Last post Fri, Jun 13 2008 4:39 PM by Becks. 40 replies.
I don't know what to expect right now. As I said im 17 and this is my last year in highschool and i have no energy at all in order to have all the fun with everyone else. I'm taking methotrexate and enbrel, the shots scare me a lot. I'm not quezzy or anything, but it is the fact that this will be with me for the rest of my life. I'm sore everywhere, right now im haveing major problems with my knee's, my left leg wont bend, and i haven't been able to bend or use my wrist properly for over 8 months. What kind of exercises should i do? What should my diet be like? What should I talk to my doctor about? Will my life always be painful?
Please someone, anyone, what am i to expect?
Oh man, I am so sorry you're going through all of that. Does your doctor have you in physical therapy? that is the first step. You'll have ups and downs, good days and bad. We can't tell you which exercises to do, but you should definitely be in therapy. Good luck!
"People who think rape is about sex confuse the weapon with the motivation."Alice Vachss
I know how frustrating it is at 17 to have arthritis. I developed coriatic arthritis when I was that age, my type travels to where ever it wants. I have had it in my heals toes knee's, shoulder and elbo. My sister has had juvenil arthritis since she was seven, and my dad has had ostioankalitisspondalitis(I think that is how it is spelled.) Any way from all of my experiance the worst is always the first little while. After a period of time that is undertermined things usally get better. I don;t deal with mine any more or at least very little, my sister has learned to cope farely well and at 28 play's on a local softball team, and my dad is as active as ever with only the occasional sore back. When I was 4 he was told that he would be in a wheel chair within a year. That was 26 years ago with that never happening. As for me I am dealing with arthritis again due to a severly broken ankle and I am not to concerned about the arthritis portion of my problem, but more about the posible fusion or loss of it due to a below knee amputation.
Regaldless of what happens keep having hope things will get better. They will one way or another. I remember crying in the shower because it hurt so bad to stand and shower.(which at 17 or 18 any guy should never have to deal with.) So it will get better just give it time.
I'm so sorry you have such a painful condition to live with. It is sad to me to think of you going through this at such a young age.
My mother has RA. She was diagnosed later in life but was in horrible pain for years and developed bone spurs and cannot straighten her arms today. She says at first she was a walking pharmacy. She had quit taking alot of the meds one by one and eventually took only Methotrexate. She does not know why but after about 10 years of severe suffering in her body it stopped. We couldn't get her to eat healthy, exercise or take supplements. She just suffered. She has far more energy than I and even than many healthy people today. The post about it getting better after some time is evidently what happened to my mother. That is encouraging to me as my last RA test was positive.
Also, I agree with Liesl about PT. It is very important to see a Physical Therapist and keep your joints as active as possible without overdoing it.
I think as with any chronic pain sufferer it is vital to keep the hope. Without hope we despair. I wish you the help you are looking for. I wish for you some pain relief and good days.
Take care,
Sherry
Hi. I have arthritis caused by Lyme disease. I would suggest you research and talk to your doctor about the current thought among some medical professionals that RA is a bacterial infection. My dr treats RA patients with Minocycline and has gotten excellent results with a number of his patients. There is a Yahoo group for Rheumatic illnesses which you should check out. Those people are dealing with RA and similiar diseases and can recommend good doctors or good articles to read.
I've heard wheat and corn can bother people with arthritis. Maybe eliminate one at a time from the diet for a couple weeks to month and see if you feel any different. Also I would recommend water therapy if you have access to a physical therapy place with a pool with temperature around 93 degs. There is an arthritis pool class in my town which I love going to. Also you might look into getting an occupational therapist as Voc Rehab sends one to my home and teaches me how to do things better despite my disabilities. Its hard to explain what an OT does, but I love mine she is so kind to me and helps.
