Hi all, hoping someone might have some advice. I'm currently being investigated for all over joint pain. All my bloods and xrays are completely normal, so I think the working hypothesis is sero-negative RA. I'm only 41, self-employed, and have an active, outdoor lifestyle,(I'm a wildlife photographer) and I've heard stories of eldery relatives with twisted hands caused by RA and I'm really scared about facing that in the future.
Because the Dr is still doing elimination tests, (presumably, he gave me dexamethasone injection which lasted 2 weeks and I still have to wait months for the next appointment) is there anything people can recommend to help support my joints to keep any damage to a minimum? I've looked into diet changes, compression support, exercises, but it's all so AI written and flimsy evidence on the internet so I was hoping to hear what helped from real people.
I have struggled with walking and holding up my camera- does anyone use knee braces/ compression socks /gloves to help support joints during activity?
For exercise, is stretching in the morning helpful? Or are things like led pilates classes more helpful?
Thanks!
Written by
Myfavouritefood
To view profiles and participate in discussions please or .
Try not to panic. I know I’m a lot older than you but when I was first diagnosed with sero negative inflammatory arthritis I said to my GP ‘ but my hands look normal’, he said that if people are treated early enough then there is no need for them to develop the twisted hands you see in some elderly people.
Cameras - my husband and I are very keen photographers - I had Graves’ disease back in 2012/3 and I had a lot of trouble holding my camera steady. Around that time I was given a beautiful new camera for Christmas - unfortunately I had all sorts of problems with before realising it was body that was the problem - not the camera.
The store I bought it from was terrific and gave me a very good trade in and my husband changed that Christmas present to a very good quality wide angle lens! Considering I hardly ever used a wide angle lens and he did that’s another story.
I did find an amazing little gadget you screw into the tripod bush, it had a cable from it with a piece of metal that you put your foot on and could brace your camera against, it was very simple and very effective. Shortly after that I was diagnosed and my Graves disease was treated and the shaky hands improved.
Over time we found our SLRs and all the gear we carried around were becoming too heavy for us and we have now changed onto Olympus camera kits which have produced good results.
Husband says a lot of the nature photographers in our club (and some of them are very good) have moved on to Olympus because of the weight - it might be worth looking into that for the future. We also have a friend who takes a lot of good wildlife photographs and she now has a small camper and uses a mobility scooter to get out and about for her photography.
I sometimes use Leki Nordic walking poles for rough or muddy/slippery ground, the ones I bought have quick release handgrips which make using my camera easy. I have fingerless compression gloves too that I wear to keep my hands warm. I have wrist supports too but I only use them occasionally. I have a heated mitt that I put in the microwave and I have digital handwarmers that are good for keeping warm.
Keeping exercising is a good thing to do. I do two one hour sessions of pilates with a teacher who is a physiotherapist and who is very good with people with ‘problems’ I have osteoporosis and the other ladies in my group are all similar.
Most of what we do is stretching and balance - no legs up round our necks or that sort of thing for us. It’s still hard work and it really keeps us all moving.
Stretching in the morning is good, it might be worth trying to get referred to the rheumatology physiotherapist (or having a couple of sessions with a private physio which would be quicker) to get yourself a little exercise routine for morning.
If you could find a physio led Pilates group that would be best really - you don’t want to be in a group more than half a dozen really and you want someone who would ask about your health before taking you on. I also walk for about an hour every day so exercise is good.
Hopefully though you won’t end up with deformed fingers, mine haven’t got any worse than they were in 2015.
I would agree with the comments by fruitandnutcase these days treatments are so much better evening it takes time to find the best meds or combinations Also.if you did start to have some finger deviations there is better surgery too so don't worry about that. I also agree that you need to move all your joints through their range or movements each day and take exercise, any that you can manage. Do it regularly and not a lot on one day and none on the nextTherapeutic yoga would be good if you can give a teacher or swimming or walking.
Try to keep your weight under control so less strain is on your joints.
Do try and keep up the things yiu love even if you have to think creatively!
I can't really help about stretching or pilates - I've considered the latter but never quite got round to starting (not enough classes locally). I was diagnosed with psoriatic arthritis when I was 57. As is the case for so many with PsA, I am also seronegative, which can make diagnosis tricky. I was "lucky" that I had probably had it for long enough that damage showed on the x-rays. For a while, I couldn't carry a cup of coffee in one hand, my achilles tendons (psoriatic arthritis affects tendons as well as joints) were both affected, as were my knees, hips etc. I am a keen amateur wildlife photographer and couldn't use my dslr and telephoto at all, for a while, but there is GOOD news at the end of this story! I panicked and sold my camera, tried all sorts of lighter alternatives (but not the Olympus, which certainly has a good reputation) and wasn't happy. However, once my meds really kicked in my joints improved dramatically, and my tiredness all but disappeared. So, hang on in there. I'll be honest, it took the best part of a year for my meds to really work, but now I have returned to using a decent camera, and it may take me a bit of effort to get up if I lie on the floor, but I get there. Given your profession, if your GP will agree to it, ask for some prescription anti-inflammatories to help you cope until you get a proper diagnosis and meds. But be careful not to mask symptoms when you have a rheumatology appointment coming up. And, try both, stretching and pilates. I know many people also swear by alternating heat and cold on swollen joints. See what works for you. Good luck!
