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lglavish
Posts: 12
:happy: Tell us about your RA, meds, weight, or whatever you feel comfortable with.
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Hello, my name is Charlene. I'm 59 yrs. old and although I don't have Rheumatoid I do have Osteoporosis and Osteoarthritis. I have to take Fosomax for my bone density and 4 Aleve daily. My right knee is bad and as of right now I get cortisone shots to keep comfortable, it won't be long before I will have to have it replaced. I had lost 50lbs but gained 10 back and I'm sure it's because I don't exercise. I have a treadmill and an exercise bike sitting upstairs gathering dust. The doctor has told me these are both good exercises for my knee but because I've been sedentary for so long I have no energy and I can't get myself motivated to do anything. Any suggestions? I keep telling myself I need to do it for my health but I still sit around. Help please.0
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I joined the group because my mother has had RA for almost 10 years. She has used several meds from plaquenil to embrel. Embrel was the best one according to her. She is now off the shots because she is currently being treated for breast cancer. I joined your group to learn from you and be a better supporter for my mom.0
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Hi Charlene
I absolutely understand your desire to NOT exercise. It is so difficult some days. But as you know, the exercise will help you stay flexible as well as lift your spirits. Honestly, I have let myself go for so long that I am back to exercising just 15 minutes a day for now. I am working full time but I exercise on my lunch hour. I looked up a beginning walking video on you tube and I do my walking that way. The time goes quickly and my attitude is definitely better afterwards. I hope this helps but I understand if you don't feel up to it.
Take Care!0 -
What a wonderfully thoughtful thing for you to do for your Mom! My family is still so afraid of the disease that they don't want to deal with it. They are very understanding but I still don't think they "understand" the disease and the mental toll it can take on us. The fact that you are "there" for your Mom makes a world of difference. When I am having a bad day my kids are good about doing some vacuuming or other helpful things around the house. There is nothing as frustrating as not feeling up to moving and seeing that there are fuzzies on the carpet that need to be picked up. Mentally, that is a huge help!
Keep up the love!0 -
I joined the group because my mother has had RA for almost 10 years. She has used several meds from plaquenil to embrel. Embrel was the best one according to her. She is now off the shots because she is currently being treated for breast cancer. I joined your group to learn from you and be a better supporter for my mom.
That's really rough, I take Enbrel too and I can't imagine how it would be if I needed to stop. Thanks for joining!0 -
Hello, my name is Charlene. I'm 59 yrs. old and although I don't have Rheumatoid I do have Osteoporosis and Osteoarthritis. I have to take Fosomax for my bone density and 4 Aleve daily. My right knee is bad and as of right now I get cortisone shots to keep comfortable, it won't be long before I will have to have it replaced. I had lost 50lbs but gained 10 back and I'm sure it's because I don't exercise. I have a treadmill and an exercise bike sitting upstairs gathering dust. The doctor has told me these are both good exercises for my knee but because I've been sedentary for so long I have no energy and I can't get myself motivated to do anything. Any suggestions? I keep telling myself I need to do it for my health but I still sit around. Help please.
Hi Charlene- I totally understand the no energy/motivation. I'm not a big excerciser and I don't want to go to the gym. We did buy an IPool which has been fantastic. It is set up in the garage and heated from 90f to 96f all year. It has a tether and belt so one can swim in place, or sometimes I just soak. It's by a little company called Fitmax. The link is below. We've had ours 2 years and had no problems. We did change out the pump for a bigger one though. I think for everything including the new pump and the hard wiring it probably cost us around $2500. I like to soak when there is snow outside and open the garage door.0 -
Thank you. I will have to look into that pool. My husband wants to put a pool in the backyard but they are so expensive. Swimming is one thing I think I would do, it's fun and doesn't feel like exercise. My doctor is so sweet she tries so hard to find ways to get me motivated, I finally told her about the only thing I like doing is dance. I would so love to be able to Zumba, I think it looks like so much fun but I know my knee wouldn't make it. She did suggest finding an aerobics class that might be able modify things for me. Something else I guess I can look in to. Then again it takes motivation to do that. I wish there was a magic pill that would give me energy.0
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I have RA, im the only one in my family with RA. Ive had symptoms since i was 25, was dx when i was 27 and im 35 now. I took meds for a few years. Started methotrexate, then added embrel, then stopped embrel because it didnt work, then did methotrexate with humira, only a slight change in bloodwork. so then tried to add steroids and those made me sick. So then stopped it all and went to the infusion Orencia. OMG that was the worst year ive ever had. Those infusions made me so sick to take them, from about 5 mins after starting to a week after i got the infusion i was in bed/couch sicker than a dog, throwing up and sweating, etc. Then i caught every single thing that went around. Cant get a flu shot on it so i got the bad flu virus, i wished i was dead everyday i woke up those two weeks it took to feel better. I caught every cold. The year i was on orencia, i left the house about 25-30 time TOTAL that whole year. between being sick from the infusion and then from catching everything, i stopped taking meds so i could enjoy my life again. I hurt all the time now, im so tired i 'rest' most of the day, especially if im trying to do some housework. My husband does most of the cleaning, cooking, etc. I dont even drive alone, and rarely drive at all anymore because it hurts my feet/toes so bad to use the pedals and my fingers/hands are in constant pain. But...i can actually leave the hosue if i have time to rest up before i know i have to leave and can rest up after i come home. and when i say rest up before and after, i mean a couple days of doing nothing. but its better than on meds, i dont wake up wishing i could die everyday now. Im actually able to take part in my daughter's life, she's not staying weeks at a time at friends houses.