hi im 13 nearly 14 and ive got juvenile idiopathic arthritis and had it for 10 years nearly 11. i understand how you feel with not being able to have as much fun beacause of pain. i was on methetrixate for 2 years and it got me really depressed and scared of needles, but my doctor sent me to birmingham and i got started on enbrel and am now doing it myself and a little happier. i find it really hard to face that i may never get rid of this disease and it scares me. i talked to my parents and the rest of my family and even friends and there endless support helped my through it. (well only my latest friends, because some people are mean and cant be bothered to even try to understand the pain in which we have to go through and the constant change in medicane, so they bullied me, but now ive got new friends that are loads better) i hope we can chat, i know there is a big age difference but i feel alone in the world, even though there are so many people around i do not know anybody else with the same disease as me and its that that makes me feel alone and the only person with this diesease
xxx jess xxx
I want to start out by saying thank you. Your reply has really helped me out. I understand what you mean by people bullying and being rude and the difficulty we face trying to explain it with others. I do not know how you managed going through all those years in pain especially at an even younger age then me. It's difficult to imagine. I've always thought and its not meant to be a bad thought just an abstract one. But hmmmmm . how do i word this.....Those with cancer, depending on which, know that there is a hope of a cure, a reason as to why , and how it came about, whether it is genetic, or chemicals, but with arthritis its so vague.... doctors seem to even have a hard time to identify the cause....yet so many of us have it. I really wonder why that is? I hope we can continue chating because just being able to relate and express the situation at hand. My name is melissa, if you ever just want to chat thats cool with me because i only have 1 friend. and thats it. I have a boyfriend of 3 years and he's gotten me through all my ups and downs.
I hope you have a wonderful day and thank you agaoin
~melissa~
I have RA symptoms and understand your shock, it does not matter how old you are it just hits people with out due regard, but being 17 I gues you quite scared at the way it has effected you I can simply say your not alone and at times when you feel you are just look to this site. It is amazing how people cope with adversity one of the benefits of being young is you have a lot more strength then most, its importand to keep that strength, and maintain a good diet.
and Welcome to disaboom
hey bro, I know how u feel Im 21 and i am guy that was over weight i was about 386 pounds im 2006. I started to workout slowly then i feel in love with working out and started to workout 2-3 hours a day 5-6 days a week then on the weekend i would go on 50 mile bike rides to loss the weight faster but of course it took some time to get to that level in december of 07 i got down to the weight of 205 with a large muscle mass i was at a incredible fitness level higher then my doctor could ever even believe. This year in april i started to get feet pain then started to get pain in my right knee. I kept working out just like normal and just fought through the pain. till one week i just could any more i could even walk i was taking about 6-7 vicoden just so i could walk around in my own house i couls even go to work. I fell into depression and was very sad the whole time that i was at home on disablility. im not gonna lie it is horrible and i know your scared because i was to. i have been looking into it alot and it scary to think ill be this way forever. But honestly the only way to fight it is to get out there and fight though the pain. Dont go out and try and work out like crazy but go for a walk or sit in bed and try to rotate all the joints that hurt even if it hurts so much that u wanna cry. just fight it. I finally told my self that it is not just gonna get better i said fuck it and stopped using my wheel chair and stopped cruches to get around i made myself walk even if it was painful. I mean i know it would be hard to do this because it was but i have been through worse. I hope for the best for you and for every one like us that have RA. i know that im not gonna let this keep me down anymore im gonna get back to the gym and start all over again like i did before from the bottom up and we are lucky that we actually can because we are young and can fight it better then older people sorry to say. I know this is long but i hope it helps other people in the same situation that i am in "Fight the RA".
Check out Vitamin C injections online.
For you younguns' scared of needles, can I offer a suggestion? Part of the fear is the anticipation of the injection. You tense up and that makes it really hurt more. My mother was an ER nurse for more years than I can remember and she had a trick she'd use with younger folks. You can do it without a nurse coaching as well.
