walked everywhere everyday. Now, as much as I try, I struggle. I can't do waterwork anymore as I have little or no kick in my legs - I was using our local hydropool until it was closed down post covid - the warmer water helped so could get a decent upper body workout. Now I use an exercise bike and I do taichi (as long as I don't get the wobbles) and a 7 min sitting workout and pilates stretch. Wish I could say it has helped but it has not. But I think the point is that non RA people would hear this type of interview and put the rest of us down as malingerers and whingers!!!!
Yup that's my point nanny_bee. As from all the replies look how many of us were already enjoying exercise in various ways & now reduced to painful outcome post any activity. Doubt we've changed our mindset about activities/exercise just the body not co-operating like it did.🤗
🙈 I am able to walk and swim but mostly I'm told I should sit down. We all know that doesn't help but unless it's another ultra athlete tell you to do more I'd ignore them. You know your own body best. Still I get were your coming from.
I couldn't run if a man was chasing me with an axe! On the other hand I am much better if I keep moving. I garden, walk and swim. I seize up like I've been eye-balled by Medusa of I sit or stand too long. There are times when it's really painful to walk or do stuff. On those days I tend to rest.
Also, I find I get incredibly low in mood if I don't go out at least for a walk. I really feel for those less mobile than me.
Survival bias. It is a problem everywhere because journalists like the 'feel good' stories so they look for them. The poor kid that made good and is now a millionaire CEO. They never show the poor kids whose lives are constantly blighted and never get ahead.
Same with these athletes. She may have gone back to how she was before the RA and pregnancy, but these stories never show the vast majority who don't.
As for exercise, there was a peer reviewed paper looking at why people with RA weren't doing their exercises. The majority said because they were too busy picking the kids up from school, doing the shopping, housework, garden work and so on. All that left them with no energy to do the exercises. It is as if women's work isn't exercise and energy sapping!
Personally I have had trouble with physios too. I was told by one that there was nothing wrong with me because I had good range of movement. X-rays showed extensive osteophytes which before she saw the x-ray she was in denial that the lumps on my hands could be osteophytes.
And another one told me after a really bad flare (pre diagnosis, because the GPs wouldn't listen to me) told me I just had to do bridges. For 7 months I did them and the pain just got worse. So I stopped and the pain stopped!
Finally during the pandemic I had a video appt with the director of clinical physio at the university I am registered with. She stopped me doing any exercise until the inflammation was under control (PsA). I had a bad reaction to a couple of NSAIDs, and then methotrexate, but the rheumy refused me any other drugs.
Yeah, survivor bias. And I am not a survivor, I, like most who are not elite athletes are the trudgers in life because we choose the wrong parents! (as in, our genetics set us up to fail)
Me too, I accept what I have and try to do the best I can within my limitations. Wasting valuable energy fighting against RA isn't a good use of my valuable energy.
Same here it’s a waste of energy worrying about what I can’t do now, so I enjoy what I can do. Life changes for everyone we get older, more shortsighted, a bit chubbier perhaps. The hair changes colour (well not necessarily) and the wrinkles appear. I’m not 35 now so when I was I had different expectations and aims, now I’m happy to wake up alive each day!
Very interesting observations cyberbarn, agree carrying out usual tasks is active enough , resulting in exhaustion, pain etc.
Regarding the other care team members like GPs , physios etc they are trained in RA treatment so not always really able to help. Fortunately my contact with physios has been helpful.
