Anyone with Rheumatoid Arthritis?

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Hey everyone! I'm Amanda, 32 years old. I have moderate to severe rheumatoid arthritis. Because of this, I find it very hard to exercise. My knees are in pain all the time (I'm mobile, I generally just deal with the pain). I do try and do a few small walks a day to get some steps in. But I am focusing very hard on my eating habits as I know losing some weight will relieve some of the knee pain.

Does anyone else experience this? I'm looking for others so we can support each other. 💜

Replies

  • helaurin
    helaurin Posts: 157 Member
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    Hi Amanda, I was "officially" diagnosed with RA about 5 weeks ago, but my primary care doctor suspected it for the past couple of months prior to that. And frankly, it's probably been an issue for a couple of years for me, but my primary care doctor didn't connect all the dots until more recently.

    As for me, I'm 56 years old, working full-time at a very sedentary job, raising a 12-year-old. I often have a hard time finding time to actually exercise in a way that I can do for me (I'm also a Girl Scout leader, and a 4-H assistant leader).

    At my worst weight, I was around 194 lbs with a BMI of 37.9
    I lost some weight back in 2012 and got down to 171 lbs, with a BMI of 33.4

    Over the past few years (2013-2018) - about 5 1/2 years - my weight crept up from 171 to 177.

    For me, the difficulties are mostly focused on my left side - the knee is the worst, as my left knee was initially injured in a gym accident in high school (many years ago...), it took nearly ten years before I could afford surgery to repair some of the damage, and then about ten years ago, that same knee had another accident (it was slammed into by a dog with a head like a huge block, dislocating the kneecap which subsequently fractured when I landed on the same darn knee). That put me into a wheelchair for a while, then crutches, etc.

    One day in May this year, I woke up and couldn't use the left leg at all. Hello, I needed a cane to walk at all.

    That was a rude (but effective) wake-up call that I was going to need to figure out a better way to live.

    On July 17th of this year, I restarted my push to lose weight. So it's been... 30 days, as of today, since I started again.

    In the past 30-days:

    Weight went from 176.6 to 166.4 (weight loss of 10.2 pounds)
    BMI went from 34.5 to 32.6 (almost two points... still obese, but moving in the right direction)

    Walking is getting easier for me as I am working hard to lose weight. Getting into an aqua-therapy class for arthritis has also helped, although I can't make it often because it's only offered near me right in the middle of the work day. Carefully doing some weight exercises is really helpful too, to build muscle, since that needs more calories to maintain than fat cells.

    My go-to tools: a nutritional scale, a fitbit tracker, and a body composition scale.

    I'm not on a keto-diet per se, but I've ramped up my protein intake a bit, but still make sure I get some fat and carbs in my diet. And lots of zero-calorie fluid. Water is best, but... I dislike plain water. So I often do Crystal Light Ice Tea with lots of ice.

    Medication-wise, my doctor had me on meloxicam, sulfsalazine, zolpidem, gabapentin, and wants to add Xeljanz (assuming I can figure out how to afford it... the before-insurance price is $4,900 a month, which I just don't have). We're looking into manufacturer patient programs, etc.

    Feel free to friend me if you like.

  • mustardnchips
    mustardnchips Posts: 22 Member
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    Me, diagnosed on my 28th birthday (yay happy birthday me!) I'm now 2 years on.

    Currently trying not being on methotrexate, as i was just exhausted all the time, and comfort eating because i was so exhausted and feeling sick, unless i was eating, then i didn't feel sick.

    I've joined a gym so i can swim and go to pilates, the instructor is happy for me to sit and watch when my hands say enough, as i reached 11st4lbs and really noticed an increase in pain. Currently at 10st6 and not as sore.