Take a nice easy breath... not a real deep on, that makes you tighten up some. Blow it out slowlyyyyyy through your mouth and at the same time, put yourself anywhere but in a room with a nurse and needles... in your head. When I was getting injections in my spine, I'd think of this one grassy meadow near Yosemite National Park I'd been to when I was a young adult. Also having a IPod to play your favorite tunes before you see the nurse to put you in a different frame of mind helps too.
Don't let the pain dictate to you and make you someone you wouldn't want to be around. I know it's hard, especially when you are young, but always try to look forward. Several of the members here have taken their disabilities and advocated for others who have the same problem, or just advocate for the disabled in general. Look into seeing if you can help that way... those are the people who really understand what you are going through.... and you can learn how they dealt/deal with it.
It breaks my heart to see you kids hurt so much as such a young age. Fortunatly for you though, there is much much more research being done and much better understanding of RA. Get yourself active in an RA group where you are, it can't hurt to see what they offer, and you could help new RA people too. I wish you all the best.
Hey there. I just want to let youknow that I have been dealing with RA my whole life. My mother had it to such severity that she was in a wheel chair from the time I was 8 years old.I had to watch first hand the pain and suffering that she had to go through. I also watched from a very young age, the way the doctors treated her like a guinea pig trying out new drugs. It was something that I have learned to live with and watch until she passed away in 2004.
I was diagnosed with RA a year ago and it hit me so hard that I couldn't walk and I had to use both hands to turn the door knob to get into the bathroom. I had no idea what was going on. I was scared. I went from 195lbs to 150lbs in about 3 months. The doctors that I went to were more worried about getting me out of there office with a fist full of perscriptions, than they were figuring out what was wrong with me. Finally after 5 doctors, one thought that I had arthritis(even though I asked the other doctors if mabey it was arthritis) and sent me to a rheumatologist.
It has hit me in my entire body. My hands and wrists are the worst. Elbows and shoulders next. Knees not so bad, but still swell up like beach balls when the weather changes. (I always thought that it was an old wives tale about feeling the weather changes in your body). I'm not a big believer in perscription drugs, so I went a different route. I found an Ayurvedic doctor who provided a great deal in the way of my recovery. I have learned a lot about RA in the last year and what happens to the body.
I'm 36 years old right now and never thought that I would ever feel pain like this in my life. I went from working out 5 days a week bench pressing 225lbs to barely being able to raise my hands over my head.I have had a big change in my life, along with it came the depression, confusion, disbelief, and the unknowing of what was to come. I do want to pass on some information to everyone that has RA. Just from what I have learned about how to deal with the pain and loss of mobility.
Being 17, you have just started out in life and have a battle that no one else can even comprehend, not in their wildest dreams. the first and formost thing that I want to tell you about that gave me more pain relief and made me feel soooooooo much more like fighting through the day is yoga. I was told that it has dramatic results on the symptoms of RA. I thought that yoga was for wierdos and housewives that had nothing better to do with there time. Real men work out in the gym with weights!!!!!! Let me tell you, start taking yoga. It has been a huge eye opener for me. It's hard and for the first little while it's hard to get through. But the rewards far exeed the work. This is by far the best thing that has worked for me.
The other things that I want to share is the diet. This was a hard one for me swallow. I love meat. I can eat steak and eggs everyday if I had the choice. The first thing that my ayurvedic doctor told me was to go on a straight vegetable juice diet, and if I was hungery, to fill up on vegetables, raw preferably. I gave in and that was the first stepping stone to getting better. I stayed away from all the night shade veggies,(potatoes,tomatoes,peppers,onions)and that really seemed to bring down the swelling in my joints. Never thought that I would become a vegatarian, but it is helping out tremendously. Diet is a huge factor. No more soda pop, beer, alcohol, junk food or any processes food of any kind. Absolutely no fast food,McDonalds, Wendy's ect.... Changing my diet helped imensely. The vegetable juice is a challenge. You go through LOTS of vegetables juicing. I went on a quest for a better juicer and found it. It's incredibly expensive but worth it's weight in gold as far as I am concerned. It's called the Norwalk Juicer. WOW!!! It works like a dream and is so easy to use.
