This is my first venture into posting messages, but I was just diagnosed last month. Been reading all I can about RA and trying not to freak out! Started weekly injections of methotrexate 3 weeks ago - no improvement yet. I get through the day with Relafen and Darvocet. Prior to November of 2004 (when I turned 44) I was still roller blading and riding bikes with my 10-year-old daughter. Now I hobble around like an old woman! If you're as old as you feel, I'm 102! Even my jaws hurt! I'm finding all of the info on meds and diet VERY frustrating and confusing. I wonder about the diet stuff, but wonder more why, if it's diet-related, would it come out of the clear blue sky? I'm kind of a "people person" and would appreciate all the support I can get from people who really understand! Thanks.
Hey Sandy,
I just found this website this past week and have already found lots of encouragement, support, but also helpful hints and medication information. I'm like you in that prior to my daughter's birth in 2001, I was rarely ever sick, power walking 4-5 miles 3 times a week and weight-lifting 3 times a week. Then over night I felt like my body just shut down. There are days I look in the mirror and wonder who this old woman is. The meds and diet are incredibly frustating as is the constant fatigue and pain and the guilt that comes from not being the kind of parent you want to be. Hang in there.
Becky
Becky,
Thanks so much for responding! So, you have a little girl -- wow. To me, that makes it much harder. I keep thinking "Why couldn't this disease just have waited till the kids were grown?!" I tried to explain it to my daughter, and she said, "Mom, I don't want to talk about this!" I think my husband and both kids are in denial. This will be a huge adjustment for them because up to now, mom has done EVERYTHING, and now she can't. Have you found that your diet has any effect on your symptoms? What meds are you taking? There's a shortage of Methotrexate injectable right now, and I so do not want to take it in pill form (because I'm not into nausea!) What kind of exercise (if any) do you do now? My feet really hurt and my knees are swollen. This seems like a bad dream, doesn't it?
You hang in there too! What choice do we have?Hi Sandy,
Just want to tell you to hang in there. You are not alone.
What you are experiencing and feeling is quite normal for a person who has just been diagnosed.
26 years ago I was in the same boat you are in now. I was a very active person who downhill skied, played volley ball and tennis, and took exercise classes regularly. Then one day it was extremely painful just to move and get out of bed. I was diagnosed with rheumatoid arthritis at age 32. I felt at that time that my whole world just fell apart. I cried and asked why me. However, I'm here to tell you that 26 years later I'm leading a fairly normal life or as normal a life a person with active rheumatoid arthritis can live. It hasn't been easy and it is still a constant fight(flares,fatigue,drugs that don't work). My rheumatoid is being "controlled" by a myriad of drugs now and I have a great Rheumatologist who understands me and is willing to work with me. I still downhill ski, walk and take PACE (People With Arthritis Can Exercise) classes regularly.
I think the best thing you can do is educate yourself on the disease and go to a Rheumatologist who will work with you and help you maintain as normal a life as possible. Stay a way from any Dr that tells you that you just have to learn to live with it(been there).
Take Care
Hi Sandy;
I know it is hard and frightening, I was diagnosed 4yrs ago with Ra and this past year with oa and pa, so I am fighting on 3 different lines of defense, Mtx will take a little while to take effect. i don't know what kind of insurance you have but depending on that, if the Relafen does not help the rd will go to the next med and try that. Hmos require your dr to use several different meds before they will allow you to have enbrel, Humira or Remicade which work well with the mtx. I take enbrel shots twice a week and they are helping. I am not in as much pain as I was last year. I am still very active I have learn to keep going, you just have to learn not to over do it. Just remember that you are not alone that we are here to help each other and to let someone lean on us when they need to. I got big shoulders so lean on and remember to give your meds time to work, they will need to be adjusted and tweaked in order to help you. If need to, keep a list of what is going on so you can let the dr know what hurts etc and to answer what questions you have. Take care and please remember you are not alone. Meme
You are not alone! I think that most people with RA know exactly how you feel. I had instant relief with the steroid Prednisone, however I don't think that you would want to take it for long periods of time. I took it long enough for the Methotrexate and Remicade to kick in. I strongly recommend that you see a Rheumatologist if you are not already.
Good luck,
Allan
Bobby
Hello everyone....just responding to your questions as to what meds I'm on....I'm on 400mg Plaquenil, 20mg prednisone, and 20 mg methotrexate (injectible). I'm also on painkillers unfortunately. My primary goal right now is to find a treatment or blend of treatments that allow me to reduce the prednisone and painkillers and achieve some sort of balance back into my life. I was doing oral methotrexate and actually had very few side affects once my body adjusted to treatment. The first couple weeks I was nauseated, but didn't have a problem after that, same thing happened when I switched to injections.
I'm not doing a lot of exercise which is my greatest frustration. I've tried everything from gentle walks (used to be a hard core power walker) to aquatic exercise classes (I'm an ex-lifeguard) and have found that I spend 2-3 days in bed after even the most minimal exercise. My rheumy says I need to get inflammation back under control as I'm seriously flaring right now. SO hang in there with the exercise.
My kids ( 3 and 5 years old) have been amazing. My daughter has never seen me healthy as I got sick while pregnant with her. HOWEVER, when I'm seriously losing it because I'm so exhausted and both kids are driving me crazy, and I have to apologize because I yelled or didn't respond like I normally would, these beautiful children put there arms around me, give hugs and snuggles and say...we forgive you mommy. My 5 year old tells me all the time....you can have a nap mommy, you'll feel better if you do, and we can be good while you rest. GOD is so good...and I'm so glad He blessed me with Randal and Raelyn my little angels.
HANG IN THERE EVERYONE.
Becky
Try some stretching exercises they will help, the kind I am talking about is easy stretch, take a towel, because i know it is hard to do the normal bends, hold an end of the towel in each hand loop it over one of your feet, hold your leg as straight as possible out in front of you and pull the ends of the towel towards you while pushing away with your foot do this about 5 times per foot or what you can handle. Take the the towel in both hands put your arms above your head stretch to the side holding towel taught in your hands, this can be done while sitting in the chair do this several times on each side. I know it is hard but if you can do little exercises like this it does help. I have been there and know what the pain is like. This week I over did it and I am paying for it with a bad flare up. A jacuzzi is very good for your circulation too. Becky even if you can just walk around the block even once that is good. I know it is hard to see yourself not able to do what you could do before this all happened, it is hard and it is devastating, you can't understand how this could happen to you ,but it does. Athritis is not picky it will take whoever whenever and we have to learn to adjust our life around it. It is not fair,but unfortunately we don't have much say in it. Sandy, Becky, and all our newcomers, my heart goes out to you, I went through this and know all the fears and anger you feel, I am learning to adjust, but there are days I want to say I quit and go hide in bed, but I know I can't do that, each day passes by I realize how important it is to keep fighting and to keep going, please give yourself time to adjust and you need to vent come and vent hear we wil all listen and we will all care. Take care Meme
PS Cehck for a yoga center in your area they specialize in a yoga seesions for people with athritis, it seems to help.
Thanks Meme,
I'll definitely try the towel stretches, they sound like they may really help at least keep me mobile. I'll let you know how it goes.
Becky