Swelling, Brain Fog, and Pain…Oh My!

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I’m not doing much better today. I finally fell asleep last night around 4AM, and then took the morning off and slept until noon after I got the kids on their buses. My hands are more swollen then they have ever been, and I can’t even tell you what body part hurts the most. I hurt everywhere!

Days like this are so hard, and I know my fellow autoimmune sufferers can understand. I don’t want to sleep all day. I have a lot of things that needed to get done. The people who say “just push through it” don’t have a clue. I am the person that just pushes through. Most moms take care of themselves last. We aren’t allowed to get sick. We hold our little ones as they cough all over us, and when we finally get sick the caring for the children doesn’t stop. We push through.

I guess that “push through it” annoys me because it implies that I’m not trying to push through the day. What many people don’t know is I’m pushing to get through of most days, but they don’t get that. When I have a day like today, there is no pushing through. I can’t move without intense pain.

I’m walking hunched over, and when I get up I feel like my knees are going to give out. I even had trouble holding my cup of tea today…so NO, I’m not pushing through anything. I’m letting my body guide my day and doing what I need to do to get through. I refuse to let anyone tell me that’s some kind of failure…giving in and staying in bed most of the day. As far as I know, I’m the only person in this body and no one else can judge the level of pain I’m in.

After I put the kids to bed, I took some narcotic pain medicine. The thing I hate the most about it is that they all seem to make me itchy. I constantly scratch myself when I take percocet, vicodin, or dilaudid. It’s some weird reaction, but I would rather be itchy than in pain. To be honest, the medicine just took the edge off the pain. It’s not like I’m feeling good at the moment; I’m just in a bit less pain.

Brain Fog

I don’t think I’ve touched on the topic of brain fog much on my blog yet. I think it’s something I don’t like to admit to having. I’m ready to tell you, that today was also hellish in terms of brain fog. I know my routine, yet for the past few days I’m forgetting things. Last Thursday I forgot to bring my daughter to dance simply because I didn’t remember it was Thursday.

That’s just not like me. I know these storms we’ve been having contribute to the amount of pain and other symptoms I’m having, but I’m just not sure what to do about the brain fog. It doesn’t seem to get better with sleep. I’m at a loss for what to do. Any helpful hints are most welcome.

Going Back to the Rheumatologist

I’ve also given myself a deadline of the weekend to start feeling better. I really wanted things to work going off my RA meds, but I’m seriously considering going back on the Plaquenil. I have researched other things I will ask the good doctor about, but I just can’t keep going on in this kind of pain. I want my life back!

Tomorrow is another day, and I’ll work on being less crabby and less of a downer. We all have days like this, I’m sure.

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7 Comments (+add yours?)

  1. Linda Atkins
    Feb 11, 2014 @ 06:26:08

    Well, my dear, where oh where to start? Let’s start with pain. Have you ever tried the Fentanyl Patch? It is hard core, but so are some of the other drugs you have been on. On top of Fibro, I have a Addison’s Disease, Diabetes, A Pacemaker, Arthritis, A herniated disc I get Epidural injections for every 3 months and a Mediport I get IV’s through every other day. I was paralyzed in September when I fell after getting an injection in my back and the disc slid over the nerves making me unable to walk or control my bladder. With great physical therapy, I am on the mend. The point of that tangent was to let you know, it is okay to have outside help when needed, I have 2 wonderful caregivers, and when there is a drug that might help you, try it! I am on Fentanyl 50mg Patches every 72 hrs., along with those I can still take my Hydrocodone. Something good for nerve pain is Gabupentin (that is the generic name). Some options. Next, when you are completely depleted and weary, go back to the basics: medication; food; hydration and rest! Don’t watch the news, don’t answer calls, unless it is someone uplifting and you really want to talk to, you can apologize later, make arrangements for the children, close your door and just rest! Best advice my Doctor ever gave me. Learn to say no! The world will not fall off it’s axis. You are a mama, but YOU come first or they won’t have one. Now how was that for a preaching? I hope some of my advice helps, and I hope you have many better days to come. {{Hugs}} ~ Linda Atkins ~

    Reply

  2. charleen bekker
    Feb 11, 2014 @ 06:41:04

    Good luck! It’s worse Than horrid to be in that Pain – the Pain never stops just the levels change

    Reply

  3. Jill Fontana
    Feb 11, 2014 @ 21:57:26

    I can so identify! Have you tried taking Benedryl or Zyrtec with narcotics for the itching? That is what my Rheumy suggested it and it seems to help!

    Reply

    • autoimmunemamabear
      Feb 11, 2014 @ 22:06:29

      Yes, I ended up taking a Zyrtec last night and it did seem to help. I broke down and made an appointment with my rheumatologist tomorrow. I’m fearing prednisone in my future.

      Reply

      • fefe23
        Feb 11, 2014 @ 22:59:45

        Omg I dislike prednisone too, it’s like being high and having the munchies all the time

      • Jill Fontana
        Feb 13, 2014 @ 20:37:41

        I too hate prednisone! I gained a bunch of weight last yr. because of it and still can’t get it off! Ugh! Glad the Zyrtec helped~ morphine made me itch like that but I am not taking it anymore thank goodness! Speaking of Zyrtec, do you find allergies worse with RA? Mine go crazy sometimes~ Dammit! More issues! 😦

      • autoimmunemamabear
        Feb 14, 2014 @ 05:12:25

        My allergies are always worse during a flare.

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