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I will never be me again

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Rheumatoid Arthritis
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Sundance123
New Member
Joined : May 2021
Posts : 1
Posted 5/12/2021 10:07 AM (GMT -6)
I am 59, and for several decades I have been receiving treatment for my Fibromyalgia. Through the years I kept getting worse as far as pain, fatigue, memory issues, weakness and depression. I kept assuming it was just Fibromyalgia. But then I went to a different Rheumatologist, two years ago, who diagnosed me with RA along with Fibromyalgia. I had to quit working in late 2018 and this was hard for me emotionally because I have always been a self-sufficient person working in the human services field helping others with developmental disabilities.
Now my RA doctor has been trying different medications to help me. Currently I am taking Humira injections every two weeks along with the eight other meds I take for Fibromyalgia. I also take an Amovig injection once a month for migraines and Omeprozol for GERD. I just feel so alone. Like no one understands. What issues or body parts the RA doesn't affect, the Fibromyalgia does. Few days are good days anymore, and I just feel so helpless even though my RA doctor tells me we will find the right meds. Maybe I'm just feeling sorry for myself. This is a bad day.
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stella1980
New Member
Joined : May 2021
Posts : 6
Posted 5/12/2021 12:28 PM (GMT -6)
Hi there ❤️
I completely understand.. i ve just veen diagnosed with RA at 38 out of nowhere and I am devastated to say the least but I think its normal in the beginning , its hard to accept it .. ubve been dealing with another ailment for so long and hopefully you ll get used to your new treatment.. you will find the right medication combo ans i d suggest maybe to see a therapist.. i know i will because the first week i kept it to myself i almost went crazy .. now im telling my friends .. explaining is hard they all think its a “tear and wear” disease and not an immune one but they do understand and it feels less alone.. we cant let this end our lives.. ive had depression all my life ans never thought id be afflicted with a “psysical “disease on top of a mental one but here we are.. talk about it .. share it .. and try to see a therapist .. i know i will ❤️
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CaMama
Veteran Member
Joined : Mar 2005
Posts : 1910
Posted 5/29/2021 5:04 PM (GMT -6)
Trust me, you are NOT alone, but it can feel that way if no one around you seems to understand why doing the simplest of chores is like asking you to stand in for Atlas. I hope your doctor can find the right med for you. They've made so many advances with the biologicals and there are so many new options out there now. Good luck!
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Tomnh
New Member
Joined : Aug 2020
Posts : 7
Posted 7/16/2021 10:12 PM (GMT -6)
I signed into this forum for a chance to speak with folks like you.
Have been affected by RA for 20 years and have felt alone.
Things get better as the wave crashes over us and we adapt.
Humira the wonder drug, mtx the workhorse, and prednisone the relief ..
Take what your meds can offer. Enjoy life when you can.
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constantpain
Regular Member
Joined : Mar 2013
Posts : 47
Posted 12/1/2021 12:38 PM (GMT -6)
I feel your pain as I suffer with Fibromyalgia , RA, Sjogrens. If I mention how i feel or what I have everyone comments, I have that too. I give up and suffer in silence, My Fibromyalgia morphed into Rheumatoid Arthritis gradually. I have been on Enbrel thru the Safety Net Foundation for free for the last 5 years. Its getting harder and harder for my Dr to fill out the required forms at the end of every year. This year its been a mess and he hasnt done anything as of yet. I bother him every couple days to no avail. His wife is his Medical assistant and shes mean as a snake. I have to pay her for faxing the forms and an office visit charge. I didnt mean to get carried away but if you dont have good insurance they dont cover biologics at all except MTX, I dont know what to do because Enbrel has me to close normal.
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Ollysmama
New Member
Joined : Dec 2021
Posts : 1
Posted 12/16/2021 8:45 AM (GMT -6)
Hi Sundance 123. I know what you are going through. Similar age - I’m 59. In 2005 - when it hit me, I was was teaching, coaching, and going to the gym 1-2 times a day. My life was full of activity, children, co-workers, goals, progress, movement, and the fullness that all of that involvement brings. In the next several years, without a diagnosis as RA wasn’t showing in my blood work (seronegative RA from what I understand), I ended up with several surgeries. Achilles rupture and repair, shoulder rebuild, several arthroscopic knee surgeries on my knee which led to a partial replacement, and a bunion and bunionette surgery. In addition, my right pinky, left wrist and elbow would scream with pain and swelling. From 2005-2011, nobody understood. I was blamed for being me (too busy, working out too much, letting stress of a divorce and the toll it took on my relationship with my daughters, and expecting too much of myself). I was finally diagnosed in 2011 after 6 years of damage, confusion, and misinformation.

I pushed hard to maintain life as I had been living it, but was finally forced to go on disability mid teaching year in 2015. The fatigue was just too much. I have grieved, and still am grieving over the loss of “who I was”. It hurts. It hurts so badly. It is so confusing and lonely. People don’t ask to do things with me. I can’t do the hikes that I want to go on, I can’t coach the kids on the volleyball court, or hold the babies in the church nursery. I forget and/or cancel plans for dinner with friends because I can’t keep it all straight in my head. I feel like I disappoint my husband on every turn as I can’t keep up. It hurts to go to bed and rest and it hurts to sit in a chair and rest - and yet I can’t move well.

This is enough to take a person down. Down to where we don’t even want to try anymore. I know I have been there and still go there sometimes. AND YET, I have had to look at myself to say….is this where you want to stay or do you want to re-build. Re-build something new from the strengths that have nothing to do with my joints, my physical body’s ability to perform. The thought of rebuilding something new is daunting. Scary as hell. AND YET, I think to myself - I have two options - continue to long for who I was OR to find the internal me that was possibly overshadowed by my “doing” with my physical body. I am BEGINNING to see that the strengths, abilities, and gifts I still have are actually quite amazing. I am BEGINNING to see that my contributions in this life to others and myself don’t have to have anything to do with the “meat bag” portion of who I am. I am BEGINNING to shift my thinking from what I have lost to who I can become and it is helping. Do I have bad days? Yep. In fact, I had neck surgery in March and another knee surgery a week ago. As I write this, I hurt all over. But that’s the “meat bag” part of myself. The part that can’t deteriorate unless I let it, is my mind and my heart. It is an everyday decision, but I am choosing to look past and through the pain and fatigue, rest the “meat bag” and treat it with love while being excited about focusing on my discovery of who I am on the inside. It is really helping my “hope” and “joy” factor.

I pray the best for you in your journey, Sundance, and hope you can find new ways to discover who you are that are a great work around for who you “used to be”.
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KM2018
Regular Member
Joined : Aug 2018
Posts : 68
Posted 6/19/2022 4:56 PM (GMT -6)
Hi. I’m so sorry you’re having a hard time. I agree with the therapist suggestion, they can really help with coping strategies and even just validating how you feel.
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Amita123
New Member
Joined : Jun 2022
Posts : 1
Posted 6/22/2022 8:31 PM (GMT -6)
Hi Sundance, I just wanted to let you know you are not alone. I am new to this community and new to discussing my condition online but like you, I felt like I was reaching my breaking point. In my culture it is not common to speak publicly about your health and things like mental health are taboo. We all know how important it is to manage stress as it can trigger something that ruins your day and causes your pain to flare. I realized that I need more support and need an outlet to talk about my condition and some of these communities have been very helpful. Don't stop speaking up and asking for support.
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