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Sleep Problems? What is Happening? How do I make my spouse understand?

  • By ambertwogood

    ***(Warning)**** I know this is long, but I would truly appreciate anyone who can take the time to read it all and help me to help myself. I’m losing my hope and truly would be grateful for any and all advice, experiences, support, and encouragement. Thank you.

    I just had a baby last February. For years I thought my symptoms were from carpel tunnel. I remember thinking at 19 yrs old, “wow, carpel tunnel already?, That seems like it happened really quick?”. I would have periods were my hands would swell so badly that I couldn’t even get myself out of my room in the mornings because I couldn’t grasp the handle due to the intense swelling. I remember waking up in pain all night and having to sleep with my arms hanging off the bed or in a crisscross position over my chest just to get enough relief to go back to sleep. Then all the sudden the symptoms would stop, and everything would go back to normal. I went through years of this. Sometimes the pain was my fingers, hands, and wrist, sometimes it was knee’s and ankles. Sometimes it was my neck and shoulders. But it always subsided and then mysteriously would come back. I always told myself I must of done something to injure myself and that I just had really bad carpel tunnel.
    I’m 29 now, and after having my LO things ramped up intensely. Now, my whole body is stiff in the mornings, it take hours to get to feeling “normal”. My morning starts with creeping to the kitchen to make coffee if it isn’t already in the pot, which is a chore in itself. Then turning on the heat to make the house as hot as possible, bc for some reason it gives me relief. My knee’s, elbows, wrist, all four fingers, my neck, my muscles, my hips, ect. I get what I can only equate to charlie horse like cramp/spasms in my back if I stand washing dishes or any other chore for that matter too long (which too long is relative bc it can happen within minutes to just mere seconds. I had never even thought about RA until when I asked my doctor about my hands and when she saw the visible swelling and redness in BOTH had suggested she run a RA panel. All but the inflammation one came back within normal (higher end) ranges. I’m in the process of being diagnosed. I feel like my body is failing me. I feel like a 29 yr women trapped in a 90 yr old’s body. My SO and I argue over the results of my symptoms ALL THE TIME. One of the new things that is happening, that is probably my fault due to trying to accommodate his requests for help, is that I now only sleep every other day, so that I can help with our one year old in the mornings. So, insomnia has been added to my list of “symptoms”. The reason, I decided to just stay up one night was because most of my nights I already have trouble sleeping, so I stay up and clean my house (while the baby is sleeping, because I also feel like a failure of a mother because it’s so hard to just do normal everyday up keep and keep up with my growing infant). I was already having MAJOR problems waking in the mornings. I don’t hear my alarms, so I buy different clocks. My SO comes in to wake me and no matter how long I’ve been sleeping (8-16hrs) I still feel as though I’ve been drugged and am waking up from surgery, almost in a paralyzed like state. The not waking in the mornings is what causes and did begin majority of our argument and problems in the beginning. Now, it’s everyday that I hear about his strife to wake me. I mean, does he honestly think that I feel good about not being able to wake on my own with my daughter in the mornings, and be the “magazine like” stay at home mom, that most moms strive to be. I can’t even wake up with her in the mornings to let my spouse sleep in sometimes, unless I just stay up all night. Which is now causing more problems then it’s solving. I don’t know what to do. I just wish I could help my spouse understand what is happening to me and that this is not a conscious decision to just be lazy and not help out. I hear all the “JUST GET UP!!!” or “Go to bed earlier” or “I guess we just aren’t that important to you” . Does anyone else have these symptoms of not being able to wake in the mornings? What have you learned to do to cope with it and help to ease it so that you are able to get up? What is every doing to help to get their spouse to understand what is happening to your body and try to get them to help you to help yourself? Please, all experience, stories, and advice is much appreciated. Thank you for all your understanding and support. Because, Lord knows, I’m not getting it at home 🙁 I just want to cry sometimes over all this. I wish I could will my body to do what I need it do. I can’t even change my daughters diapers in the mornings sometimes because my hands are so swollen and painful. It’s difficult to pick her up because of the pain in my hips, knee’s, neck and back, and elbows, etc. Do you know what it is like to listen to your baby cry because they want you to pick them up and you just can’t because your body is failing you. I feel like a failure of a mother. I feel like I’m failing my spouse. I feel like I’m failing myself.

