Hello! I’m new here. Diagnosed RA on my 29th birthday in April (what a wonderful gift lol). I am always looking for support groups and haven’t found any in Bristol - does anyone know of any groups around Bristol/south west?
I am/was a keen gym goer having competed in body building in 2017 before having my little boy last year. I am striving to get back to fitness and managing my condition. Generally I am a positive person but this weather has been very tough for me... anyone else struggling?
Great to meet you all !
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ChronicMother
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Welcome to this lovely community. Sorry to hear about your diagnosis, rest assured we all relate. I was what I thought healthy did everything right then the shock of diagnosis. Then there is acceptance and getting on with your life despite your diagnosis.
As for the weather, it kept me home - I could not venture to work. It was nice to be home with my adorable cats 😌
Hello welcome to our group lots of support when feeling overwhelmed and advice on here, hope your pain isn't too bad xx
Your not on your own so many of us here both from people we know and Doctors saying oh you will feel much better now the sun is here good for your bones🙄they just don’t get it. For most of us it is torture.
It’s harder at a young age with children because you have to keep going. Many of us have to hold down jobs just to survive financially ( don’t start me on benefits) there’s always a mountain to climb.
I too loved exercising doing and enjoying pushing myself physically need to know my limits now or just rest. Medication takes time to work.I was relatively settled until this year then things went downhill so just waiting to start new meds. Many people have been successful on their meds hopefully you will get sorted soon and will feel better about things .
Hang on in there and welcome it’s a good bunch of people on here .
Try to keep in the shade as much as you can, I know you are a young Mother, when you have to go out wear a long skirt/dress and loose long/three quarter top. It will help to keep the sun off you and soak up any sweat. My Grandfather worked on a farm and in the Summer he wore a rolled up long sleeved shirt to just below the elbow. He commented that he could keep going longer than the young ones who stripped and wore shorts. With the medication we take it does make sense too. We burn too easy. Take Care, not easy for a Mum
For me, doing all I can to optimize my health naturally has made all the difference. I use no meds and have no symptoms unless I stop the natural methods. It's a lot of work and very strict, but for me it is freedom. Everyone's condition is unique. Some may always need med while others wean off after years of discipline and others avoid med completely, but self-care is harmless, improves your entire being and rubs off on your family. I'd go all in to optimize health habits no matter what else you do.
I use the Paddision Program. Though it was developed for people with RA, people with other inflammatory conditions use it too. Although it doesn't require you to go off meds and doesn't say you should ignore your rheumatologist, people who do the program religiously often can reduce or eventually go off their meds. It takes work and time, and the idea is that you do what you're already doing but start this and track your inflammation and adjust with your rheumatologist's guidance as your inflammation declines. I didn't have good medical care and just starting this immediately once I realized I had an inflammatory condition. I've learned a lot and realized that symptoms I've had for years were related to two other conditions as well. When I'm religiously on the program, I tend not to have symptoms, though heavy stress can cause some to appear. The program involves stress reduction but sometimes it's hard to avoid. I would check into that. While I don't pay a penny for it, I pay in the time I've spent finding the info in random places on the internet, reading hundreds of related medical studies, and experimenting to optimize it for me. Most people would be better off buying the book at least or investing in the support program. You have to make that decision for yourself. Be aware that there are lots of people out there who don't actually know what the program is or how it's done or run who will make baseless claims about it to discourage others from even trying it. I can't say why anyone would do that except to feel that their own choices to use meds only are the only choices they have and the right ones. But, don't let that discourage you from doing healthy things that will also improve your heart health, may reduce allergies and skin issues, and so on. Do what is good for you and let others make their own choices. The program isn't run like a big corporation with a slick website and salespeople. It's just there to help people and those who are paying customers are paying the costs so the people who do it can afford to provide it. If you can get the info from the internet and understand enough to follow it for a while, you can do it free and benefit right away. For most people, doing the first two days proves to them that this is real. Some, those who take meds, should skip the first two days and it may take longer for them to see the difference, but not forever. At most, weeks. For me, I could see progress quickly but it would seem to plateau for a while and then lurch forward and so on. Just be committed and consistent and don't get discouraged when you make mistakes. Just start again with what you learned. You see, the dominant bacteria in your gut influence your cravings and you can end up eating the wrong thing based on that and habit or who is around you. So, cravings can influence you. Eventually, as you help your gut heal and be dominated by healthy bacteria, that will change for the better. Just be ready to learn a lot over many months and maybe years. It's worth it. My son is also much healthier because he eats what I eat.
The Paddison program doesn't work for everyone, though it is always good to have healthy food. I took a food intolerance test and provided I avoid the foods it brought up (wheat, oats and egg yolks), generally am ok. Also I take Bicarbonate of soda when I have a flare up, which helps. But then I am lucky and aside from one swollen finger and painful joints never really had the full set of symptoms.
Hi there! I hope you find a suitable, local support group. I too was diagnosed young, a month before my 21st birthday and I’m now 60. There have been a lot of highs and a lot of lows, my main advice to you would be “use it or lose it” and try to maintain a positive mental attitude.
Thank you all for your lovely beautiful messages 💜 glad I am not alone x
Hi,welcome! your in the right place here, these wonderful people are full of great knowledge and fantastic advice. We all struggle with this damned disease but in time we all learn to live with it and tweak our lives around it, so don't despair it's not all doom and gloom, keep well, you'll get there 🤗 X
Welcome! Everyone is wonderful and really supportive here. I hope you find a support group in Bristol soon and know that we are a friendly bunch and we will always be here to support you.
Yeah the weather is a real pain in the a....., something to do with the air pressure affecting the joints is how my Rheumy explained it....
A great place for advice, support, to have a rant or a laugh.
A decent, although disease-ridden bunch, you'll find veterans that have had arthritus for decades, alongside newbies just diagnosed, but we a have one thing in common...we're not the same.
Different approaches, different drugs, different responses with different results.
Nothing is set in stone.
We're not all UK, either, so it's likely you'll find folk on here around the clock.
You haven't said if you're sero positive or negative.
I'm a month late and my guess is the weather has started to cool a little, even down in Bristol now, so things might be a little bit more bearable for you.
Weather, from my standpoint, concerns me only insofar as is rain, hail or snow on the way in, how long will it stay and when's it moving on?
My own experience has led me to believe it's weather (some put it down to pressure, as you'll have read and I guess the relationship is there, but I don't know how that relates to frost) that makes our conditions worsen or improve.
It can be hot as hell and I'm fine, but if it's hot as hell and overcast I just know I' be swearing before long. Lol.
Same with cold weather.
Maybe #Ineedacheckupfromtheneckup but sixteen years since I presented regular symptoms and a few years of minor flares before that has me convinced. Lol.
I'm just coming out of a recent flare and it looks like the weather is going to play nice for a little while, so I think a bit of gardening is on the cards.
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