Your last comment about "choosing the wrong parents " fascinated me. I often wonder how many of us had difficult childhood backgrounds? One of my theories as to future cause of RA is "distressing" childhoods. 🤗
No I think it's genetic, I've had genetic testing for my AKI and have had the pANCA test. I dont know why as not medical but I had a great childhood. My mum had RA as did my Nan but she died young anyway. I grew up on a farm, eating home grown with a lot of exercise so it could be linked I suppose to more urban and polluted environments. But it's present in the fossil records and bones of medieval peasants and presumably not much pollution then? I live in an area where years ago Marsh Ague (malaria) killed people and its present as a genetic change through generations as Cystic Fibrosis. My cousin a pathologist published a book about the genetic links from ancient diseases to modern diseases. Its odd as I have Cylindrical Brochectasis which is the CF gene but turned off. She said as she traces ancestors on BBC that I'm from the legitimate family but she is from a servant. Hence I got the old jewellery. lol x
When I said 'choosing the wrong parents' I meant the genetic side of things, not the environmental side of things. There has been a lay narrative that adverse childhood experiences can cause pain and disease later in life, but actual research isn't really supporting that hypothesis. First of all, most people have had some adverse childhood experience and yet most people turn out okay. The people that came up with the ACE theory were only looking at one side of the coin.
Additionally there has been recent research that has shown that there is an increase in CRP in patients with chronic pain which is independent of any psychosocial problems. jpain.org/article/S1526-590...
The sort of thing I was referring to is things like there are gene variations where people with a certain variation, when they have osteoarthritis they don't also have pain from the osteoarthritis. With a different variation of that gene they do have pain. So nothing to do with psychosocial or environment causes, and everything to do with which alleles you end up when that egg and sperm meet.
While I am thrilled that the professional athlete has overcome RD and being post pregnancy, she is one of the rare examples of exercise helping. It's too easy to criticise those less able. My response to accusations of laziness would be to ask them that, as they are young and fit, why they aren't climbing Everest?
My son and DIL did climb Everest 5 in May 2018. Apparently you walk for 9 days before you even see the mountain and it's like a motorway for people. They met Ben Fogle he was going down as they went up. My son got altitude sickness and was air lifted down despite years of training and both super fit. The super fit can't do somethings as beyond human control. He is very sporty but sadly defeated by nature and they took time to acclimatise. She got to the top for a few seconds and photo.
My daughter was at Everest Base Camp, the furthest she was going, but was taken off due to altitude sickness, she was super fit then. I too got altitude sickness in South America, all my companions were fine. What is ok was some, isn't ok for others.
Just so my son recovered in the Australian hospital but is tall and could not get insurance to go up again. My DIL is short and it was said altitude sickness is random but seems to get taller people first. My son said watching Sherpa woman carry huge loads was awesome and humbling. He did get fed up with curry though and said the helicopter trips were great. DIL teaches yoga so might have made a difference but they did a lot of training so might go back one day.
Many congratulations to them both. It's quite an achievement and one of which to be rightly proud. It's not a common thing to do
I'm a mere mortal living in the US without access to a rheumatologist unless I want to drive for hours and pay cash, so I fend for myself. I get my blood work done at the doctor's office and I do a much better job of managing my health than any rheumatologist could do. I have three autoimmune conditions, only one has shown itself, rheumatoid, but exercise is so crucial and so is diet. If only people knew how much they could improve their condition through exercise, diet, lowering their stress. I went cold turkey, changed my life, as soon as I got symptoms. I'm still not on medications. I'm not anti-medication. I will use it if I need it. All of this is to say everyone should try and get back to some sort of exercise because it will make you feel better. If you can improve your diet and lower your stress, even better. Also, why is everyone always trying to convince their loved ones that they are very sick? People just don't care. Everyone has their own burden. Rheumatoid isn't the end of the world. If you feel bad, you don't owe anyone an explanation. You don't have to get them to feel your pain. Your job is to feel as good as you can
As someone who did exercise , and was a fit outdoor person pre RA, why would I choose not to do the things I love and stay at home whilst my family and friends continue with the lifestyle I yearn for ?
A variety of exercise programmes have injured my inflammed joints and soft tissues. A change of diet and now on my 11th RA med have changed nothing. Only prednisolone reduces my inflammation.
You are an exceptionally lucky person who has found a way to control their RA.
What you need to understand is that RA comes in many varieties, it is not one disease, you are exceptionally lucky you have a variety that is responsive to exercise and other interventions.
