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redstringsoul
06-11-2012, 10:03 AM
Hi! Just dropping in to say hi! My name is Michelle :) I've been dealing with joint pain for nearly all of my adult life. Around 20 years old, I would have episodes where some joints would swell up for no reason, as though I injured them. After a few days of being unable to use the joint, everything would go away and I was sure it was all in my head. Doctors never believed me because by the time I could get an appointment, whatever swelling or pain had been there was gone!

Fast forward another decade and these episodes started happening more and more. Meanwhile, I was tired all the time. And I mean -- All. The. Time. There were days I could barely function without a nap so I supplemented with lots of coffee. My husband and I figured that I just needed to lose weight. But whether I was heavier or lighter, the episodes would still happen.

One family doctor took a routine panel and discovered I had an elevated ANA and referred me to a rheumatologist. I got scared at what that could mean and figured that I hadn't had joint pains in awhile, so I was fine. Honestly, I was afraid of being diagnosed with RA and being put on steroids which would make it impossible to lose weight.

Finally last year, I had a flare so bad that it took my entire left leg out of commission and made me feel absolutely horrible. I couldn't walk, I couldn't sleep, I could barely function. Again, I called my doctor but by the time I got in to the office, all the symptoms disappeared. I was so frustrated. But yet another physical before the episode had also confirmed an elevated ANA and again was referred to the rheumy.

I got an appointment with the rheumy six weeks out! He did an exam and a blood panel which ruled out thyroid and RA (to my surprise; I really thought it was RA) but then he speculated that it may be lupus, which I hadn't thought about at all. At the time, I did not have a rash but I also did not go outside a lot (I'm your classic indoors geek) or many of the other classic lupus symptoms so instead diagnosed undifferentiated connective tissue disease.

He gave me Plaquenil, which I did not take as directed, because I figured -- if I'm not sick, why take anything? I was convinced that it was all in my head. I decided to try to lose weight to "fix" myself. On my follow up visit, I got scolded pretty thoroughly for not taking the Plaquenil, with the rheumy reminding me that no, it's not in my head, that I do have an autoimmune disorder, that diet and exercise won't miraculously fix it, and that medicine can't work if I don't take it. Ooops.

I recently changed insurance and started with a new rheumatologist. Again, I haven't been taking the Plaquenil (I'm really bad with taking meds; I took it for two weeks and then... forgot...) but I did notice that I am having photosensitivity with rashes on my neck (though not my face) and that the tips of my fingers turn purplish when it is very cold. The new rheumy examined me, looked at my labs (even though I had a negative ANA recently) and made the diagnosis. He said that my previous rheumatologist had been conservative in his diagnosis but that after reviewing the previous doctor's notes, he saw that he was actually going towards the lupus diagnosis. With recent events, my current rheumatologist felt comfortable making the SLE diagnosis official.

So here I am, after nearly 15 years of wondering why the hell my joints ache for no reason, with an answer. The diagnosis last week coincided with a week long episode of fatigue and joint pains -- at least now I know why! But at least now I have a roadmap to what is happening to my body and a plan on how to deal with the pain. Honestly, I'm still having trouble wrapping my head around the idea that I do have a chronic illness, and likely have had one for years. I don't like the idea of it. I want to be well and it angers me to think that even if I do get in shape, the joint pain, the fatigue, the foggy brain will likely never go away. But I also recognized that I'm lucky because, by all accounts, my lupus is mild. It hasn't affected my organs AFAIK and while I may not be able to prevent that forever, I'm still relatively healthy otherwise. So at least that's something to be positive about.

tgal
06-11-2012, 11:40 AM
First let me welcome you to WHL. I am glad you are here and I am glad that you now have an answer. Now then, you are going to get some hard truth from me.

You could very well die from this disease. Harsh? Yes, but I think you need to hear it. You don't have to die from it like people did 50 years ago but you are choosing a path that could lead to that. The longer you stay off the meds the more damage you choose to have your body endure. Just because you are not "feeling" anything happen doesn't mean it isn't happening. There are meds now that can, for the most part, keep this disease in check. They may not make everything perfect but they can often stop the organ damage and allow you to live a pretty normal life.

I won't lie and say the meds are fun. They aren't. They are much better than the alternative though. I was kind of like you. I had been sick for a long time but I didn't like doctors and I didn't do medicine so I just ignored everything. I ignored it until I couldn't ignore it any longer and by the time that happened the disease had affected my brain and I have seizures and short term memory problems to the point that I had to go on disability. I now have no insurance and am currently out of many of my meds because I can't afford them. I am watching my body fall apart again but it is not by choice this time. I would give anything to take those meds I hated in the beginning. I know I am playing a game of Russian roulette by not taking all the meds I should be taking but there is nothing I can do about it right now. You can't say that. You are playing Russian Roulette just for the heck of it... because you don't really like medicine and you don't want to be sick. That is a dangerous game you are playing right now and I am worried for you.

