Hi there, I'm new here and thought I'd introduce myself. I'm a busy mum of three boys. I've had RA for 10 years, diagnosed after birth of my first son. Struggled on and off over the years but in continuous flare for over a year with more and more joints/organs involved. Have tried various drugs but nothing really helping so trying dietary/lifestyle changes and see if that helps. Have had to give up work and exercise (running/cycling) and quite housebound. Along with the pain all over I just feel quite frustrated with this disease and cut off and lonely as I can't keep up with my friends anymore and although people mean well they don't really understand RA and what it really entails. I'm just looking to connect with other sufferers for support and understanding and particularly other mums who find parenthood challenging alongside dealing with RA. Thanks for reading!
Hi, I'm new here!: Hi there, I'm new here and thought I... - NRAS
Thank you Allanah x
Hi Claire, I was diagnosed in 2012 and like you have also had to give up my sports and work. I know some people manage to continue but as we know, we're all affected differently.
I have a couple of friends who I try to keep up with but find the days out shopping together aren't achievable anymore. I find now when we get together it's for an evening takeaway and chat or afternoon coffee shop visit.
My children are grown up although my 28yr old daughter has just moved back in for 6 months with her partner and dog while they save to buy their own home.
I've just come out of a very long and debilitating flare with the help of tocilizumab injections. I hope something works for you soon as can appreciate looking after 3 children with severe ra must be really difficult. I'll be interested to hear how you get on with your lifestyle and dietary changes.
Thank you - You're so right, it definitely does not take any prisoners which is what is so frustrating about it! so glad to have found some lovely people on here in the same situation xx
Hey there, great to meet you virtually. 😊
I can really understand where you’re coming from. I’ve had RA now for 4 years and unfortunately never quite seem to get it under control. I am in the process of taking a break from work, may need to leave permanently if I can’t get this under control, and also really struggle to keep up with my mates due to my limitations. Like you, they don’t really understand even though they try.
I’ve got two kids and can really appreciate the pressures of trying to look after them at the same time as coping with your condition.
Please do feel free to pm me. Would be happy to connect and trade survival tips! 😜
Thank you Vicky! Sorry I've taken so long to reply as caught the flu really badly then my RA flared even more so have been floored! Its great to connect with people particularly Mums with RA as that's where it gets so hard, trying to remain calm when they try your patience but then feeling guilty when you are in pain and tired to do much with them. Trying to navigate through the craziness of RA and the meds is bad enough but trying to be a good Mum is all the more challenging as children feel it when you're feeling awful. Definitely a balancing act! Will pm you x
Thank you Ruth! x
Hi Claire, welcome to this site. I am quite housebound too unless I get a lift or taxi. I also have had no success with the drugs due to bad reactions so am also trying healthy diet etc. This really is a life changing disease and I hope you can find some help and support on this site. One of the things I find the most helpful is that you are communicating with people who 'get' it. They understand what you are going through and that can make such a difference. It makes you feel less alone.
Oh totally, because it can mentally get you completely down. Just having this understanding really helps because it can frustrate me so much when my friends and family don't. I don't want a ton of sympathy from them, just some understanding. As I cant go on with the inflammation as it is and the drugs effects cause too much anxiety etc, I'm doing a new diet plan which I've attempted before and it works but needs total dedication. I did manage to get my CRP and ESR down on it but then I slip up and eat foods I shouldn't then have awful set back. The diet is paddisonprogram.com/ he is a guy who had awful RA and spent many years devising the program. You can find his podcasts on youtube. His name is Clint Paddison.
Like you I’m fairly new to this site after being diagnosed 18mths ago. It’s been so helpful to connect with others in the same boat, you’re so right when you say that others don’t really understand. I think it’s such a hidden disease, I’d never given it a second thought til I was diagnosed.
Like you I’ve tried various meds but to no avail, I can’t cope with the side effects which have more impact than the pain itself. I’m going to try a more natural approach and see how that goes.
