Monday, February 21, 2011

Got the good drugs

I had my visit with the Rheumatologist today.  It's the first time I've seen one in perhaps 7 years?  It was a long time coming.  She took a thorough history and did a basic examination on me, looking at my joints and various tests.

My main concern over the past year has been the fatigue, body aches at night which cause me to have trouble going to sleep and my concentration.  The concentration problem as been a huge concern for me.  It takes me weeks to finish a book because most days I can only read about 5-10 pages at a time.  On a good day I can get almost 50 pages read and that is awesome.  I am constantly second guessing myself at work because I feel so foggy a lot of the time that I convince myself I have done the wrong thing.  It's mainly things with entering things into the computer; not really the main part of my job. My memory used to be so sharp and now I have to make sure I write things down when I remember.  The other thing I have noticed if I want to say something and I have trouble remembering a word, I actually have to picture the word in my head before I will be able to say it.  It is incredibly frustrating.  I don't think it is noticeable to the person I am talking to but it can be a huge effort for me to have a conversation, especially if I am asked something. There are rare occasions that I will have a good day and feel awesome.  They are few and far between but when I do have them I remember the day very clearly.  On those days I actually feel invincible.  I feel bright, free of tiredness, excited, very clear headed.  I feel like I could fly almost!  The last time I had one of those days was last year in September.  I actually still remember the one day about 17 years ago I woke up and felt amazing! I had a long sleep and woke up feeling full of beans, ready to just jump out of bed and tackle the day.  I wish I could have those days more often than once every few years.

One thing I did remember to ask her was about diet and autoimmune diseases. I have read in a few places that nightshade vegetables (such as tomatoes, eggplant, potato) are bad for people that have inflammation based health problems such as arthritis and lupus.  My rheumatologist said there is no truth to this claim so I am able to eat these vegetables freely which is wonderful news.  Eggplant happens to be one of my favourite vegetables!  

The outcome of the visit was that she thinks I'm in the group of people that have Lupus but do not have the full blown disease of organ involvement etc. but do have chronic low grade inflammation that causes the symptoms I am having.  I certainly am thankful that I don't have the disease that bad and am able to work, go to the gym and function day to day.  I have been prescribed hydroxychloroquine 400mg per day and ibuprofen as needed.  I currently take ibuprofen most days to get to sleep.  The bonus was I got them on prescription so I got a huge packet (180 x 200mg pills) for $3!  The hydroxychloroquine is slow acting so will take about 3 months to kick in but I am hoping it will improve how I am feeling day to day.  I am especially hopeful that my mind will clear up and I won't feel so much like a fumbling idiot.

Finally, I do think that lately these symptoms I am having are having a big effect on my motivation and training.  As I am so fatigued most days I do have to force myself to go to the gym.  The interesting thing is, unless I have having a particularly bad day, I am still able to perform in the gym.  Like I said to my rheumatologist today, although I am less active than I used to be, I can actually do the activity but it takes a lot of willpower to get up and do it.  Finding that willpower every time I need to go to the gym is exhausting in itself.  Imagine having to fight yourself every time you needed to go to the gym. Ugh.  I want the days back where I wanted to go.


  1. o good lord. I know mine is only temporary and not quite the same as yours, but I truly do know how you feel. I can't concentrate on anything at the moment my mind is jumping from one thing to the next and it feels like my heart is grinding against my ribs. yay for good drugs. wish mine were a bit better than what I got. hope the fog clears soon. =)

  2. I actually find the concentration thing really annoying. Having your mind is just so important! Mebbe you should go back to the doc and ask for "the good drugs" :-D
    That heart thing does not sound good :-/

  3. I really sympathise - that sucks, although as you say, it is good that you are still able to keep going to a certain extent.

    Mum's got Lupus. Whatever they say, she has found a huge improvement by avoiding or controlling certain foods. When she then eats the foods which make the inflammations worse again she feels like she is falling into a drugged sleep where she can hear what is going on but can't speak, interact or think clearly to respond and definitely can't keep her eyes open.

    Have you come across the Paleo Diet? I really recommend you try reading Loren Cordain's "The Paleo Diet" and Robb Wolf's "The Paleo Solution" - especially the Robb Wolf one - and see what you think. There's loads of stuff on the internet about the diet but Robb's book really explains far more clearly than most online articles and sites why certain foods cause autoimmune issues. The book also gives you the understanding to try the diet in a way that should help you.

  4. I've heard of the Paleo diet but have not read any books or anything in depth about it, apart from knowing the gist of the diet. I do like the idea of eating lots of fruits, vegetables and lean meats and at the moment that is pretty much what I am doing with my diet. I still have a little dairy but trying definitely to stay away from processed foods (which are mainly grain based).
    Thanks for the recommendaton though, I have requested the book from my local library. Here's hoping I can get through my other books before it comes through!!

    Re: diet, I definitely believe in everything in moderation. I've never noticed myself to be sensitive to any food in particular. The only food that I remember giving me a terrible problem was prunes. I was in so much pain from eating them that I have not eaten the since the incident in case it happens again.

  5. Ugh! I can't imagine. I hope the drugs help immensely!!! I'm sure it is really frustrating, but at the same time really makes your thankful for what you can do.

    I heard the same thing about nightshades and inflammation, too. Mainly on Paleo blogs/podcasts. I don't follow paleo, but there is a great podcast and blog over at . I always learn a lot when I listen to him... and he's very entertaining -- that helps! LOL! :)

  6. Hi Genie. Thanks for your well wishes. You are right, I am thankful. I am trying to read up a bit more about the inflammation/nightshade link but interestingly, if you search on pubmed you don't find anything. Perhaps it's all anecdotal or just theoretical?