My story and struggles

By nrodriguez214

2 min read

I was recently diagnosed with RA. (About 6 weeks ago to be exact) At first I was a little shocked, I had always heard about RA but never really knew much about the disease. As most people I just figured it to be like regular arthritis. That was until one day I woke up in so much pain that all I could do was cry. Every joint in my body was in extreme pain and the slightest movement made it worse. This continued for about a week straight until I reached the point I couldn't take it anymore. I went to my regular doctor who did blood work and revealed that I most definitely had RA. I met with a rheumatologist about a week later who did more blood work and tests. When I met with her again she said my blood work showed all my markers were extremely high and I had a pretty severe case of RA.
It's been about 6 weeks since my first meeting with her and it has definitely been a roller coaster of a journey. I am still trying to manage pain and dealing with symptoms that vary from day to day. Every day is a surprise. When I wake up my mind is already thinking and wondering as to what challenges will we face today. My boyfriend and family have tried to be a supportive as they can but sometimes they just don't get it. They don't know what struggles it is for me to get out of the bed and get my body motivated for the day I have ahead. Or how hard it is to do the smallest tasks like brushing my teeth, getting dressed, or trying to put shoes on. And as if that's not bad enough I can barely sleep. It takes me hours to fall asleep and then when I do fall asleep I wake up after a few hours and often find myself staring at the wall at 3 or 4 in the morning.
One of other major things I am still trying to get use to is the loads of medication I am taking every week. It drives me crazy to think about what all these pills can be doing to my body. I know my doctor is just trying to find a regimen that works for me. But I often find myself thinking is this what my life is going to be like from now on? I am consuming about 50 pills a week. (A combination of things that I have to take each day)
As a woman who just turned 32 I often find myself overthinking this disease and what it is doing to my body. I know I must deal with it forever and it drives me crazy. Everyone says better days are yet to come but I find it hard to believe that. Sometimes I feel so alone because no one I know can relate to what I go through and when I try and explain it to them I can see the judgment all over their faces as I know they think I am exaggerating.
I am very appreciative for finding this website and being able to read the stories of others. I apologize if this is so long and I appreciate you taking the time to read my story and any feedback that is given.
Thoughts and prayers,
Natasha

