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I'm 20 with RA. Advice needed!

Nov 04, 2016 6:17 PM

I was recently diagnosed with RA and I am struggling to deal with community college, regular life, and my constant pain. It is so hard to have to change your whole life style right after turning 20. I feel like there are so many things I can't do anymore. I am also struggling to make it to classes, get work done on time, and just survive right now.
Is there any other young people here that deal with chronic pain? How do you handle school? How do you deal with people your age when they just don't understand & the people who think you are too young to have chronic pain?

Nov 04, 2016 8:11 PM

Wow, 20. I thought I had it hard. Chronic pain is a tough time, but you will find support here. I wish you the best.

Nov 04, 2016 8:24 PM

Thanks PapaBear. I am glad to have found this app and community!

Nov 04, 2016 9:42 PM

Try to focus on what you can do instead of what you can't do. That's a general rule to surviving autoimmune, one that we all struggle with.
I'm glad you have a diagnosis at 20. i only say this because after hurting my knees at 12 (never recovered fully) and some muscle damage in my shoulder at 17 (never healed and has morphed into everything hurts all the time and chronic muscle cramps and spasms and all sorts of things they tell me are fibromyalgia) i just thought i was a weak complainer who sucked at life when i went to school. Always tired, struggling to walk and breathe properly, doing everything i could just to get an ok mark. i actually dropped out of university and went to a technical school, mostly because after everyone else had dropped out i was at the bottom of the curve and even though i didn't fail any classes i failed first year engineering and would be getting points removed from the next year's grade point as well as not getting into a speciality, so it wasn't worth the money to stay and probably fail again without falling any classes. (Canada)
Is there anyway you can do an extended program? Some programs here can be taken at a reduced work load, like 4 classes per term instead of 7. it'll take longer, way longer, but it might be doable and cause less long term damage than just pushing through.
As with people your age not understanding, most people will never understand at any age, unless they have some form of chronic pain themselves. I had no friends in school, at all. My goal was to survive, get good grades and land a decent paying job. Currently at work no one but the 'old guys', the ones retiring soon that have old injuries that cause them pain all the time, believe me. In fact several of them think I'm faking both my pain and sensitivities. The bosses haven't spoken to me since i got a note from the specialist they wanted me to see saying that my conditions were real and needed to be accommodated.
As for the people who think you are too young... fuck them. If that were the case no kid would have cancer, need organ transplants or any of those medical issues that know no age when they pick someone to torture. i find doctors to be the worst for 'you are too young'. I'm still getting that crap and I'll be 30 in December. Apparently I'm also too young to be making my own birth control decisions.
Take each lifestyle change one at a time instead of looking at them all at once. i would do diet change first (boyfriend has severe ra and since cutting grains has gotten way better, but everyone is different) and if there is a food contributing to your inflammation levels removing that triggee will help overall pain and energy levels. Once that is habit and no longer overwhelming if move on to something else, like some sort of physical activity daily. The stronger your muscles supporting your joints are the better it'll be for those joints and they might not decay as quickly, and surgery recovery will be easier and the less weight you have on your joints the longer they will last (but try to maintain healthy weight please, don't go eating disorder to keep weight off).
One thing at a time and as they become habit add another thing. I would recommend, if you can, to do both naturopathic and normal medicine. The boyfriend tried naturopath only at the beginning (i think he was 17 when diagnosed) and then he got worse and quit that and only did western medicine. Then he got worse and both knees and a hip replacement later (before 37) he decided to try western and naturopathic medicine together and now he's doing better than he has in years. He really likes his naturopath and acupuncture and massage seem to help the muscle problems that falling apart joints and loss of range of movement cause. He can now lift the one arm shoulder height and he hasn't been able to do that for years.
I'm not trying to scare you. his ra was uncontrolled for a long time because of a really bad rheumatologist.
Anyways, those are my suggestions and stories. Feel free to ask lots of pointed questions. There is a lot of experience here on a lot of different problems

Nov 04, 2016 9:50 PM

Thank you so much for the response! I am lucky that my mom has RA so the symptoms were recognized (and believed) earlier than most. I am starting my first RA medicine tomorrow and I am both relieved and terrified haha. I think I might have to go the route of taking longer... I guess I juat can't accept that yet :( I really appreciate you and your boyfriends personal experience. It is nice to know others have been through the same thing, even though it is horrible to go through

