Sunday, December 11, 2011

Lupus and Rheumatoid Arthritis (feeling sick from something forever and not knowing what it is)

I am so annoyed with my body right now. It has caused me so many problems for so many years, I can't even begin to explain the situation in one blog post. I rarely try to explain it to anyone at all, actually, because few people seem to be open-minded or knowledgeable enough to understand things like chronic diseases which are not visible with the naked eye, and the fact that these diseases can destroy a person's ability to function, even when she doesn't "look sick". Suffice to say, I am doing alright mentally now, but not physically. And I haven't really been feeling well physically in months. The situation, over the years, has waxed and waned, where at times I was literally bed-ridden, and at other times, I was feeling okay. But I have basically been physically ill for 15 years.

They told me about 15 years ago that I had Fibromyalgia. Then I read about Chronic Fatigue Syndrome and its connection to Fibromyalgia, and after many tests, which were looking for things like Rheumatoid Arthritis, Multiple Sclerosis and Lupus, I was eventually told I had Chronic Fatigue Syndrome and Dysautonomia in addition to Fibromyalgia. Then, it was also Sjogren's Syndrome. Now, it's not uncommon to have these things together, so that's not the odd part. The odd part is that I have always had symptoms come up that would indicate there was probably something more going on, like an autoimmune disease such as Rheumatoid Arthritis or Lupus. In 2004, I saw a rheumatologist who told me I had RA. I was so psychotic at the time that I didn't do much about this situation then. Years later, living in a different area (the area where I live now), I found another rheumatologist (this is the third or fourth one I've seen), who I've been going to now for about six years. She has been thinking that perhaps I had Lupus, or Mixed Connective Tissue Disease, but she hasn't ever officially diagnosed me with anything other than Sjogren's. She seems to think that the name of what is wrong isn't that important. But, I WANT TO KNOW what the real problem is once and for all, and I've been having problems for enough years with my health to know that there are enough signs to diagnose by now with one of these autoimmune illnesses. I have learned enough over the years about my own self, and about these illnesses, to understand that when I start feeling like I feel right now, likely something is wrong that I do not have a diagnosis for.

My rheumatologist told me two days ago that she had never seen my joints in my hands look like they look right now, over the years that I have known her. I said, "Yes I know, they also never felt like this before now in my life." They hurt. A lot. And so do my elbows, and my feet, and my knees, and my shoulders and my back. I have absolutely no energy. I am back to this state where I have no energy to clean or to do things that I want to do. I don't think I am going to be able to make it to work tomorrow if something doesn't change really fast, because I can barely function. This is not a good situation to be in.

My doctor sent me for blood work again. I can't tell you how many times I've had bloodwork done to check for autoimmune diseases. I literally can't tell you because it's been done so many times I have no idea. I have at times shown positive signs for an autoimmune disease (which is how I got diagnosed with RA), and at other times, my blood work has not shown a definite anything. That's how people remain in limbo like this for fifteen years, because of bloodwork.

My doctor seems to think it is more likely Lupus now, or at least, that is what she said. I don't even care what it is now, I just want to know what it is so that I can get proper treatment for it. See, not knowing what is wrong means I am not on the medications that would slow down the progress of the disease. I used to be on a drug called Plaquenil, which is used for both Lupus and RA, back when I was showing stuff in my bloodwork indicating an immune system problem. Now, she said she will put me back on that right away if the bloodwork shows any immune system problems at this time. Personally, I am not sure if this is the right approach. I feel so sick, and I am so worried about it getting worse, that I would like to just go back onto the medication because even though I hate being on a ton of medications, and feeling like a walking pharmacy, RA can lead to joint deformities if it is left untreated, and at this rate, if I have it, it has gone untreated for most of the past 15 years. That's kind of a problem.

If it's Lupus, from what I understand, it might not be as progressive as with RA, and it probably won't deform my joints. For this reason, my doctor said she is hoping it is something more along the lines of Lupus. I have never hoped that I would have such a terrible illness before, but I guess if I have to choose one I would go with that, I don't know. Either one is a pretty negative situation. I don't want to be sick for the rest of my life, but looking back on the past 15 years, it is pretty obvious that I probably will be, especially if I never find out what is definitely the problem.