    P.s. If you’re wondering how on earth I managed to type all this, it wasn’t easy, and it was full of stops, readjustments, repositioning’s, etc. The tingling, burning, and pain were worth it if I can actually get some advice and support, though.

    With Sincere Blessings and Support to Anyone Going Through What I Am,
    Amberlynn

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  • By Lauren Tucker Keymaster

    HI Amberlynn,

    Thank you so much for sharing your story with us. We hear you on typing and we commend you on doing such a great job at it. We are glad you are here and you certainly are not alone with the symptoms you mention. We hope you get a diagnosis so you can get the support and help you deserve.

    Our community is filled with people of all ages and different symptoms. While our community may be able to provide you with support and feedback I have some articles to share with you.

    Since you mentioned you have Morning Stiffness and pain I thought these articles would be helpful.
    “Managing RA Pain” https://rheumatoidarthritis.net/living/community-ideas-managing-pain/ as well as “Handling RA Stiffness in the Mornings” https://rheumatoidarthritis.net/living/stiffness-in-the-mornings/

    Additionally I thought these articles on Sleep would be beneficial as well. “How to get a good nights rest” https://rheumatoidarthritis.net/living/sleep-ra-get-good-nights-rest/ and “6 tips for better sleep” https://rheumatoidarthritis.net/living/6-tips-managing-sleep/

    We also know how frustrating it is when it feels like no one understands you. We encourage you to reach out to a counselor for additional support as well as sharing any of these articles or articles you find on http://www.RheumatoidArthritis.net with your spouse.
    Here is an article one more article on “When people just don’t get it” https://rheumatoidarthritis.net/living/people-just-dont-get/.

    We wish you all the best, please come back anytime for support or questions. Thanks for being part of our community.

    Best Wishes,
    Lauren (Community Manager RheumatoidArthritis.net)

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  • By Tamara Haag Moderator

    Hi Amberlynn,

    I’m so sorry you’re having such a difficult time! Caring for a baby is difficult for everyone, but doing so in the midst of severe symptoms and not yet being diagnosed/treated makes that so much harder!

    In addition to the articles that Lauren suggested reading, here are a few you may want to ask your husband to read, as it may help him understand what it is like to live with RA:
    – fatigue: https://rheumatoidarthritis.net/living/tired-of-tired/
    – this tries to put reader in RA patient’s shoes: https://rheumatoidarthritis.net/living/have/
    – impact on relationship: https://rheumatoidarthritis.net/living/its-not-its/

    I, too, feel the impact of RA on my ability to parent. Here’s an article I wrote about having a baby while having RA: https://rheumatoidarthritis.net/living/being-a-new-mom/. Know that while you may sometimes be limited in the ways you care for your baby, the most important care comes from your heart. If you can’t hold your baby, lie in bed with her cuddled next to you or on your chest. Get a comfortable baby carrier and keep her close to you with that, so that you don’t have to use your hands to hold her. It is frustrating, but with some creativity you can still meet her needs.

    Please know that you are no alone, and that you can reach out to us any time you have a question or concern you want to share.

    Wishing you all the best,
    Tamara (Site Moderator)

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  • By Anonymous

    Hello Amber,

    First, I’m sorry to hear about your issues with sleep and waking. Sleep, when your RA is raging, can be difficult. I’m also sorry to hear that your husband, at least at the time of this post, did not understand what you were going through. It is really important to have someone by your side that understands and empathizes with what you are going through. I remember when I had to literally write a letter to my wife and really spell everything out to her about how I was feeling more and more desperate due to my increasing symptoms at the time. RA can be really obvious or it can be something that people simply can’t see, much less understand.

    I really hope that you have found a little peace with your situation, and that your husband has found some understanding. This disease can be devastating, especially if you have not found a treatment plan that works for you. Rest assured though, there are treatments that are effective and you can experience, at least, a significant reduction in your symptoms.

    I found that a hot bath before bed, when I was really sick, calmed everything enough for me to get to sleep. Hang in there. You are not alone.

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