The supplements that you should be taking are of great importance as well. 6000iu of Vitamin D per day. 2000 of Vitamin C, 3000MSM & Glucosamine. I really noticed a big difference in the pain and swelling. I'm also taking Methatrexate to keep the joint from being destroyed(at the request of my ayurvedic doctor). I hate perscription drugs, as I have never seen anyone ever cured by using perscription drugs. the side effects are far worse that the cure they are supposed to have.
I have a lot more that I can share with anyone that is interested. I have spent the last 7 months getting chelation injuections and searching out a cure for this dis-ease of the body. I don't believe that it is incurable. I believe that if you have the right key, you can open the door. Detoxing the body so it can heal itself is most important. I can ramble on for hours and bore the hell right out of you, but this is the most benificial of actions that I have found to work.
I went from being folded up like a chunk of paper, to being able to walk the dog , get up in the morning and get out of bed in less that 20min of pain and agony, walk stairs again and i am going to return to work at the end of the month. Iam not cured yet but I will be. The pain is still there and I still have a long way togo but as long as every day is a little bit better than the day before. There is a cure for RA. It involves a lot of hard work and changing your lifestyle or creating a new one. One day at a time.
Hello Peace. I'm sorry to hear about all you are going through. I don't have RA, but I am a nurse and hopefully can offer some helpful suggestions. First of all, are you seeing a regular physician or a rheumatologist? A rheumatologist would be a better choice for you. It sounds like your medications are not working. The Enbrel and the methotrexate should be helping your symptoms. Perhaps you need an adjustment to your dosage or a change of medication. The rheumatologist, or a dietician or nutritionist, can help you with diet questions. Have your doctor refer you to a physical therapist. They can help you improve or at least maintain your range of motion. They can also show you some exercises you can do yourself at home. A hand therapist or occupational therapist can help you specifically with your wrist problem.
I think you need a team approach (rheumatologist, dietician, physical/occupational/hand therapists) to help you get better. Good luck to you. Be your best own patient advocate and if you don't get the help or answers you need, find another doctor!
Becky
I don't have RA so I don't know exactly what you are dealing with. My heart just went out to you from you post. To be so young. I do know what it is like to be in constant pain, weak and unable to enjoy the same life as my peers. I've fought Breast Cancer for 8 years and over time have gotten into a state of chronic fatigue. I try to keep myself in shape, but basically what I manage is small walks and Isometrics. I do have Degenerative Arthritis due to dancing in my youth. In my spine and legs. The doctor said it was the worst they had ever seen in a woman my age. I also know the fear of the unknown. You were smart to come here and post. Keep looking. The Internet is a great resource for information and support. And information is one of your bigges allies. Doctors like patients that work with them in a team mentality.
If you can find a way to help others you may find some meaning and reward in all of this in time. I would encourage that too. It has helped me immensely.
I really do hope you can stay as well as possible.
hello out there...!!!! my body is riddled with arthritis. for myself i was told to try water erobics. you don't have the pressure of your body weight when your moving around. if you have access to a pool, give it a try. to out smart this decease as everyone has stated moving around is a goal. i worked in the health care field for well over 20 years. you can come up with your own program with time as i have. there is no right one answer for every body. the parts of your body that give you the most trouble can be dealt with. i am alot stronger than before, much more plyable. and alot less pain. increases your quality of life, equals alittle more peice of mind. i should have worked another 10 years, and here i sit. i am a work-a-holic, i loved working with the dis abled- and the handi-capped. now i am one of my clients. yes it is the pits. when i get depressed, if i talk to my daughter, she lovingly says, mom...are you having a pitty party?? i get so frustrated that i get dressed and head down to the pool. reverse phyc. she makes me mad but it works. drop in any time. respectfully erika simpson
