10 Things About My RA Experience

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I saw this on another blog and stole it because I thought it was interesting to mention the things I probably don’t think are bloggable on their own but are still kinda interesting.

Ten Things You May Not Know About My Experience With RA

1. When I was newly diagnosed, I ‘quit’ my first rheumy in a blaze of glory. He made me cry and his admin was giving me a hard time about releasing my records. I had a moment and called her a name I’m too ashamed to type here.

2. I have permanent erosions on the ball of my left foot. It only bothers me when I stand for a long time in bad shoes.

3. Before I was officially diagnosed, my feet hurt so bad that I really did wear tennis shoes with a business suit. More than once.

4. I have tried every detox diet for arthritis out there including the one where it has you chug saltwater to make you…um…use the bathroom. Which, FYI, doesn’t work. Chugging that saltwater and having NOTHING happen sucks. Waking up the next day 7 lbs heavier due to water retention…also sucks.

5. I can give myself shots, get regular bloodwork, and have had infusions and aspirations. They don’t bother me. But I’m terrified of tetanus shots, TB tests, and the dentist.

6. I didn’t really tell anyone I had RA for the first two years I had it. I’m still very protective over who gets to know the details.

7. The majority of my friends have no idea that this blog exists. Even still, I make a point not to mention specific or identifiable stories.

8. I’ve only ever let one person see me give myself a shot. It just feels too personal for some reason. I’d actually be more comfortable walking around naked.

9. I had weird hormonal things happen in the months before I started having symptoms. Pre menstrual depression so severe that if I thought you had looked at me wrong, I’d burst into tears. Even today, if I start or switch birth control pills, I have strange aches and pains for the first month or two.

10. The first two places I experienced inflammation were the arch of my left foot and my left pointer finger. In both cases, I literally woke up one morning and it felt like I’d been stung by a bee.

And there you go! Do we share any of these? I’d love to hear.

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19 responses »

  1. My RA started in my feet also along with my fingers. Even though I don’t experience a lot of symptoms these days, my feet still can’t handle long days in shoes as I have nodules and hammertoes on both feet.

  2. Over 2 decades ago it began with my left index finger. Pain, didn’t know what it was. An idiot sub reired doctor put a splint on it! Come to find out blood work dictated I had RA. Did not know about it. Wrist pain became so bad I wanted to cut it off. That was 20 years ago. I have had bottoms of feet sore, neck could not move, you name it and 2 joint replacements. Have had every RA drug out there including clinical trial for B cell depletion which helped. Humira was a miracle for a year only! Now take Xeljanz to curb il6 – all is normal again except for the joint damage. Get on the Right BIOLOGICAL BEFORE ITS TOO LATE. Get the right doctor to do the right blood tests for cytokines

  3. Number 6, 8, and 9 ring a bell. I didn’t tell anyone about my RA for years. I was 27 and worried that it would mess with my employment. I think I was also a little embarrassed to have such a weird illness. Strange way to feel I know.
    Never let anyone see the shot process. I don’t really know why. It’s not a big deal but, as you say, it does seem personal.
    Hormones always throw me into a flare. I was diagnosed at 27 and every month I would flare the week before my period. When I started to head towards menopause it was a yearlong flare. It was really like nothing I had ever experienced before.
    My RA presented in a full blown flare. No one finger than other finger then foot for me. No, I just woke up one morning and whammo…could barely get up. Went from being a rock climbing, hiking, biking and running fool to a lump in one fell swoop. Thank God for medication.

  4. 6 & 7 definitely sound familiar. Not to mention, I also have permanent erosions, was in severe pain for way too long before visiting the doctor to get a diagnosis, and have tried a million dietary changes (though not detox, I was advised that my liver/kidneys may not be able to handle the strain of detox while on methotrexate). I’ve definitely noticed a relation to my hormones. Oh, and I’ve also only let two people see me do my shots…it is awkward. Thanks for sharing your list!

  5. My RA symptoms started in my right shoulder, something I have seen in common in many of the onset stories posted on the RA Warrior blog. I also have been very private about who knows, and my hubby watches me inject Humira every other week (it is working for now)

    But what I really want to say here is that Number 9 (number 9 … number 9) is huge … it’s so clear that hormones have a big impact in a majority of cases. OK not all, but so many … and so many more women have this than men. My RA onset coincided with the onset of menopause. A coincidence? NO WAY! Hormones have to have something to do with this!

  6. Ahhh, hormones. My PMS was steadily getting worse for the years just prior to my first symptoms. Also, I have had the bee-sting feeling, but only in my ankles. Other joints have other feelings.

    I just found your blog recently and love it. :-)

  7. Ah yes, #10. Mine also started in the arch of the left foot, but in the left middle finger instead of index. Two years after that I had my first flare and was introduced to the joys of prednisone.And the PMS mood thing is spot on. I never had the pain that many get, but was always super-moody. I found that St. John’s Wort helps that immensely. It’s not an issue now due to early menopause from 25 years of methotrexate, which can apparently wreak havoc on the ovaries.