sorry, not to jump thread, what is your psa medicine? I'm on adalimumab 40ml fortnightly and the rheumy and I arehaving trouble determining efficacy. x
Hi, hazmatrec. I'm really fortunate in that I'm just on sulfasalazine and methotrexate at the moment and they work really well for me. I guess this may change in the future. I knew they were working well when I got a major improvement in energy levels
ah, thank you. my liver seems to draw back in terror from methotrexate. the alt monitoring showed somewhere in the five hundreds after day two. dang. 😬
I was diagnosed in my early 60s having led a reasonably sport, fitness type lifestyle. There was a period at the beginning when I struggled to use a kettle or or use my hands for anything much, but drugs do seem to work. Sadly they are not instant. I do feel that daily mobility makes a huge difference to be. I start my day with a 20 minute walk (can reduce to 10 if appalling weather). Then I do a 15 minute stretching mobility routine. I do regular pilates classes too. Some can be found online or find a good instructor. There are times when my mobility is challenged and I just modify things slightly but keep trying and usually after a while I can regain the movement that was temporarily impossible due to inflammation. Good luck and try to look for something positive in every day 👍
I have sero negative and over 30 years ago it took 3 years to be diagnosed,my bloods came back positive but further bloods negative, try Mediterranean diet ,splints at night for hands ( normally made / given by hospital but I have seen on Amazon .Try to keep stress down to minimum,ensure enough sleep and do get low impact exercise.But main thing is to start meds , methotrexate or biologics . And read up on RA , , Good luck
I’ve found water based activities really helpful. Walking or jogging in the pool (shallow end if you don’t have a flotation belt). You can see lots of videos on YouTube or perhaps your local pool has an aqua aerobics class. The hydrostatic pressure is very good on the joints and you are also keeping up your cardiovascular fitness.
Thank you all for your replies- especially fellow photographers, it is heartening to hear similar stories to mine. My symptoms started just as I was going semi-pro and starting to make a bit of money, so the 18 months it took for my first referral appointment to happen was a very frustrating time and it really affected my relationship with my camera and photography in general- I have been very close to giving it all up! My current camera is quite old and actually pretty heavy for what it is- I am going to the Photography show next weekend so will have a look at the Olympus stand with weight in mind, and some of the other gadgets that might make life a bit easier, and photography enjoyable again, (nothing like a bit of gear window shopping to get the enthusiasm flowing again!)
I don't think there's much I can do to push along with medication- naproxen is the only thing they'll give me until the diagnosis is confirmed, and I don't know what they'll want to start me on either- but I can start making positive changes in my behaviour and habits which will hopefully make a difference. I'll see if there are any classes nearby, and start that stretching routine! I like near the sea so will try and get swimming regularly too, once it warms up
Thanks so much for all the ideas- will try to hold on to them and keep positive!
Oooh the photography show 🤗 I’ve been there so much to see - not ti mention so much to buy if you’re not careful 🤣
Have a look on here at Margaret Martin’s website. She’s a Canadian physiotherapist who specialises in osteoporotic patients so her exercises and stretches etc are all very sensible and gentle
Hello and welcome to the group. First of all, do not panic. It's quite rare to get really bad damage to your joints these days. When I was diagnosed in 2009, I had to stop all of my usual sports. I looked for a form of exercise that uses all of my body but in s gentle way. I found QiGong and Tai Chi and that was ideal. QiGong uses all muscles and joints in your body and is a very kind form of exercise. Tai Chi is a little more demanding . I still practise QiGong fir 25 minutes every morning in our garden and Tai Chi several times a week for an hour or more. This has given me a flexible, strong body and physical and mental resilience. Both forms have a meditative side to them. Visualisation is a big part as well. In short they are part of my daily life and I will never stop. Of course walking, swimming, yoga etc may well suit you better. Here are a couple of links that will give you an idea. Of what it's all about.
NRAS have a programme called SMILE-RA which is a brilliant tool for anyone who lives with RA. Particularly for newly diagnosed people. It has a section on exercise well worth looking at plus a ton of useful reliable information.
