My worst enemy

By becimacc

2 min read

I have only recently been diagnosed with RA officially. I have been 'suffering' with it for over a year now. I'm a newbie to the RA world, I'm struggling & I'm scared.
It started suddenly with both my shoulders, I couldn't lift my arms, I was told it was a trapped nerve. I found walking uncomfortable because I had what I can only describe as a giant water blister inside the ball of my foot. I was wrong, it's bursae & I can't walk properly, I haven't been able to for 8 months. Friday's a massive day for me I'm getting ultrasound guided steroid injections directly into the joints on my feet/toes- I'm terrified.
I have flare ups all the time, I was told my Dr it was trapped nerves & common for people to have clicky grinding knee joints.
Eventually I was referred to a rheumatologist, I have RA, I was told after numerous blood tests, xrays, ultrasounds & physical examinations. I was shocked, angry, confused, scared & terrified....aren't I too young?? I'm 31! No I'm not too young, its hereditary I'm just unlucky.
I'm currently 'suffering' with a flare up in my right hand & my right hip - its agony, I've sobbed my heart out tonight to my mum & boyfriend. They're frustrated, why can't the Dr's fix me?
I started on naproxen - I'm allergic, I started on sulphasalazine - I'm allergic, I started on dicloflenac - I had chronic nausea, I took extra strong strength ibuprofen - I'm allergic. I took cocodamol - it doesn't touch the pain! I'm starting on hydrocloxoquoliquine - fingers crossed it works.
At work people ask if I'm ok, I say yes, but I'm not.
I work at a college, the students ask if I'm ok as I limp around (on a good day) I say yes, but I'm not.
I get flare ups regularly, I try to cope, I try to deny the agony I'm in, I say its ok its just an RA flare up I'll be ok in a couple of days, I'm not ok. I cry, I ache, I'm tired, I'm in agony, I'm afraid, I'm embarrassed, I'm exhausted - I wouldn't wish this on my worst enemy.
I've got Rheumatoid Arthritis, I'm 31! Luckily I have a truly amazing family, I have the most amazing boyfriend that I love more than words, I have a few close supportive friends, without this support system RA would beat me, but I'm going to beat it into submission. RA will not rule me, I'm going to rule it.....well that's the plan.

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jennl Member
Hi Beci, So sorry about your recent diagnosis. Thank you so much for sharing your experiences with us. We commend you on your strength and bravery. Your family and friends are as lucky to have you as you are to have them! We thank you for being part of this community. Please feel free to post here any time. Warmly, Jenn (Community Manager, <a href='https://rheumatoidarthritis.net' target='_blank'>RheumatoidArthritis.net</a>)
1. becimacc Member
 Thank you, its taken a lot to write it, but, I can see that I'm not alone & that a lot of people have found ways to cope with living it day in & day out. I'm so pleased I've found this group, I've learnt a lot already from the articles posted. Thank you for welcoming me x
Member
Sometimes I dont think Drs fully know unless they have RA why its called practicing medicine. I have been on plaquenil(made me bleed vaginally for a month heavy) so switched to Methatrexate which causes weight loss and GI issues...my liver count was elevated due to methatrexate so they decreased it 7 pills axweek to 4...bad idea. I started having flare ups bad...my hands..shoulders...arms...feet..ribs...jaw...and i could barely eat or get dressed...type at work...open doors..so they upped me to 6 methatrexate 3 mg folic acid..3 1000 mcg of vitamin d..and so far flares up still crazy. I have a,rare form of RA called palindromic rheumatism. Ive had random flares..my wrist for cpl days..then moves to ring finger...then shoulder...im more scared of it attacking organs. I have had to change way of thinking and handling stress. Dr says no stressing and no alcohol. Why marijuana should be legal..i know people whom it helps. I cant..i get randoms at work so just pain meds and naproxen
9411p Member
Hi Beci, I think we all go through periods like you are. I was 13 when diagnosed w/RA. I'm currently 45. Coping and being frustrated are the tough ones. Trying to explain what you are going through when there are no words. Hang in there. I'm currently on prednisone, celebrex, fentenyl pain patch, Rituxan infusions, weekly methotrexate shots, etc. I'm soooo glad you have a great support system in your family. I've been on so many therapies. It's tough to be patient for the "fix" but everyone needs to be patient for what your body is going through...what you will respond to and what you won't. Reach out at any time.... Most of us are here to share! Everyday is a choice....choose to be a fighter, don't give up, be your own advocate. You have a story to tell....tell it!! Deb
Member
Hi Beci- As I read your story, I thought to myself, "So, I'm not the only person allergic to all these meds" (I am also allergic Sudafed and Benydrl- the most common drugs used to treat allergic reactions). Enbrel was a life saver for me. Talk to your DR about it. Good luck. I was diagnosed at 32, I'm now 55, it does get better- it's not all gloom and doom going forward- you will prevail!