RA Journey With Passengers

I’m an RN who at age 59 was diagnosed RA and FIBROMYALGIA. My previous medical picture included OA, Spinal stenosis with severe foraminal stenosis in my cervical spine. I also had both knees replaced at ages 53 & 54 due to OA. Three Drs advised no more nursing due to risk of paralysis. So I quit and went on disability. After trying many medications I have yet to find one that is effective for my RA. Been on my current meds for 1 month but no improvement is noted. I do take nsaids and narcotics for pain that help which I would like to stop if I could find an autologic product that works. I am hopeful but it’s difficult. I busy myself with sketching, making greeting cards,hemp bracelets and various painting projects. I have worked all my life and loved nursing…it was my passion. So my new role was quite devastating emotionally and financially. Thank you for this opportunity to tell my story and read about others. It is therapeutic to know you are not alone with these issues. My husband provides as much support as he can and I am blessed in that but communication with those in our shoes is priceless. Thank you and that’s my story.

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Comments

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  • sc
    4 years ago

    Hello, I am new to this site, so I apologize for the long comment. I’m a 57 y.o. web designer at a major medical center in Chicago. I became ill 12 years ago when I was 45 y. o. with what I thought was the flu. Total body aches. This morphed into cervical and lumbar spine pain, bilateral joint pain in hands, wrists, elbows etc.

    My current diagnoses are: I am seronegative so my RA diagnosis turned into Psoriatic Arthritis, Bilateral carpal and cubital tunnel (told that it is caused by my immune system, so no surgery) Fibromyalgia, Hashimoto’s Thyroid disease (my thyroid is mostly scar tissue) Eosinophilic Esophagitis ( I have had 4 esophageal dilations due to strictures) Raynaud’s disease (hard to control) DD cervical and DD lumbar spine disease and Osteopenia.

    I have tried an exhausting list of alternative and conventional medications and types of physical therapy over the last 12 years. I was on Enbrel for 6 weeks, and had to stop due to the horrible neurological side effects and a severe upper respitory infection. I will start Humira next week.I

    My job requires long hours of keyboarding and mousing, which aggravates the inflammation in my hands, wrists and elbows and spine. I am in constant pain.

    I am to the point of applying for disability. My job provides me with health insurance (husband is on my policy as he is self employed), short term disability, and long term disability.

    I am terrified of this process and want to go about this with armed with as much knowledge as possible. Since a few of you seem to have experience with this I was hoping to get some input. Any advice is appreciated. Thanks for reading this.

  • sc
    4 years ago

    Hello, I am new to this site, so I apologize for the long comment. I’m a 57 y.o. web designer at a major medical center in Chicago. I became ill 12 years ago when I was 45 y. o. with what I thought was the flu. Total body aches. This morphed into cervical and lumbar spine pain, bilateral joint pain in hands, wrists, elbows etc.

    My current diagnoses are: Psoriatic Arthritis, Bilateral carpal and cubital tunnel (told that it is caused by my immune system, so no surgery) Fibromyalgia, Hashimoto’s Thyroid disease (my thyroid is mostly scar tissue) Eosinophilic Esophagitis ( I have had 4 esophageal dilations due to strictures) Raynaud’s disease (hard to control) DD cervical and DD lumbar spine disease and Osteopenia.

    I have tried an exhausting list of alternative and conventional medications and types of physical therapy over the last 12 years. I was on Enbrel for 6 weeks, and had to stop due to the horrible neurological side effects and a severe upper respitory infection. I will start Humira next week.I

    My job requires long hours of keyboarding and mousing, which aggravates the inflammation in my hands, wrists and elbows and spine. I am in constant pain.

    I am to the point of applying for disability. My job provides me with health insurance (husband is on my policy as he is self employed), short term disability, and long term disability.

    I am terrified of this process and want to go about this with armed with as much knowledge as possible. Since a few of you seem to have experience with this I was hoping to get some input. Any advice is appreciated. Thanks for reading this.

  • elisee55
    4 years ago

    Ladychef, I also have not renewed my license. I am so foggy and in so much pain I have trouble organizing my thoughts. I had some liver issues just wt the time I was diagnosed, and that limited the drugs I could be on for the RA. So my liver finally settled down and I am trying methotrexate. But nothing is really working very well so far. I can’t take steroids while trying to get stuff settled down as my bone density is too low. We all have to fo the best we can do.

  • Cassandra Bird
    4 years ago

    Thanks lady chef hope you are as well as can be. Good luck with meds. I have and fibro amongst other issues. Nothings worked yet, start enbrel this week! Fingers crossed haha if only?!? Kind regards x

  • Ladychef author
    4 years ago

    Goood luck with Enbrel. Hang in there and let me know how you are doing.

  • Ladychef author
    4 years ago

    Thank you. Now on steroids till Xelganz kicks in…about 3 months so my Dr says. Take care.

  • Joni Lyver
    4 years ago

    Thanks to this article I now know two people with the same conditions as me! How lucky is that? I’m on my 5th RA medication and haven’t found yOne that will last a year, I get so frustrated with this! Waiting till the last one is out of my system. Taking it got at least 4 months to see if it will be effective. Then starting all over again! Man! It wears you out! Xeljanz was the last one and I got the most relief from it! It just doesn’t continue to help. After a while my body becomes immune to it? I’m not sure, but, I know it quits working! Do you ladies share in this frustration?

  • GingerS
    4 years ago

    Elise, I have been an LPN for 41 years. It is killing me to have to quit working. I am on disability now also. Main diagnosis is RA, osteoporosis and osteoarthritis. It has hit my right hand the hardest and both my knees. I basically have it from head to toes. A couple of weeks ago I went through some major depression. But have pulled out of that for now. Thank God. I blamed it on my medications. ( heh) Whatever the reason or reasons I am ok now. I wish you luck and know you have support and are not alone.

  • Ladychef author
    4 years ago

    I so appreciate your support, I am now on fourth biologic Zelganx, will know if it works in about 3-4 mo.So now on steroids which help tremendously.Good luck to you and you have my support as well!

  • Ladychef author
    4 years ago

    Elise, if you have any disability coverage through your former employer I sugggest you look into that. I was fortunate and had short and long term benefits that carried me through. And, another blessing was I was granted SS disability on the first try. I identify completely with your limitations since I experience the same…lots of down time.Acceptance eas a hurdle but now, 4 yrs later im more at peace with all of it. Wish you the best.

  • elisee55
    4 years ago

    Wow. Someone else with almost the same combination of conditions as I have. It’s hard to cope. I was also diagnosed with osteoporosis, which is a common co-morbidity. (Have you had your bone density checked yet?) I wish you all the best. It’s a tough row to hoe….

  • elisee55
    4 years ago

    Good evening. I’m not working and am trying to get disability. I stopped working a month ago. I cannot be up and around for more than a few hours at a time.Your title here is most apropos.

  • Ladychef author
    4 years ago

    Thanks Elise for the well wishes. Yes, I have ha a density done and have osteoporosis lumbar spine.I agree, its tough. Im on disability,are you able to still work? Wish you well.

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