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Carla Kienast Member
Natasha: Thanks so much for sharing your story with us. It's been almost nine years since my diagnosis but I still remember the first few months and what a roller coaster they were. It takes some time for RA treatments to work so, even though I know you're discouraged right now, don't give up hope. As someone who has been through what you're experiencing now, I know how hard it can be. But I also know that it can get better and you can have a full, productive life. And know that you're not alone. I'm glad you've found this site which is filled with great information and wonderful compassion.
1. nrodriguez214 Member
 Thank you so much Carla!
eebtool Member
Natasha: So happy that you found a doctor and are on your way to getting a treatment plan in place. In time your family and friends will come to understand what you are going through. Things will work out. Hang in there, Ed.
kingkatekong Member
Hi Natasha...thank you for sharing. I was recently diagnosed too. I believe it has been 5 weeks. My situation is slightly different in that I am seronegative and all other labs that could help arrive at a definitive diagnosis are normal. I never gave RA any thought prior to diagnosis. I cry often simply because the pain is unrelenting and inescapable. I've been on Enbrel and Celebrex for 5 weeks--prior to the Enbrel I was experiencing such severe fatigue that I now distinguish it from simply being tired (sleep deprivation) by referring to as "RA tired!" My pain is limited to my hands and feet. I wake up every morning in terrible pain and also cannot sleep through the night without waking from pain. The simplest things that I never gave a second thought to, such as squeezing a sponge, lifting a mug, opening a water bottle, pulling the sheet over are, at times, impossible to do. I'm left with so many questions as I am sure you are: Will I ever be without pain? What is a reasonable amount of pain to tolerate? Is the deformity in my fingers permanent? Will this spread to other parts of my body? Am I now at risk for cardiovascular or other diseases? I am a 43-year old former athlete--very active and fit and I can no longer do what I used to. I am discouraged and sad as I am sure you are to. Stay strong. One thing you said that really resonated with me is that most people I have encountered assume RA is osteoarthritis which, in itself, can be extremely painful and debilitating, but this is an entirely different animal. I see my doctor this week. Hopefully, I'll get some answers and I hope you can find the support you need right now. Thanks for sharing. It's so helpful to hear your story and I am sorry you are going through this. Kate
1. tammyrstevens17 Member
 When I was diegnoiced it was my ankles and knees and 25 years later it has spread to other joints. Not to discourage u. I haven't had a day with out pain since I was 2. I get how terrifying that sounds some days are much better than others. I have come to the conclusion that wishing for no pain is unlikely for me because I have so much damage in my joints from years of inflammation. But if you keep the inflammation down and minimize the damage I think that its possible. Good luck to you.
2. nrodriguez214 Member
 Hello Kate. It definitely helps to hear other stories. But as you said its crazy the littlest things we take for granted. I never gave any of those things a second thought until my RA. Everyday is a different struggles some days are better than others. I am on a combination of things. I was on Celebrex but it did not work for me. As of now I am on Methrotexrate and Predisone with a combination of anti inflammatories and sleep medication. I hate having to take so many pills but I guess it is better than being in so much pain. I am going to see my doctor again in a few weeks so hopefully I get some good news as well. I hope it goes well for you too. Best of luck Natasha
tammyrstevens17 Member
Hello my name is Tam and I am 27 and unlike you I was diegnoiced with RA in 1992 when I was 2 25 years ago. I completely understand when you are in so much pain in every joint and it radiates up and down where ever it is. Some days my pain is manageable and other days I want to scream and cry but we just deal with it. I applied all of us who deal with any kind of chronic pain. Hope you feel better soon. I listen to music and play computer games too get my mind off the pain. Good luck with everything.
1. tammyrstevens17 Member
 Research RA as much as you can I still hAve a lot to learn about RA. I am also on some heavy duty meds and I am trying to change my like style and eating habits to help minimize inflammation and with less inflammation less pain and less damage. Don't be afraid to ask your doctor if a different regimen might work better for you. Once again good luck.
2. nrodriguez214 Member
 Thank you. I have been looking for ways to get my mind off of pain as well. I have been reading and that help some. It sucks because sometimes when I just sit and think my mind starts racing in a million directions. Its a battle but I am trying. Well wishes xoxo
farmerbarb Member
Dear N, I am so sorry to know that you have joined our 'çlub'. You will not believe it but, you are fortunate as I was, that the condition hit hard with an acute attack. The reason I say this is because if it comes on slowly so that you are not diagnosed for several years, then by that time quite a lot of damage to your joints, lungs or even heart can have occurred. this is what my RA guy told me when I sat in his office and bawled my eyes out when he gave me the diagnoses. My first acute attack was I believe, triggered by learning that my husband had terminal lung cancer and not just pneumonia while he was in ICU. The pain hit me just as yours did. I went to bed in the evening and woke up next morning hardly able to move for the pain. My joints were swollen from my shoulders to my feet, I was in agony! Convinced that as I live in the sub-tropics it was dengue fever or Ross River fever, I had a friend take me to the doctor as I was incapable of driving, I told the doctor when I saw him, I think I have Ross River or something. He looked at me and said, it's probably not a good idea to self diagnose, we'll check for that and also for RA. I said, Oh no, can't be RA, I'm too young. He replied, no one is ever too young even babies can get it. This was a surprise to me, as I knew nothing about RA. To cut a long story short, it took about 3 months before my meds started to kick in, so hang in there, and about 6 months to get it under control. From time to time I have a flare, where several joints will swell and become very inflamed and painful, but my Rheumatologist has given me a routine treatment to deal with these and I rest up for a few days also and then it settles down. I thank the Lord that my first attack was so acute, because it lead to less joint and other tissue damage because of my early diagnoses. Good luck, with modern meds we can live a normal life and not end up being crippled as folk did in earlier generations from this auto-immune disease.
1. Richard Faust Community Admin
 Thanks for writing Barbara and for pointing out that it may take time, but that quick treatment can make a big difference in gaining control and preventing damage. My wife, Kelly Mack (a contributor here) was diagnosed at two years old (as you said, it can strike at any age). The treatments have changed dramatically in the time since. This article by Kelly looks at the evolution of treatments she has seen in her life and the difference the advancements can make: <a href='https://rheumatoidarthritis.net/living/the-evolution-of-ra-treatments' target='_blank'>https://rheumatoidarthritis.net/living/the-evolution-of-ra-treatments/</a>. Wishing you the best, Richard (RheumatoidArthritis.net Team)
farmerbarb Member
Hi again N, I have just reread your post and would like to add, that in Australia where I live, the pharmacies stock items to help with such things as putting on shoes and stockings, opening jars and bottles. Also for those who have really badly effected hands and fingers, you can get specially shaped cutlery and things to help with turning taps on and off. You can also change door handles from round knobs to lever type locks, which help a lot when you cant turn door knobs due to swelling and stiffness. I consulted an occupational therapist who gave me hints about how to do things that I found difficult. You can also have splints made for you hands to use for sleeping, which help a lot when your hands are very swollen and painful. Regarding meds for the pain, personally I have found that when an attack is really acute, in my case they don't seem to help the pain. However, first thing in the morning, when my hands are really stiff and sore, I find filling the basin with hot, not scalding water, and immersing my hands in it for a few minutes helps.
1. Richard Faust Community Admin
 Hi again Barbara. Thanks for posting tips for assistive devices. We do have specialty pharmacies here in the States that offer devices. Thought you might like this video from Kelly Mack on her "favorite gadgets" <a href='https://rheumatoidarthritis.net/video/my-favorite-gadgets' target='_blank'>https://rheumatoidarthritis.net/video/my-favorite-gadgets/</a>. Best, Richard (RheumatoidArthritis.net Team)