I know one day ill have to go back to my 'unlife' of meds, but im trying to wait till daughter goes to college in 2 years. I want to lose some weight so ill feel better and my joints wont have to work so hard, but of course exercise is difficult.
glad to be a part of the group and find the support of those who are going thru the same issues.0 -
Hi All,
I'm 38. Got diagnosed with RA in April 2009, when my first born was 18 months old. I wanted to give him a sibling so I didn't take any drugs until after my daughter was born- which wasn't until May 2011. During that time, I took 5 mgs of Prednisone to help me function and I actually ended up taking that for about 3 years.
I'm now on Methotrexate and Enbrel. I'm quite lucky in that my weight has not been effected by the RA and despite pain in my ankle/foot, I can exercise (but I don't run anymore). I'm 5'4 and my highest non pregnancy weight ever was 158 but that was years before the RA. I am now about 135 and that's just fine for me.
I am sorry so many of us are dealing with this painful disease. I have to go back to the Rheumatologist this month and she's never been very satisfied with my level of pain so I know she'll talk to me about Orencia. I work FT and have two small kids so I really can't have an experience like Alliwan described (that doesn't sound right but my husband works nights so I have to be 100% to care for my kids and work) so I do work out (doing lots of strength) to keep my body strong- I have a ways to go to get it as strong as I'd like it but I'm just happy I'm able to do the work outs.
I'll look forward to getting to know you all.0 -
I have RA, im the only one in my family with RA. Ive had symptoms since i was 25, was dx when i was 27 and im 35 now. I took meds for a few years. Started methotrexate, then added embrel, then stopped embrel because it didnt work, then did methotrexate with humira, only a slight change in bloodwork. so then tried to add steroids and those made me sick. So then stopped it all and went to the infusion Orencia. OMG that was the worst year ive ever had. Those infusions made me so sick to take them, from about 5 mins after starting to a week after i got the infusion i was in bed/couch sicker than a dog, throwing up and sweating, etc. Then i caught every single thing that went around. Cant get a flu shot on it so i got the bad flu virus, i wished i was dead everyday i woke up those two weeks it took to feel better. I caught every cold. The year i was on orencia, i left the house about 25-30 time TOTAL that whole year. between being sick from the infusion and then from catching everything, i stopped taking meds so i could enjoy my life again. I hurt all the time now, im so tired i 'rest' most of the day, especially if im trying to do some housework. My husband does most of the cleaning, cooking, etc. I dont even drive alone, and rarely drive at all anymore because it hurts my feet/toes so bad to use the pedals and my fingers/hands are in constant pain. But...i can actually leave the hosue if i have time to rest up before i know i have to leave and can rest up after i come home. and when i say rest up before and after, i mean a couple days of doing nothing. but its better than on meds, i dont wake up wishing i could die everyday now. Im actually able to take part in my daughter's life, she's not staying weeks at a time at friends houses.
I know one day ill have to go back to my 'unlife' of meds, but im trying to wait till daughter goes to college in 2 years. I want to lose some weight so ill feel better and my joints wont have to work so hard, but of course exercise is difficult.
glad to be a part of the group and find the support of those who are going thru the same issues.
Welcome- I'm so sorry to hear about such a tough time with the meds. There are a new group of meds for RA up and coming called Janus kinase inhibitors (JAK inhibitors). The first on the market will be tofatcitnib which has been approved by the FDA. However the one I am watching with much excitement is one that only inhibits JAK 1, and seems to have a much better safety profile than the others. It's called GLPG0634 by Galapagos. Anyway I guess I'm trying to say hang in there as the new drugs in the pipeline are very different from the current biologics. Have you thought about taking part in a clinical trial?