You say you want to be well again then you are going to have to get pissed enough to fight it instead of ignore it. You can beat this disease. You may not have the same life you thought you would have but it can be good one if you do everything you can to get well. Plaquenil is the first line drug for Lupus. It takes months to work (3-5 in most cases) so trying it for two weeks doesn't really show you anything. You are SO lucky to have a mild form of Lupus and it is very possible the plaquenil, and possibly a low dose steroid, may be all you need to resume a normal life. However, Lupus is not a disease that will be ignored. If we try and ignore it then it just starts attacking somewhere else and you have no control over where that is.
You are risking your health, and your life, by not doing what you need to do.

Now, having said all of that... I know this is hard. Learning that you have a Chronic disease is almost like dealing with a death. It is the death of the life you thought you would have. There are 5 stages when dealing with grief (5 Stages of Grief (http://psychcentral.com/lib/2006/the-5-stages-of-loss-and-grief/) )and you have been in the first one... denial. It is very normal. You have to get over that one quickly though because I want you to get healthier. I want you to stop the progression of this disease before it takes even more from you. I want you to beat this thing. If you take the meds you may not have to deal with the joint pain, the fatigue and the foggy brain all the time. The medicines do help. Some people go into remission for several years at a time and only have to stay on the base meds (like plaquenil). I want you to be one of those but you have to do your part and get angry at the right thing. Get angry at Lupus and be willing to do whatever it takes to kick its butt (no, butt is NOT what I wanted to say).

I really am glad you are here. We can help you travel this new path. You have joined our WHL family today and you will never be alone again if you don't want to be. Sorry I started this off harsh but I didn't know how to make you see the importance of the meds any other way.

Derrie
06-11-2012, 01:37 PM
Hey, Michelle, I'm really glad you've joined us. And I am especially glad Mari posted what she did. It may have sounded a little intense, but what she said is so true. When you have a chronic illness, even one that appears mild, you just cannot mess around when it comes to medications. The job of "disease modifying" drugs like Plaquenil is not to instantly make you feel better; its job is to keep your disease under control so you have a better outcome over the long term. I know it can be a hard habit to get into, but I suggest figuring out the best way possible for you to remember taking your medications.

I have had success with setting my iPhone to give me a daily reminder to take pills, and I've also had luck with a "pill bowl" for the pills I take with meals (like Plaquenil). There is a small bowl (tiny, really) that stays on my kitchen table always, at the seat where I eat, and it has the meds I need to take with that meal in it. After the meal, I refill it for whatever meal is next, so when I sit down to eat, the pills I need are always right in front of me as a reminder. Once you get into the habit of taking your meds, it will be second nature, and you'll barely think about it. For example, I have taken a thyroid pill every morning for almost seven years. The first few months I'd occasionally forget, but now it's so routine that before my eyes are even open all the way, I'm fumbling around for my pill bottle.

I'm sorry you're experiencing the wonderful world of autoimmunity (har. har.), but I'm glad you've come here for support. As Mari said, we're here to help.

n.mac
06-11-2012, 02:44 PM
Like you and many other people I was not always good at taking my meds-for many years I would never finish a prescription-I would take the meds until I started to feel better and then stop.Used to drive my wife (who is my own personel RN) absolutely nuts.

I have learned through the shared experiences of wonderfull people like Mari the danger and folly of not taking meds as directed.

What helps me is using a couple of inexpensive plastic pill cases-each day gets two compartments-one ea for am/pm. Each case is good for a week.
I sit down every 2 weeks and fill the compartments. This helps me as I get up at 4:30 to go to work and there were times when I went to work and could not remember for sure if I had taken my meds-when you get in a routine of doing the same thing everyday I found that there were times when I thought I had taken my meds but I had not.
The pill case proves to be more reliable than my memory!

I really believe consistantly taking meds has stabilized my symptums-I know it can be hard at first as many meds like plaquenol take time(weeks or months) to show improvement

Take Care and Welcome! Niall

redstringsoul
06-11-2012, 05:02 PM
Thank you everyone for the welcome and the kick in the pants! I know that I've been lax with my medications and as I am learning more about lupus -- and scaring the pants off of myself in the process -- I'm starting to understand the importance of taking them. I had a friend in high school (early 1990s) who died from complications from SLE when she was just 14 years old. That had been my only experience with lupus and I struggled to understand it then and couldn't.

I'm known for yelling at my dad about his lack of adherence to his diabetes regiment as a type 2 diabetic but yet have had total blinders with my own autoimmune issues. I've always been the type of person who avoided taking medication as much as possible. I'm not too sure why/how I came to think this way but I'm trying very hard to stop it. I am glad to have found this place because I have a million questions and am happy to have found a group that understands.

magistramarla
06-12-2012, 09:35 PM
Hi Michelle,
I've been answering some of your other threads, but let me welcome you to WHL.
I live just down the road from you in the Monterey Bay area.

I have to agree with what the others have told you about meds. I was like you and never took anything when I was younger.
I've had to get used to taking my daily meds and supplements, and now it's just automatic.
Plaquenil may not seem to be doing anything right away, but give it time. It takes a few months for you to notice that it is working, but if you take it consistently, you will start to notice a difference.
Hugs,
Marla

SleepyInSeattle
06-13-2012, 07:46 AM
Smart people here - TAKE YOUR MEDS, and welcome! :-)