Nov 04, 2016 10:04 PM

I can't believe you read all of that. i didn't think anyone actually read my rediculous long responses to things.
As much as it sucks I'm glad you got recognized and believed because of your mom. I hope that she is able to help you with managing your symptoms and the large amount of info that was thrown at you.
Are they starting you with an anti-inflammatory, an anti-arthritis drug or injections? I hope you find something that works. My boyfriend is down to his anti-inflammatory and 2 arthritis medications as well as one med to counter side effects. he was on an injection and infusions as well, but with adding natural medicine in and changing his diet his inflammation levels came down enough that he didn't need to injections and infusions any more

Nov 05, 2016 9:21 PM

I just started on methotrexate today. Obviously it will be a while before we know if it works. I really dont know how I would handle all of this without her knowledge, and all the knowledge I already have from growing up with her and the disease. I just went off of prednisone and I feel like shit today so hopefully between the methotrexate and the new nsaid I got it will be able to control the pain. And yes! I read the whole thing! I'm a bit desperate for help and others experiences right now 😊 thanks again!

Nov 06, 2016 11:50 AM

Best of luck. hope you start feeling better soon, i know the methotrexate is supposed to take 3 months to build up enough it starts working but i hope the nsaid helps soon.
I've heard that the injection works better than the pills for a lot of people, so if it doesn't seem to be working don't be surprised if they try to convince you to do weekly injections.

Nov 06, 2016 1:42 PM

I don't have RA but I am 25 and go to Canada's equivalent of an Ivy League for engineering. I struggled so much my first few years and failed so many courses because I just couldn't keep up. I would suggest slowing down early. I wish I had learned that early. I was taking 7 and 8 classes a semester which works out to like 80+ hrs a week of work. I just Couldn't do it. I now take 4 or 5 classes. It is very hard still being in school at 25 but I will be so happy when I am done. It really doesn't matter whether you finish in 4 years or 7 like me. I have learned that your really have to look after yourself while you're in school. It's so important. You really need to make use of your schools disability department. They will allow you more time for exams and sometimes you can push things like assignments if you're in the middle of a flare. I don't have a formal diagnosis because my doc sucks so I don't have access to it but you definitely should take all the help you can get. As for people not getting it, it's true no one will ever truly understand what we go through. I found a few friends that I still talk with even though they've been out in the workforce for several years. Sometimes they could be a little insensitive. They thought it was funny that I always hurt and had to keep a rigid bedtime. They nicknamed me gramps. I really didn't take anything negative by it because they weren't trying to be mean. But you can do it. Just take your time and make sure that you look after your health. If you ever need an ear to listen let me know.

Nov 06, 2016 3:07 PM

Thank you Courtney! Due to changing my major it will be taking me 5 years, but I might have to take longer now. The hardest part is that if I take any longer I will be off of my parents health insurance before I graduate. But I know I will find a way to make it work no matter what! Good luck finishing your degree!

Nov 06, 2016 4:13 PM

Petra3, take it easy and rest when your body needs to. Cutting your college courses does take longer, but it's well worth it; I had to in my late 20's & 30's. We've all struggled with others not understanding. Most of us have, with time, learned to either ignore them, or speak up to them in humor or sarcasm. Learning to get through it comes with time and experimenting with different methods of treatment & suggestions from others. Just take it one day at a time, one step at a time. Hugs love & prayers for lots of quick successes, as you find your way through what works best for you! 🙂💕🙏🌸

Nov 06, 2016 6:23 PM

It is so nice to hear people saying to take it easy and slow down. I am just not used to that at all, I have never been behind or even procrastinating on work and life, I have a 4.0 GPA, I used to spend my free time crafting and handmaking every Christmas gift, and playing lots of board games with my family. Now I feel so lazy and weak. I can't even do one of those things let alone all of them. So thank you for saying it's OK. The funny thing is that my family doesn't pressure me or push me to do more or succeed more it is just all internal... I have to find a way to let some of that go but I'm not sure how just yet 😕

Nov 06, 2016 6:30 PM

Im so sorry you are going through this. Im 26, I dont have RA but I do have osteoarthritis in my back and a lot of nerve pain. I just take things day by day. If you find meds thay help thats awesome, but just remember if meds are helping still take it easy. I hope things get better for you

Nov 06, 2016 6:37 PM

❤️ Mknight thanks. I am so sorry that you have to deal with that. I think your last point is the hardest for me! Whenever I feel better I just GO and then regret it the next day haha

Nov 06, 2016 9:10 PM

I certainly understand your drive to always succeed. I had a hard time with lowering my expectations. I was always an over achiever. As for your crafts, I gave them up for a long time but I'm starting to try and pick some of them back up. When I'm having a flare up I like to crochet as long as my hands and arms can handle it. I'm not good for much else anyways lol.

