Tomorrow and energy and stuff #lupus

My rheumatologist told me last week that we are doing everything we can safely do to control inflammation and the pain caused by it. The next step is to try to control the pain not caused by inflammation, and also my brain fog issues. I’m seeing a new specialist for those things tomorrow. I’m not a fan of going to see a new doctor. It always makes me nervous.

I’m still struggling with energy. It doesn’t help that I can’t seem to get a decent night’s sleep. I woke up every hour last night, mostly because I pee too much. I feel like a sloth today. I’m having some shortness of breath that isn’t helping either. I’m having some headaches that come with vertigo and feeling lightheaded. They make my neck hurt too. I’ve had them before. They’re not too bad this time but they make it really hard to concentrate. They make the brain fog a lot worse. They get worse when I look down for too long. Sometimes they make my muscles feel weak, and they make my teeth hurt. They’re weird headaches and they feel awful. I’m pretty sure they are vestibular migraines. When I can rid myself of the headache/neck ache, all the other weird symptoms go away too.

I’m taking more vitamins. I went up on my iron and started taking D3 softgels instead of tablets. They seem more effective for some reason. I get more achy at night when I don’t have enough D3.

I’m backing off on the ibuprofen. Mostly just to see what happens.

My BP seemed a bit on the low side today. I’m gonna try going back to my usual dose of Florinef. Maybe it will help my energy. It might give me more headaches. I don’t know. It’s a medical Rubix Cube.

I had a minor stomach flu on Monday. It wasn’t really that bad but I still don’t feel 100% yet. Today I would normally do my Humira shot but I’m gonna wait an extra day to make sure I’m over it. I’m kinda too tired to deal with stabbing myself today anyway. It’s an easy process but the injector pen is painful.

I’ve been using restasis eye drops for a few years. My eyes used to feel so sticky and dry. I’m taking a break from them now. I feel like every time I use them they make my eye feel irritated all day, which seems counter-productive. I’m using Pazeo allergy eye drops now and they seem to be taking care of the irritation and my eyes don’t seem to feel dry even though I stopped the restasis. I’m still not wearing contact lenses that much but I am able to actually wear them when I want to. Mostly I’m just too lazy to put them in.

 

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4 Comments

  1. Hey Jill!
    I have already left you a comment some time ago… I’m the girl from Germany. (:
    I have been to two more Rheumatologists and the 3rd one wanted to do bloodwork once again. This time I was ANA positive, but in a low titer… I don’t know how to translate… I guess they were “finely speckled” (?)… Lupus antibodies were there, but none of them out of the reference. But SM antibodies were also there…
    My doctor didn’t really explain to me… he said “It’s not lupus.” And: “I’ll see you in 6 months.” I asked him many questions… I wanted to know where else my symptome come from, but he just told me not to worry, not to search or read anything on the internet and to enjoy the good days. >.<*
    Now I still don't really know, what to do. I take Ibuprofen when I'm in pain… but it doesn't help for the other symptoms.

    Sorry to read that you meds won't work as they should… -.-* Have you heard about the thesis of heavy metal causing autoimmune diseases…? Maybe that's something you could get tested for… If the meds don't really work for you.

    Take care!

    totenkopfschabe

    • Totenkopfschabe, I remember you! I wondered how you were doing with the doctors.
      I’m sorry you’re having a hard time getting doctors to listen. Lupus can be difficult to diagnose, but based on your blood tests and symptoms, I still think lupus is a possibility. Even though you tested low positive for ANA and antibodies, you still tested positive. Symptoms are a very important part of the diagnosis also, and you seem to have a lot of symptoms. The criteria for a lupus diagnosis includes both blood tests and symptoms, and a doctor who only looks at blood tests is definitely inexperienced with lupus and autoimmune disease.
      The worst Rheumatologist I ever visited told me not to search anything. She diagnosed my lupus but was not interested in treating it. She wanted me to only take ibuprofen and prednisone.
      I think you should search the internet, and also keep searching for doctors, and don’t stop until someone helps you. I know you must be tired of visiting doctors, and it can be incredibly frustrating. You don’t have to keep living undiagnosed and untreated. It’s not safe and it is unnecessary. It bothers me that the doctor had no explanation for your symptoms at all.
      I am hopeful that you will find a good doctor that knows lupus and autoimmune disease in general. Sometimes finding a good match takes a while. Don’t give up on it.
      I am disappointed with the performance of the Humira. I think I was mislead a little bit about what the medication actually does. It does help my stomach pain though, and I am grateful for that relief. But I am very tired from it. I am hoping with time the fatigue will wear off. I am also investigating some other pain management doctors.
      Write to me anytime and let me know how you are doing!
      Jill

  2. Hey Jill,
    thanx a lot for your answer! You are the reason I did not completely give up on the lupus thing… because many of the symptoms you described matched my mysterious problems, that I’m having for quite a long time now.
    Did I tell you what my symptoms are…? I can’t remember…
    Anyways… Do you really think Lupus is a possibility while none of my antibodies are out of control? What about your bloodwork?
    I can’t really interprete my bloodwork… I looked up everything, but I’m still not sure. C3 and C4 are low, CRP normal, Lymphozytes a bit low, … and ANA’s – as I said – measurable, but not raised.
    My problem is, that I really don’t know who I could ask or speak to… There’s not really a german lupus online forum/platform anymore.
    There’s one doctor specialised on lupus about 1.5 hours away from my home, but as I called her, she said she wouldn’t take any more patients… Only choice I have seems to be trying other rheumadocs and hope, there is at least one who can help me.
    I’m so insecure… Sometimes even me thinks that maybe all the symptoms are produced by my brain… psychic… I don’t know. I’ve heard that so often now… I almost believe it.
    Today I’m feeling good. Only little pain. But the days before my eye hurt really bad… my head, my muscles, my back. And I had this strange brain fog over and over again… and red spots on my skin when I was in a warm room.

    The vertigo thing you have sounds really, really bad… You don’t really know, where it comes from, do you? Chiari has been ruled out, right? Do you have a good radiologist? The only thing that comes to my mind is either a problem with the cervical spine, a problem with the blood flow in the brain (carotis or vertebrae) or inner ear (like morbus meniere…?)…
    I can only recommed curcuma… I know you don’t think these natural things help, but for me it did. It’s reducing inflammation and makes my head feel better. I’m also not feeling that “hot” anymore as I take it regularly. Maybe it’s worth a try… It doesn’t have any side effects. (:

    Take care and I hope you keep on doing art! It can help a lot to cope… :3

    totenkopfschabe

    • Hello! Sorry for the late reply.
      Given how similar our symptoms are sometimes, it’s hard for me to deny the fact that it sounds like you have lupus. Blood test results are frustrating. I wish you could find a doctor that would focus more on your symptoms. Your ANA really shouldn’t be positive at all. I’ve heard the “it’s in your head” or “it’s anxiety” a lot too. But it doesn’t make sense that your thoughts could make you have a rash, or pain. It’s not like you want those things. That’s what I tell myself when doctors treat me that way. I don’t want to be sick, so why would my head make it up?
      The vertigo comes and goes and sometimes the flare lasts a month. I’m pretty sure it has to do with my neck, because my neck pain is bad when the vertigo is happening and when I look down to try to read a book it gets much worse. They have told me I dont have chiari even though my brain is a bit low through the foramen magnum. I’m not sure what to think about that.
      I have tried feverfew for headaches and it did seem to help. I don’t take it regularly though. Thanks, I will look into it.
      I am doing art when I can! Take care of yourself, I hope you can figure some stuff out soon!

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