    I am better avoiding sugar (oh how i love chocolate) and not eating lots of red meat. I try to follow the Mediterranean diet as supposedly that helps, but as its me and my husband it does vary.
  • shmkdnls
    shmkdnls Posts: 10 Member
    edited August 2018
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    Hello, I'm 32 years old also, I went to the doctor a couple of weeks ago because for the past couple of months I have been having joint pain. It started out with me not being able to bend my right elbow all the way out without being in lots of pain. A couple days after that It hurt so bad to bend my left knee. Then my right index finger wouldn't bend....and so on and so forth....It all started all of a sudden and would switch to different sides of my body, even my toes are sore when I bend them. My Primary Care Physician did some blood work, and told me that my tests for RA came back positive and referred me to a specialist. I haven't received a call with an appointment from the specialist yet and I'm afraid of what he/she might say, but I have to be prepared. I am already looking for ways to not have to suffer with this. I'm currently on meloxicam 15mg and if I wait until the pain is really bad then the meds take forever to kick in. I have to take 2 instead of 1. I'm also having to take iron supplements. I have been going to the gym at least 5-6 days a week and feel fine for now. I really need to start eating right though. Its just me in my household so I rarely cook, mostly eat out or eat frozen dinners, like zataran bowls, or frozen pot pies or something like that. I really need to find some healthy meal recipes.
  • ruqayyahsmum
    ruqayyahsmum Posts: 1,514 Member
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    Bloods and x-rays came back 2 weeks ago for me, still waiting for appointments to come through

    Been back and forth to doctors for years but just told I was fat (387lb at heaviest) for the last year I've had issues with my knees giving way or locking up resulting in some great falls, twice while holding my son

    I've lost 166lb so far, can now walk without a stick finally at the age of 36 lol

    My doctor showed me some research suggesting a vegetarian diet helps with the inflammation and pain..... Can't say it's helping at the moment as I'm in constant pain, particularly on my right side where the joints are showing more damage
  • Chieflrg
    Chieflrg Posts: 9,097 Member
    edited August 2018
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    49 year old, med free.

    One thing that helps me and those I advise with RA along with other autoimmune diseases is living a life stress free as possible. You are correct losing unwanted weight will help to an extent.

    A good way to help with that is by the exercise you can do without causing non useful stress to your body.

    Running while using a program such as C25K might be useful for those mentally prepared since it strengthens mentally and reduces stress. I ran 5-18 mIles a day eventually for well over a year.

    Another thing I highly recommend is strength training. It helps strengthen the muscles around the joints which will help with pain if done with correct dosage at s useful intensity. Form is very important. This doesn't mean just lifting randomly, but under a structured program appropriate for your level.

    I've returned to strength training a few years ago after unfortunately bring advised by my doctor to quit which had me walking with a cane after a few months. Since restarting training, I've broken several powerlifting records in the USAPL.

    Good luck.
  • cyndit1
    cyndit1 Posts: 170 Member
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    RA and lupus here and I am also a distance runner (3 marathons and over 30 half marathons and countless 5Ks and 10Ks) and I find for me keeping active is as powerful a drug as the MTX, Plaquenil and Cimzia i also take. I used to fight the meds but keeping a balance of medications and activity has kept me moving for the many years since diagnosis. I will say that I had a pretty bad flare this past winter and was on prednisone for 6 months and gained a crap load of weight that has been really hard to get off but I am thankful that it broke the flare and that I am able to keep running and am also working hard now on my nutrition again. I agree that being lower on the scale for me makes a huge difference in how I feel. I also know what i need to do now to keep myself from flaring to that degree again. Rest, eat well, keep active every day and reduce stress.
  • GMB_2013
    GMB_2013 Posts: 2 Member
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    Seronegative arthritis here, four years since diagnosis. The Rheumatoid factor isn’t high enough for RA diagnosis, but I have had joint pain since childhood. I am 43 now. I am losing weight for pain management and to maintain mobility and to increase stability. I am looking for support on my journey, too.
  • joyryun
    joyryun Posts: 1 Member
    edited September 2018
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    I don't have RA, but do have a type of arthritis that started in my mid-30's. Mine is not auto-immune so I'm sure its somewhat different. I wasn't surprised by it since every woman in my family has this. My rhumey says it's just a genetic variant and not from overuse or injury. Mostly in my hands but my knees and feet bother me too. I was on meloxicam for awhile...but now I'm med free. The best thing I have done to be pain free and reduce systemic inflammation is to cut out the sugar and most grains. In addition, I take turmeric daily and CBD oil. I was still feeling some pain....then i started intermittent fasting and my pain as basically disappeared. I fast from 6:30 PM to 2:30 PM. I have a snack at 2:30 of about 500 calories. Then a large dinner at 6:00 of about 700 or 800 calories. No morning stiffness and I'm pain free all day. I don't know if it's just a coincidence or not, but I'm going to keep up with it.

    I'm pretty active as well...I walk a lot, hike and in the winter I ski regularly. So the arthritis hasn't stopped me from doing anything, but I used to hurt so bad after a day of skiing. I'm hopeful this year will be different.