Hope you have some pain relief soon.0 -
Hi everyone,
My name is Bobbie and I have had diagnoised RA since 2005. It took a couple of tries to get there as my blood work would show up normal. I went to the doc the day after Christmas as I couldn't hardly move when I got out of bed. Luckily the doc I saw at my clinic has RA herself and diagnoised it herself. After the blood work came back positive I was referred to a rhumatoligist. I spent 4 years on steroids and gained 40+ lbs. I had lost most of it. I started taking Enbrel and improved so much I went off of it for a while. After several flares it was decided I should go back on the Enbrel. I was on it for close to a year and started developing MS symptoms. Spent severl months and several thousands of dollars to be told it was a rare side effect of the Enbrel. Stopped taking the Enbrel. I am wanting to get healthy again so I have started to eat better and exercise more. I have found on chilly damp days I want to wrap up in a blanket with a book and a cat so I try to "make" myself walk all thru my house upstairs and down.0 -
Hi,
My name is Heather, a british wife and mother of three. I was diagnosed 2 years ago at 42 with serum-negative RA and was started on Methotrexate and Folic Acid (tried steroids but gained a load of weight). Up until recently it has worked really well, but just started a flare in the last week. I'm hoping to lose about 70lb but have been on 1500 cals for over a year and only lost about 12lb. I have just dropped back to 1200 in an effort to get things moving again. My main pain centres are wrists, knuckles, elbows and, more recently, ankles and feet. My Rheumatologist offered me a course of pred to beat back the flare but I have turned him down as I put 10lb on in two weeks last time I had them. I'm just hoping that being sensible with my exercise and eating will cut down the flare time.
Nice to know I'm not alone out there!
Heather0 -
Hi all!
I'm 24 years old and I just got diagnosed in September. Apparently I have sero-negative RA so it took a while for a doctor to diagnose me. . I also have Celiac (diagnosed 3.5 years ago) and FIbromyalgia (diagnosed in December 2011). I'm currently taking methotrexate injections twice a week and folic acid for my RA (plus a whole bunch of other things for my other conditions) and it actually seems to be helping a lot. I feel so incredibly lucky. But I still have a lot of pain - especially in my hands.
I'm only 5' tall and about 25lbs over what a healthy weight for me would be. I'd really like to lose that weight and feel like I have some control over my body and what it can do. But sometimes it's so hard to workout or eat right with the pain and fatigue. I think the hardest thing for me has been trying to find workouts I can do that don't make me hurt but still burn some good calories and build muscle. I'd love to start swimming but I can't afford a gym membership to the gym that has a pool right now. Maybe next year?0 -
Hello Everyone,
My name is Holly and I am a 26 year old mother of one happy little 2 year old boy. I was diagnosed with RA in May 2011 after a bit of research on the part of the doctors. It seemed to come on so suddenly.. I was fine and all of a sudden I couldn't move my hands they were in so much pain I went into urgent care. It is there they found my elevated sed rate of 89 and chose to send me for an EMG which proved bi-lateral carpel tunnel. With the sed rate and bi-lateral carpel tunnel they decided it best to send me to a Rheumatologist for further review, I did not and still do not have the RA factor in my blood, but am always inflammed. The Rhuematologist did an ultrasound on one of my hands and was able to confirm RA (Says I test positive for Lupus, but have no symptoms of it).
I was originally prescribed methotrexate pills, predinisone and folic acid. Eventually the dropped the predinsone and added plaquenel but when those did not work they pushed me up to methotrexate injections along with plaquenel. I did the injections for a while and found that i actually felt worse when on them so I stopped completely. I have recently begun to try plaquenel again and we are seeing if that is what was making me feel worse. Lately I have been very stiff and in a lot of pain, but the weather has not been the best either.. its amazing how much that impacts.
Recently I have decided that I really need to take charge of my weight. Since the diagnosis, I have gained so much weight and I was already overweight in the first place. I need to lose about 100 lbs to get to my ideal weight, but will settle for losing 70-80. I have made a substantial change in my diet recently and make it a point to walk 15 minutes every day. Any other form of exercise is not an option, as most of you probably know. My main goal is to become a healthier me so that I may enjoy time with my son as well as be healthy enough to conceive again.
I look forward to getting to know you and taking this journey together.0 -
Hi my name is Jayme!!! I am 20 years old I was diagnosed with JRA when I was 8. As long as I can remember I have struggled with my weight, it has been so frustrating. My RA currently is in remission and no longer responding to the meds I'm on (Methotrexate, Celebrex, Plaquenil, and Folic Acid) My doctor is getting ready to start me on Actemra, (anyone else take this??) Trying to find that balance between my weight, RA, and College.0
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Hi my name is Cherry and I have RA. I have been showing symptoms since I was 23, but was not diagnosed until I was 27. I am now 33.