Dont wait get an urgent appointment and get methotrexate just because its sero neg doesnt mean it shouldnt be treated as quickly as possible to the best possible standard. if necessary and mtx doesnt work the get a biologic as sero neg can cause just as much damage as my avanced spinal degeneration can show! good luck
Hi, there. So sorry to hear that you’re having such discomfort. It can become do limiting. I’ve tried a combination of pain-relieving methods: sauna/steam room at the gym, hydrotherapy (exercises in the pool), alternating Paracetamol/Codeine/Ibuprofen every 4-6 hrs, stree relieving measures as well. I try to do stretch exercises every morning which definitely help. I’m currently taking Fluoxetine because I am a bit of a worry-wart & stress increased joint pain. Hopefully, you find a helpful medium, & try to take each day as it comes. Good luck!
hello! I've been told psoriatic arthritis. I tested positive for the ra antibody at some point, but it's not come back, or they stopped testing antibodies, and I've been told everything that looks wrong right now on xrays is oa related. can you believe sometimes I'm grumpy and don't want to move around or exercise or any of that? but if I don't, I can't do anything. stuff I hafta let alone stuff I liketa or don't. my photography is singing, community music. I use two trough crutches. I'm looking into wheels so that I'm (maybe) not exhausted by the time I get some place. but for exercise, I do something that makes me laugh every time. he calls it the daily wiggle. I bumped into it on yotub or flashgram or something. it was this guy, sitting in a chair, with the words "daily wiggle", and it was basic everyday movements, just: intentional, repeated, with a bit of thought about what was moving. the movement i saw was "as if you were putting hair gel in". just the kind of muscle mobility and building up I need. I've got cauda equina syndrome and eds as well, I need to move everything without over moving, no massive movements. he offers three of them in the day and some extra bits with the subscription. but you can try it out for a bit before that. it synced. each session is five minutes. if I get better at it, the sessions can adapt and get longer. perfection for me. x
Hi there. You have my empathy. I went through similar in early 2021. My CRP was raised, but nothing else showed up in my blood tests and eventually diagnosed Sero negative.
I was also a very active outdoor person (still try to be), keen mountaineer and extreme rock climber, caver, and hiker, basically anything outdoors. I also loved to include photography in my pursuits, at an amateur level.
I don't have any special insight into diet that might make a difference. I suspect a common-sense healthy diet is all that's really needed, excluding anything that you already know causes you problems.
The advice I have received in my desire to get back into the hills and on the cliffs was to listen to my body and not push too hard until the RA is under control, as over doing it can cause more harm than good.
I take that advise to mean regular gentle exercise (walking, swimming, cycling if that doesn't hurt knees). Warning up beforehand and not overdo it. I'm currently in quite a bit of pain and stiffness after a period in remission.
I had an appointment with a physio recently who has experience of RA (her mother has suffered from it for years). She gave the same advice, gentle exercise is good. Warm hands in warm water if they are stiff in the mornings (I take a hot bath every morning, helps my hands, wrists, knees, feet and ankles). I swim in the sea in the summer (too cold for me in the winter!). I'm sure gentle stretching is a good idea, but I've lacked the discipline to do it regularly (and the time with working).
I wore wrist supports (I found computer-based work painful until the RA was under control). The RA was and is most painful in my knees, although I have osteo in those joints as well. I never tried knee supports, but it might be worth a go.
Like you I waited months to get diagnosed and, in the end, saw a rheumatologist privately (after 3 months of GP investigations / appointments without any referral to rheumatology, and then when some bright GP suggested it could be RA, the prospect of another six month wait to see rheumatology on the NHS....).
So if you were able to bear the cost, a private appointment, it might be worth investigating, at least to get things moving sooner. I was prescribed prednisolone (steroid) following the private appointment and then was seen a while after on the NHS, but at least I wasn't in as much pain during the wait.
The NRAS support line may also be worth a call. And we’re all here to support you too, so continue to reach out.
My commiserations - I think many of us have been in limbo between diagnosis and treatment.
I get where you're coming from as I used to work as a camera person in film and TV, working long hours, travelling extensively and carrying very heavy cameras.
You're right at the start of diagnosis, and there's no reason to be pessimistic about the future and think you won't be able to do the job you love.
Diagnosis is key, and it can really take a while. (I hope you've seen a rheumatologist and not a GP. If not - and if you can afford it - it might be worth paying for a private consultation so at least you can get some treatment started.)
Assuming you have RA, the pain you're experiencing now is because it's not controlled, and once you're on an effective drug regime you can hope to return to normal, although this generally takes a few months. When I was away on shoots I used to take steroids, and although they're not to be recommended, they did allow me to cope with long days on location.
I don't know how you work - whether you take pictures at your own pace or if you're employed for a certain period, but if it's the former I imagine it will be easier to tailor your work to what you can manage. In my experience, you can only do what you can do, and it's important to stay within this window in order to function. When you have RA, pushing yourself doesn't work, in fact it makes things worse. Accepting your capacity is one of the hardest things to learn, but maybe one of the most important.
Whilst you're in pain - gentle exercise certainly helps. If it hurts, don't do it, but do try to keep active and moving. I like pilates, and doing gentle stretching in the morning as well really helps me.
In terms of joint support - I had some wrist supports from the hospital, but for work I needed more dexterity than they allowed and couldn't use them. For me drugs were key. Only getting inflammation down allowed me to work.
Whilst you're waiting for diagnosis and drugs - try to be nice to yourself and eat well. Lots of fresh, healthy food, avoiding sugar.
RA is a lot to take on but many people continue their active lives with it and never look back. I hope you'll be one of those
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Newly diagnosed with RA - hopeful and happy!
Sero negative
Poll on rosacea with RA
The other side of living with RA
Possible Mis diagnosis of sero positive RA