I'm glad your family is understanding of your new limitations. It makes things much harder when family expects more than you can do.

Nov 08, 2016 4:22 PM

I'm glad to hear that you say that you've been able to start crocheting again! Hopefully I don't have to give it up for long

Nov 09, 2016 12:59 PM

Petra, I use to be a type A personality, a perfectionist. I worked hard to keep things in total order at work and home. I once kept over 25,000 patient records in order (paper files, 4 years). Now i get lost trying to find the bill that came in 2 days ago that I've misplaced. My house is chaos too. And after 9 years of battling first one medical problem then another and another, I don't worry about other things as much. If I can't take care of me first then nothing will get done ever. (((Hugs))) 🙂💕🙏🌸

Nov 10, 2016 3:10 PM

FlappysLady81 I think a personality change is going to need to happen /currently is happening! Today I'm feeling good about it but I know I will feel different in the future so it is good to hear others saying the same! ❤️❤️

Aug 10, 2017 8:56 PM

I have had arthritis since I was 14. I'm 25 now. I've always found that talking to your teachers is a great place to start. Bring them a doctors note explaining your condition. Some teachers will give you a break. They will understand that it's not that you're lazy. And that you are trying. I have tried methotrexate. I hope it works better for you than it did for me and you're not too nauseous. All the beat

Aug 11, 2017 12:26 AM

@Petra3
I cannot imagine the pain you're going through and the challenges you face.

To others, Chronic Pain looks like an illusion. So it's difficult for others to understand. I find being transparent and working within your limitations is the best anyone of us can hope for.

I've been in Chronic Pain from age 24-36. For every person there pain is different. I know this sounds far fetched but I've learned how to cope with it. My doctor took away all my meds as a result of fear. Four patients died due to an overdose here in Iowa so they dropped most patients taking strong narcotics.

What I can say is it forced me to deal with my circumstances. I work 40 hours a week and am a father, unlike, partner, and friend. I've learned how to say no to my body when it says no more.
I space things out and when things are really bad I am honest instead of saying things like "I'm okay". People tend to see through it even with a good poker face.

I don't know how to give you best advice except to share my experiences. Chronic Pain doesn't go away for most. Meditation, yoga, exercise, and most importantly nutrition and diet helps a lot. I found fatty foods make things worse and healthy ones make it better. Also, 90% is about attitude. If you let this take you down your pain will only get worse. If you stay positive in the face of adversity you will get through this.

Message me anytime even if just to vent. We all do it time to time. It helps.

I don't know if there is a direct message feature but you're welcome to reply and I can send you my Apple ID if you have an iPhone.

Aug 11, 2017 2:17 AM

Hey Petra3! I sent you a direct message! I am 21 and in my final year of studying Actuarial Science. I so sincerely know ur struggle and would love to share my coping mechanisms.

Much love❤️
Jane

Aug 13, 2017 1:22 AM

Try dipping your hands in a bucket ice if not hold something very cold then try washing dishes in hot water as hot as you can stand and do this 3× to4× daily and eat a lot of garlic and ginger with a hot chili toddy with breakfast then another with dinner, then ahh you'll feel it! If it works great skip those nasty pills and be a natural at controlling your RA! BON APPETITE!!!😎😎😎😎😎😇🍝🍜🍲🍫🍫🍩🍨🍦

Aug 13, 2017 10:14 PM

@Petra3 welcome to our group. We are all here for eachother.
I'm sorry to hear your life Is turning against you. I understand the feeling .
I wish I can say it gets easier. But for everyone it's different .
I'm sorry your mom is going through the same thing . But happy you was able to see the signs head on

Wishing you the best in school. I hope your teachers can help you get through this

Sending prayers your way. ((Gentle hugs))

Ps just saw this post 🤔🤔 I hope you are doing well

Aug 14, 2017 11:21 AM

This is dedicated to my mom who has rheumatoid arthritis whom I'm supporting on this app to figure out some interesting solutions so I can share them with my mom and that's why I'm talking about rheumatoid arthritis it's not me but for my mom please help my mom! She could really use your help! So this is another reason I'm in this community as a team together to not just us but to help others who need us but can't have access to us who are our beloved ones who need our help,we all need you even people we know and don't really like at all to appreciate us and so we'll have more to show for! That's what this community is for in Jesus name AMEN!😇😎

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