Hello everybody my name is Kyle, I have rheumatoid arthritis which is obvious considering I'm posting here :). Anyways I'm tired of talking to people about RA considering it pretty much goes right over their head. I am currently finishing my Culinary Arts degree and I'd like to pursue a career in the restaurant/hotel business. Unfortunately, my RA is beating the heck out of me at the moment and I'm scheduled 8-10 hours a day and having to take way to many painkillers to make it through the day only to go home and sleep and wake up and do the same thing. I am currently taking Methotrexate, Remicade, and an NSAID and folic acid. Basically I don't really feel any better I limp around all day at work with people constantly asking me whats wrong with me (I'm 23 years old and look 18 so people dont believe I have arthritis and I even get bugged about it which takes away any inspiration I have for the day) I have a newborn baby and a wife I love very much. But if you met and talked to me you wouldn't believe I had a newborn beautiful healthy baby at home and a wife that loved me. My RA has taken all the happiness away from me I'm tired of limping around and in constant pain. RA took a big chunk out of my life 3 years ago when I was diagnosed, I was a varsity athlete and trained 5-6 days a week. Now I'm 40-50 pounds overweight due to all the medications I've had to take and haven't been able to lose all the weight. I've heard miracle stories about how people go back to normal after all the meds I've taken but I'm still waiting for the results. I apologize I have such a long informative post for my first one but I'm feeling down and maybe need some other RA sufferers to lean on. Please someone respond it'll make my day
YEP! Sounds very familiar. I was 26 or 27 when i was diagnosed, and I'm 33 now. People STILL tell me that I'm "too young to have arthritis".
I tell them that this isn't "old people" arthritis.. that it's and auto immune disorder and it's different... and worse. that usually shuts them up. sometimes, they'll actually ask me - and i'll explain it to them. but i hate doing it.
Some people can lose the prednisone weight when they're done with it, but I have a hard time doing so.
RA SUCKS - and that's why we're all here...stick around. It's kinda nice to know that you're not crazy. These people have helped me in that area a couple times.
Your wife - hats off to her - I dont know what I would do without my husband. Just last weekend, he was feeding me and helping me go to the bathroom. That's what love is all about. Being a supporter for one of us isn't easy.
Nice to meet you
and good luck with the culinary arts career. my husband is in that field too - hard work... long hours.. dont give up ... dont let RA kick your ass - if you can help it.
woobie
Hi Kyle and welcome to AI.
Kyle~as you can see you've come to the right place. I was 23 when I was dx'ed 12 years ago. It's been an uphill climb ever since....but not all days are bad. You've had three years at it now so you probable already understand the ups and downs of this disease. This website and others like it have been so wonderful for me. I have a large support system between caring family and friends....but there is nothing like having a group of friends that know exactly how you feel everyday. Our family will love and support us especially through the rough times; but they don't quite understand how a day does not pass that we don't think about RA. It's not something we can forget about...even though we might not have mentioned it that day. This group understands and that makes a huge difference to us. We're really glad you're here. You'll fit right in. Welcome. Lovie You will feel better when you get the right med combo. Hang in and hang here. DFWmike Hello. Congrats on your healthy baby! I had a baby this year, as well.
I think it is important to focus on all the good things in your life. That helps me get thru this, especially when I think of how unfair this disease is. Having to deal with pain everyday goes hand in hand with getting emotionally down and that in turn makes the pain worse. I know it's easier said than done, but if you find something positive to focus on (like your baby and your wife), it will get you thru the bad days. I think it's also important to have something to look forward to, whether it is hopes of new meds, or just seeing your child grow each day. For me, when my little baby smiles it makes me smile. And that is a good start. A positive attitude can go a long way. I wish you all the best.