    I never quit a rheumy, but did with the first surgeon I consulted about joint replacements in my hands. The guy was impatient and answered some of my questions with “you don’t need to know that.” But it was when he said “go talk to your husband” that I gave up on him. It’s my body and no one but me makes decisions about it. Dude was a sexist with a god complex and put me off of surgeons for about 7 years.

  8. I was diagnosed with RA in both hands and right knee in 2011. Fibromyalgia was also added. This is new to me. I had to retire from state employment and put on disability. These were my third and fourth autoimmune disorder since 2010. I also have poly-saccharide autoimmune disorder that the doctors stated I have 10-15 years left to live which really unsettled me. As for RA, I only take two anti-inflammatory medicines and looking towards shots. Pain is hard to handle at times. I hate shots. I rather go to the dentist. I suffer swollen hands, ankles and feet and most of the time walking is challenging. Any suggestions on how to stay active so there’s less pain?

  9. Thanks for sharing everyone. I’m new to all this and am still protective of who knows. Someone commented on my wobbly walk as I exited a bar ( not drinking of course…ah methotrexate) and I wanted to respond that I wasn’t drunk my knees and ankles are killing me and I just want to go home but had to come out for a work event but why bother. Maybe one day I’ll turn into a ranting women in the street but for now I’m keeping it to myself and my partner.
    Mine started in my left knee, had surgery which I wasn’t recovering from, finally the other joints ‘showed themselves’ and I got diagnosed.

  10. I have RA and AS (Ankylosing Spondylitis) and I am starting to have issues.
    I am seeing an excellent acupuncturist in NY which also prescribed me a No raw/cold/grain diet. I started three weeks ago.
    Although my AS symptoms still come and go, my RA nodule which I had on my index for awhile dissapered in two days. I just wanted to share that with whoever is desperate (like me) to get healthy again.
    I am a dancer and moving means a lot to me!
    Love to everyone who is suffering!!

  11. Hello, this is the first time I have ever visited your blog, so I wanted to leave a comment for you. First off, I wanted to say congrats on creating such a great blog, my girlfriend is starting her own and it certainly takes some time and effort! However, I will admit that I had another purpose for leaving this comment today. Last month was Arthritis Awareness Month, and I helped to put together an infographic in honor of this widespread event. While I tried to share it with as many people as possible over the course of May, there were of inevitably many that I was just not able to reach during the month. So, I figured that it wouldn’t hurt to reach out to some more people this month, because spreading awareness for the many forms of arthritis is a crucial undertaking that requires a little more time. If you are interested then I invite you to check out my arthritis awareness infographic and share it with others! The infographic is visible at: http://www.availclinical.com/news/raising-awareness-for-arthritis/

  12. I was 24 when diagnosed with RA and mine started with a swollen ankle and within a month I could barely walk, couldn’t sleep and thought I was going mad. I am now 57 and several joint replacements later and a history of lots of different treatments really recommend that anyone newly diagnosed gets on a biologic or disease modifying treatment as early as possible. It really does make a difference

  13. Hello.. This is the first time I have read a blog about RA. I find it very interesting to see how others deal with it… I was diagnosed when I was 13 and now I’m 27. I have have extremely hard times with it and I flare up all the time… Right now I’m laying backwards on the bed with my foot propped up on the wall because my ankle is so swollen… (I went to a mall and walked around for hours with a friend today) But I reckon it could be worse…. I give myself a shot of enbrel once a week and this is the only medicine that works for me, other than prednisone, of course…. I just moved to a new state and do not have insurance, and only 2 months of meds left… O_o hopefully something falls into place soon… It’s so hard being so young and having to deal with something like this… I just want to wake up and feel “normal” for one day with out some sort of pain some where… I work in retail, my first retail job (the only job I can find that works around a school schedule) and it kills my body to be on my feet and constantly moving…. I don’t like telling people what’s wrong with me, because I don’t want them feeling bad or seeing me differently… Im really good at hiding the pain, but I’m not sure how to go about telling them nothing’s wrong when it clearly is, with out them thinking something strange… Lol maybe after more reading of your blog and seeing other people’s comments on how they cope with RA I can learn to deal with it even better than I do now… Good luck to all of y’all!

  14. I am so tired of this thing they call RA. It torments and haunts me every single day.
    I dream of a day when I can be free of this thing they call RA that just won’t let me be.
    Tired and Weary

  15. I agree so much with everything and especially #9 recently. Have had RA for 28 years. Started with a sore rt wrist, then stiff neck a couple months later, then whole body one morning when i woke up – just couldn’t move. Last twenty something years pain and inflammation controlled with first gols injections and then switched to methotrexate. This last year has been like experiencing a whole new disease though. Lots of inflammation, fatigue, weight loss and depression, and very irregular periods and moods. I truely believe perimenopause has wreaked havoc on my RA. Just started a biologic and have found relief but the last year has been the most difficult by far. I just found this blog and think it’s wonderful! Wishing everyone wellness.

  16. Hi, as I write this, my neck is making that awful crunching noise! My daughter, now 14, types 90 wpm while I can just about type 20! I’m now on Rtituxan and MTX, but still require 2-3 hours getting ready for work. I’m only working part time these days, it’s all I can handle. I miss being able to work 50 hours weekly.

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