I wish you all the best with coping with this horrible disease. X
Thank you! hearing your struggle with the various meds and wanting to try a natural approach which is where I have been, have you come across Clint Paddison? you can look him up on youtube or go to his website: paddisonprogram.com I'm telling people about him because I've tried his program and it does work. Does require total dedication though. You can do the program alongside your medication. Tried lots of diets and they have not worked, this one really is the only one so far that I've had positive changes with. Unfortunately I've cheated on lots of foods that I'm intolerant to and then i find I flare. I believe in the program, I just need to stick at it. Its tackling the disease at its core which is in the gut. I was in steroid hell last year, the drug just made me mentally fragile, a total fruit loop, never again!x
Welcome Claire, I am relatively new here too. I have had Ra sero neg for a few years and dmards don't work so now on biologics. You will find that you certainly are not alone and help is always forthcoming. I can understand you feeling cut off and friends don't understand..I find that, but the odd coffee to keep in touch is about all I can do. Shopping trips are out now. You have a hard task with three boys. Giving up on sports, work etc makes it doubly hard. Keep pestering your rheumy as one so young should not be suffering in this way. I am much older but am/was active and have all my marbles...so I keep on at him to get me going again.
Never give up, we are all here to listen
Thanks Jan! It feels great knowing that people on here 'get it' where others around me without the disease simply do not understand at all any aspect of how it affects our lives. Giggles along the way are great too!! xx
I am new to HU and also fairly new to RA, I have been diagnosed with psoriatic arthritis. I am going through a terrible time myself coming to terms with the condition feeling trapped in a body that won't work. So I have a lot of respect for you managing to get through your days also bringing up your children. I have reached my late 50's so no little children to try and keep up with on a daily basis just grandchildren who I can back and have a rest!
I hope you find lots of good advice here, as well as new friends, people seem very kind.
Nicole’s Psoriatic Arthritis experience ( healthunlocked.com/cure-art... ) might be of interest, amanda-dunmow? 🤔 🙏 🍀 🌺 🌞
Thanks Amanda. Sorry I've taken so long to reply as caught the flu really badly then my RA flared even more so have been floored! Yes that's my mental problem too- feeling trapped in a body that doesn't co-operate and coming to terms with it. I totally empathise with you. Rest is important and thankfully as I had to give up work I do get rest in the day when the kids are at school. Its great to talk to people who understand on here. I hope you also find the support on here helps you coming to terms with it all! Take care x
Hi Claire and welcome. I've also had RA for 10 years, got 2 kids (6 year old twins). It's mostly been under control for that time, but has been flaring for the last few months and I'm pretty miserable (as I'm sure you'll appreciate!). I'd be interested to hear how you get on with the dietary/lifestyle changes, also it's just nice to be in touch with people in a similar situation. Feel free to pm me if helpful. Best wishes x
KatyDid & Claire_R, mum of 3 (Monica Aggarwal’s) experience might be of interest: healthunlocked.com/nras/pos... ? 🙏 🍀 🌺 🌞
🎈2️⃣0️⃣1️⃣8️⃣ 🎉 🥂 🍾 😘 💋 🎆
Hi there Katy - thanks for replying. I've taken so long to reply as caught the flu really badly then my RA flared even more so have been floored! On the up now but its a slow journey. How are you since you recently flared? Snap - I have twins (boys of 7) and a 10 year old boy. Definitely been challenging with them as I've been in constant flare for a few years and nothing working. I do have a supportive hubby though so that has helped enormously. Trying a new diet plan which I've attempted before and it works but needs total dedication. I did manage to get my CRP and ESR down on it but then I slip up and eat foods I shouldn't then have awful set back. The diet is paddisonprogram.com/ he is a guy who had awful RA and spent many years devising the program. You can find his podcasts on youtube. His name is Clint Paddison. Chat soon x
Hi Claire. It’s good to hear there are other mums here too in a similar boat! Hands down the worst thing about my whole chronic illness journey has been the feelings of isolation. I am usually such a positive, social person that I found that feeling of tackling much of this on my own so hard. I was diagnosed pretty much exactly 3 years ago and have 2 kids 10 and 6. Would love to connect and share some tips on balancing this all with motherhood! Feel free to PM me if you have a minute x