I've tried a few meds from plaquinel to Methotrexate (which at both the 10mg and 20mg dose made me sick). I'm currently on Arava 20mg and I've been taking mobic since diagnosis. The Arava isn't working and in Jan I will switch to an injection (which scares the bajeeberz out of me).
I've got roughly 30kgs I want to lose.0 -
Hello everyone!
My name is Katie and I'm 25 years old. I was diagnosed with JRA when I was about a year and a half old. I've definitely been lucky compared to some kids that have JRA and never had to go on any very strong medications. The only meds I remember taking when I was little are aspirin and sulfasalazine. I went for several years during high school and the beginning of college without any meds, and during my freshman year of college my joints were doing great (I had lost some weight and was exercising fairly regularly). Currently I take Aleve (twice a day). I'm trying to lose some weight hoping that in doing so I won't need to take any meds for my JRA. My husband and I have been talking about starting a family in the next year or two, and while I'm very excited about the possibility, I'm also worried that being off meds plus the extra weight of pregnancy will wreak havoc on my joints. Are there any of you that have had to deal with arthritis while pregnant? Any suggestions?0 -
I'm new at this. I am 50 and I have rheumatoid arthritis and osteoarthritis and I need to loose a lot of weight. I would like to have friends to help me with my weight loss journey.0
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Hi there, my name is Dani and i'm 24. I was diagnosed with Mixed Connective Tissue Disease (MCTD) when I was 19. It took nearly 12 months for a dianosis from when I started experiencing pain. No one would diagnose because I am too young to have arthritis. Turns out i'm not, I have rheumatoid arthritis, raynaud's phenomenon and a B12 deficiency. Apparently MCTD is quite rare and no one person is affected my it the same. I take Prednisolone and methotrexate for arthritis and adalat for raynaud's. I have B12 injections every 3 months. I have been lucky since my diagnosis and starting meds to not have suffered too much, I get the occasional flare but know i'm lucky compared to some. Last March I had my first experience with severe pain. I played tennis, so yes this is self inflicted pain. I thought it may hurt my knees or ankles. I never could have imagined the pain in my chest and abdomen. I never knew how many joints there was in that area! I was in the middle east, away from my rheumy so I suffered through with my 1mg prednisolone tablets for 12 excrutiating weeks of not being able to do anything or even lie down. I finally flew home and started on a strong dose of steroids and after another 16 weeks was almost back to normal. From the flare and finding it had to breathe my right lung collapsed. I knew from this experience I do not want to go through this again, so I decided to start taking my illness seriously, which I hadn't before. I joined a gym and worked through the pain to reinflate my lung after months of breathlessness it was finally becoming easier. I continued to attend the gym until a month ago because I am now back in the middle east. I am trying to teach myself to love clean, whole foods and exercise. I know that I need to change my lifestyle to improve my life. I am now dedicated to using MFP everyday to keep myself accountable. I want to love the life I live
I would love to chat to anyone that is on the journey to health and happiness. Feel free to add me Xx 0 -
Hi My name is Deb Martin,
I have had RA for 7 years. I also have Shogrens and Schleroderma CREST Syndrome.
My only child Andrew is 29 and has been stricken with MS and currently is in a wheelchair with a right hand tremor that makes using his right arm impossible to use. I am his primary care giver. I have always been relatively thin. I was the type that always just wanted to lose ton lbs but it never seemed to come off. The past two years with having to care for Andrew I have eaten my stress. I prefer chocolate and have gone through butterfingers benders. I am a true chocoholic. I started with my fitness pal about 5 days ago and keeping track of my food has held me accountable to keep the sweets in check. If I have to log it am much less like to eat it. I have also started exercising for 30 minutes a day on a healthryder and taking my son to the gym 3 times a week to do the weight machines. I know I have to start taking care of myself. I have found myself sinking into what I believe is depression with no ability to focus and little or no motivation. This needs to change. My husband is an angel but he baby's me he never pushes me and sometimes I need a push in the right direction. The exercise alone has really made a good difference in my mood in the past few weeks. I have also been trying to eat a healthy diet with a bit of chocolate thrown in. Each morning I have a 150 calorie fruit and vegetable smoothie and a piece of Ezekiel Bread with a dab of peanut butter. For dinner we have been eating lean protein and lots of veggies. I hope to be in great condition by august as we are taking a trip to Hawaii for a church reunion and I want to be comfortable in swimwear!0