PS - I do parafin baths for my hands, and that helps with the stiffness- it sounds like you may be able to benefit from that, too, if you work with your hands. Hi Kyle and welcome. This board is like my family. Like yours, most of my real family are far away (3000) miles so they don't really understand my daily struggles. I'm a lot older than you and my children are 30 and 26 respectively but I just got diagnosed a year and a half ago after many confusing years of misdiagnosis . Turns out I have OA RA fibromyalgia and Sjogren's. This disease plays havoc on family life because it' s so unpredictable . It's great that your wife is understanding. My husband is wonderful too but it's hard for him to realize that I just don't have the same energy level that he does and it's hard to plan vacations and times out when you never know how you're going to feel. How wonderful that you have a new baby. That must bring you great joy. I find that no matter how awlful I feel, a little exercise makes me feel better. I have a regular date with my husband several times a week at a local gym with a warm water pool. This I do after a full day of work as a teacher and I'm really tired but afterward I feel mentally better. There are young moms and dads who share the pool with their infants in water classes. Maybe that is something you could do with your new one. The warm water would feel good on those sore joints. The other thing I try to do is plan something pleasurable everyday. We rent Net Flix movies and eat with tv trays several nights a week. It's more fun than TV and cheaper than cable. Feel free to gripe here. If you do it here you won't have to bother your wife so much. You're right about people not understanding at work. Something about having this disease makes us look younger than we really are, probably the tight muscles. The people who need to know at work do, but it's selective information. Good luck . I'm assuming you see a rheumatologist; if you are, then maybe talk to him about getting a cortisone injection in your ankle/foot. I had one in the ball of my foot once and it felt like I had a new foot!! It lasted for about 2-3 months. It might be enough to get you thru this bad flare. Also, I agree with trtldy41, heat can help, too. Take care and enjoy your time with your family
I had foot problems also during the initial onset of RA but it turned out to be tendonitis in the tendon(s?) that run right underneath your foot and up behind your achilles tendon. It took ages to go away and staying off it was the only thing that helped. I think I got the tendonitis in the right foot because it was my left knee that hurt so badly from the RA and I was favoring it, thereby putting more strain on the right side. The methotrexate kicking in is the best thing to help everything feel better. I also had tendonitis in my right hand that was pretty severe. It was a tendon along the top of my hand up to the middle finger base. The nerve endings in that finger were also affected and I had a tingling sensation in the top joint of my finger for months. Hurt like crazy and the splint for carpal tunnel syndrome was a godsend. It did eventually all go away. I had a cortisone injection in my knee one time and it was VERY effective so that is definitely something to ask about. I'm now on mtx shots, folic acid, plaquenil to hold the RA monster at bay, 3 years into the journey. Good luck.
I'm sorry to hear that your going through a rough spot right now. I admire you for helping out at home even though you're in pain. You sound like a good husband and father.
I know what you mean when you talk about family not understanding your pain. I have to patiently explain to my children what I need from them and how they can better help me. They help as much as they can. Others in the family(sisters) can't understand how I can be in so much pain and need to take pain killers still when one of my sisters with RA doesn't take as many pain killers. It's frustrating.
Congratulations on the new baby.Take care of that new family but don't forget to take care of yourself too.
I know what you are feeling. I am much older than
you are, but have been diagnosed for a little over a
year. My first flair really wiped me out and had me
out of work for 3 weeks at one time. I thought I was
going to die..I take mtx, remicade & folic acid, and
prednisone. I have to say that it took a while for me
to really feel the effects of the meds (other than the
pred which helped right away) I started noticing the
help from the mtx about 3 months ago and really
noticed the difference with the remicade about 2
months ago. I gained a ton of weight with the meds,
and hope that now that I just quite taking pred that I
will be able to loose some.
Hang in there and com back often. This place has
really been a sanctuary for me.Thank you all for your kind words. I still don't feel very well and this week I only got scheduled two days and it got to me because it's because my boss' boss just thinks I move slow but it's because how bad my RA is at the moment. I just wish I could have a few good weeks so people at work can see how good of a worker I am. I don't feel very well still, I feel down and out wish I could sleep but I can't. I'm going to do my best to take yalls advice and try move on and be positive. The problem as you all know is this disease is such a grind, never goes away can't get over it like a flu or train and build muscle and you'll feel better. Many days I wake up and can barely move and still get myself to work I wish my boss' knew how hard it was for me and the effort I put forth to make it to work each day. My best goes out to all of you and I hope you all feel good in the morning thanks for your thoughts I am going to try and sleep now. by the way my biggest problem is my ankle/foot it feels so painful sometimes it feels like its broken or badly sprained and it's been like this maybe 3 months? has anyone else had something like this? if so how did you make it better? this is my main problem at the moment. [QUOTE=KyleC] by the way my biggest problem is my ankle/foot it feels so painful sometimes it feels like its broken or badly sprained and it's been like this maybe 3 months? has anyone else had something like this? if so how did you make it better? this is my main problem at the moment.[/QUOTE]
I've had that problem too in my ankles and in one knee.It was mostly the knee that I had trouble with. Just the slightest twist was enough to cause severe pain to the point I couldn't put weight on it. I usually rested the knee and put on heating pads. This was a recurring problem and what really took care of it was methotrexate. I haven't had that bad of a problem with the knee since but the ankles will hurt every now and then.
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