I understand RA comes in many varieties. I've actually got 3 AI diseases. I cared for my mother who died a horrible RA death. I'm simply saying people could improve their symptoms, but that is not what these online forums are for, right? I was disabled for about 3 months in severe pain. I changed my life. It wasn't luck. It was determination. It was fortitude and resilience. It's not people like you and Happy5 that I'm trying to reach. I hope I reach someone who really wants to feel better because it's possible.
With all due respect , I don't think you will reach the people you want too by almost saying it their own fault for not improving their condition. Determination does not improve RA, modern medicine does.
People who live a healthy lifestyle generally feel better than people who don't , RA or not. Or indeed other autoimmune disorders.
You are not the only one who has voiced changing lifestyle 'cures' ...on the forum, from family / friends ....whoever.
Medical Science, flawed as it is, isn't so blinkered as to ignore the benefits of living a healthy lifestyle for everyone, quite the opposite. But a change of lifestyle alone will not 'cure' RA.
You all are too defensive. I'm not voicing a cure. I'm not cured. I'm suggesting people could feel better. You do have some agency over your health. And with that, I'm done with this conversation. But for anyone who is interested, you have to find the right diet for your body but you can't go wrong by eliminating gluten, processed foods, dairy, and sugar. Get rid of as many "comorbidities" as you can. More than anything else, you can't have a defensive mindset.
You seem to be very defensive of your assertion, which isn't new and doesn't add anything to our understanding of RA.
I'm saying living healthy is the way to be , it would be most odd if anyone on the forum was suggesting an unhealthy lifestyle is best would it not ? But it won't rid you of RA and won't mean you don't need meds.
NRAS have a lot of well researched information on lifestyle and RA, I'm sure you are aware of it. And, indeed offer online modules and regularly run live FB events for those who wish to know more, and of course the excellent support services they offer.
I was a fitness freak pre RD and continued for 2 years but each class or walk I could do less and less. Bending down on to the floor was almost impossible getting up required help. I honestly thought I could get the better if this disease and continue my life as normal Ha not a chance
🤣 I certainly don't feel the need to convince loved ones, or anyone else I am sick. They decide to offer unwanted, unhelpful comments which I ignore.
Rheumatoid isn't the end of the world, but for many it was /is life changing, and the topics on her , with their responses are testimony how ones do get on with their lives in positive ways.
I have a friend in Canada who has auto immune illnesses and " cured" them through diet. Course out of kindness used to keep on to do same as you go "cold turkey" use this diet she recommends, exercise.
However being someone who is very tuned to my physical health I can feel my symptoms returning when I don't use my control meds. At present though diet & other things I'm in remission, but don't risk stopping my control meds.
I'm not telling anyone to get off meds. Did I say that? If I have to use them someday, I will. You all are always such bullies to people helping themselves get better. Continue wallowing. I'm saying diet and exercise actually help alleviate symptoms. But you have to have the right mindset to make the changes. I'm hoping to help someone who is willing to make a change alongside their meds if they want. I just want people to know they are not doomed like these forums portray. If we're looking at tennis players, Venus Williams has Sjogrens and also uses diet and obviously exercise.
Oh bless now I'm a bully for saying each of us are responsible for our own health.
I'm more than happy with your approach but it implied others should try it "cold turkey" was your expression. Maybe sensitivity on my part of feeling implication I'm not putting enough effort in being as healthy as possible brought out my reaction.
As shown by the many responses on here we're very individual how the condition affects us and our treatment needs to be tailored to our individuality.
So hey lets agree we at times disagree and that's ok too.
It is just that your tone sounds flippant. Your disease could take a horrendous turn at which point I assume you’ll want no special understanding or help from family and friends. Your disease will hopefully stay mild enough to control with diet etc. Very sorry about your Mom. Bless her memory. ❤️. I considered myself very healthy when this disease got me. Active. Not obese. Ate well. Poof!