The difficulty in diagnosing autoimmune diseases is notorious. It took years for me to be told I had Sjogren's. I was first told it was "probably Sjogren's" by an eye doctor in 1999, but I was never told it definitely was there until about 2006 or 2007. Sjogren's is an autoimmune disease that can occur either alone, or as a secondary illness to another autoimmune disease, most often Lupus or RA. It causes dryness of the eyes and mouth. For the eye dryness, I have had tiny, punctal plugs in my eyelids since 1999. This allows me to be able to see and read, along with using Restasis drops about five times a day and artificial tears. I don't complain about Sjogren's. It could be worse, as it is for many people who have primary Sjogren's. But I don't think mine is the primary kind. I think it is more likely the secondary kind, and the question is what it is secondary to. I would really like to know.

Hopefully the eight vials of blood taken on Friday will lead to some kind of answers, and I hope that my doctor can understand that I need to know what is wrong at this point, because I really don't want to have to find another rheumatologist just to get a definitive answer. I like the one I have, but she hasn't known me for most of the past 15 years, and I don't think she understands how frustrating this situation is.

Further, guess what else Lupus can cause? Psychosis. And I just had a psychotic episode in the past couple months. So it would surely be nice to know if these physical and psychiatric problems were actually related. I will probably never find out the answer to that.

Also, it would be nice if I knew someone who was capable of understanding that I had these problems. Because nobody in my family understands. My family is prone to thinking I'm some kind of hypochondriac because of all these health problems, and I can see how someone would think that after this much time has gone by with various ailments. But I'm not a hypochondriac. Actually, if I cared more about my health, I would probably be talking about it quite frequently and going to doctors every week. I don't even have a primary care physician. I hate going to doctors, because of this very problem - you go in with an invisible illness and you come out being told nothing but that you need antidepressants. I am not depressed. I am weak, and fatigued severely, and my joints are sore and swollen and inflamed, and my stomach is upset all the time, and I can't sleep at night, and light bothers me. But I am not depressed. I am also not a hypochondriac. I am quite sick of that misnomer that is always applied to women who have mysterious illnesses. This is why I almost never talk about feeling sick. Generally, people will think you are feeling sorry for yourself and you are not really sick at all, even when that is the furthest thing from the truth.
The funny thing is, autoimmune diseases run in my family, and it is my family who totally fails to understand. Other people don't even know in the first place, because I have already experienced enough lack of understanding when I do tell people that there hardly seems to be a point in bothering anymore. When I do tell them, they typically say nothing at all, or say something like my ignorant neighbor who just told me to take some vitamins because he "likes to see people with lots of energy!". Yeah, and I said, "I like to be a person with lots of energy too".

6 comments:

jenji said...

I believe you and I know loads of other people who have gone though the very same things that you're facing who would also sympathize.

A few questions:

-Do tend to have fierce migraine type headaches?

-Do you have IBS ish symptoms?

-Have you been tested for Lyme Disease?

-Do you have Raynaud's and/or poor circulations; always cold hands and feet?

Best,
jenji

Kate Kiernan said...

I believe you too Jen. I think you have the patience of a saint. My brother has a friend who suffers from Lupus. She's only 27 years old and has had this condition for quite a few years now. He treats her with loving concern. I don't know much about the illness other than your body attacks your body somehow and your energy level is way low. What kind of treatment is there for it? I hope you get a definitive answer and some relief from your suffering.

Jen Daisybee said...

Thanks Jenji,

In answer to your questions: I don't have fierce migraines, but I have severe joint and muscle pain. And sometimes it's not severe at all. It comes and goes, but now I have joint pain every day.

I was tested for Lyme when I first got sick in the late 1990's. I don't know if I've been tested for it since then. I've had many tests over the years.

I was told I had IBS around 1996, and I still have the symptoms.

I have peripheral neuropathy in my legs (diagnosed at Mayo Clinic), which is related to poor circulation, though I don't thnin kit is Reynaud's specifically.

Kate, there is lots of treatment available for Lupus. I drug I used to be prescribed called Plaquenil is one of the disedase-modifying drugs that are used to slow down the progressikon of RA and Lupus. I might be going back on that, depending on what my bloodwork says.

Jen Daisybee said...

sorry for all the typos in the above comment. I have a very sloooow computer, so sometimes that happens!

Sherry Sherod said...

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Jorge said...

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