I once decided to go cold turkey after being hospitalised with a serious infection, which my consultant at the time reckoned was due to taking strong immune suppressants. I somehow managed to put up with severe debilitating pain in many joints for around 6 weeks before contacting my rheumatologist and having to be wheel chaired from the hospital carpark to the rheumy department. If you can manage your RA with exercise and healthy eating then all I can say is that you are very lucky or you have a mild form of RA.
Cold turkey, meaning I changed my diet over night. No, I'm actually seropositive RA. I have 2 other autoimmune diseases - limited scleroderma and Hashimoto's - that I keep quiet with diet and exercise. For five years now. I was severely disabled for the first three months of this disease, but my mother had RA and I didn't want to die the horrible death she had, so I chose a different path. Your pain wasn't any greater than mine. I had vomit-inducing pain. I'm lucky in that I made my own luck. I WANTED to change everything to get healthier. I'm hoping someone with an open mind will take heart in that they can feel better
You can’t possibly know that one persons pain is more or less than another’s. Maybe you are one of those lucky people whose RA ‘burns itself out’ it does happen. Do you not think if it was as easy as changing your diet for everyone then the NHS would champion that and save hundreds of thousands of pounds that is spent on medication for people. Are you going to tell us this diet change you instigated? I’d definitely do it if it guarantees a med free life. I’ve tried many diets over the years, none of which made the slightest difference to my pain and joint destruction and I was a healthy, very active person eating a healthy diet when I got RA which took years to get under control. Believe me I and I am Sure many here want to do anything they can to be healthier but it’s not as easy as you make out. I’m glad you live without meds, maybe we’re just unlucky 🤷🏻♀️
Who said it was easy? It was hard. One of the hardest and best things I've ever done in my life. And I didn't tell anyone to go without meds. All that defensiveness. You all cling to your diseases. And you can see my response to the other person as far as diet goes. It's not just diet though. There are so many other components. But most important, you have to believe that you have agency over your health. Good luck to you all.
A change of diet would be easy for rheumies to prescribe. That’s what I was saying. 3months to be med free does seem easy to me, as I said it took me years to gain control. Maybe I should have said easier.
I didn’t say you told anyone to go without meds.
I certain don’t cling to my disease or I wouldn’t be here still by now.
Ok you have to believe, but you still haven’t said what this change involves ? I’d really like to know what I should do.
If I had agency over my health whatever that means I’d never have got a kidney injury! Your posting b———is for whatever reason rude and so patronising. Are you trolling ?
No not unlucky but wiser than someone who hides their I’d! Utter offensive trolling methinks. I wonder at the ever present it worked for me without mentioning anything that relates to real experience of disease. Utter b———t.
I too am seropositive and have a fairly healty diet. Also have a number of other health conditions, including RA induced pulmonary fibrosis thanks to stopping meds and going cold turkey that time. Another right nuisance of a condition I've had for the past 10 years makes me prone to recurring infections, I actually have one now. I'm glad that your diet and exercise regime work for you, though can't see where I said it didn't, or that my pain was worse than yours? Neither am I sure what you mean by "made my own luck", but perhaps I'm not trying hard enough there.
Your post is offensive and to be frank in my experience not true. I have Hashimotos and if not treated you simply die! It just the name for hypothyroidism caused by antibodies. It is impossible to diet or exercise it away, it doesn’t hurt either. So please before you post it might be a good idea to do your research before telling people how you held something at bay that is unstoppable like RA it continues because the body is slowly trying to destroy its own cells and once destroyed the antibodies move on to another bit. If what you’re saying is true then perhaps you were misdiagnosed because death is inevitable with thyroid failure in time without treatment.
Couldn't agree more Wishbone. Some people get lucky and it stays mild or stops. Some of us never get a break. That's most certainly not because I haven't made my own luck. 😡🙄
That’s exactly what the GP who referred me to the rheumy said when I said my hands didn’t ok as if I had RA - he said if we treat people early enough we shouldn’t see deformed hands. But it’s not all just hands is it?
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