The Diagnosis Dance

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It has been a rough week for me, and I can’t even begin to explain everything I have felt. There are so many things that have run through my head, and so many emotions, I am exhausted from turmoil and relief at the same time. When you are in the diagnosis process for illnesses that seem to be one thing, but turn out to be another, it is such a frustrating thing to endure. Last week I had blood drawn for an ANA test, considering I have multiple symptoms for the disease lupus. Come Monday morning, I was informed that all tests were negative, and my immune system is actually looking pretty great right now. The Dr requested that I come back in and have my treatments readdressed. He would like to discuss a few more things with me that have not been gone over previously. I was unsure of what he meant, but I assume that he was going to look at other diseases and illnesses that I might possibly have. Safe and accurate assumption.

Once I was in the office, my Dr looked at me with distress. He reviewed the blood tests, and let me know that they have improved quite a bit over the last few months, and he might eventually start weaning me off some of the meds to see if my body can handle that. However, he is concerned about the body wide pain, and the edema, so he doesn’t want to distress my body again. We went over some of the possibilities, including that perhaps there is another hidden type of auto immunity, as the ANA did not rule out the possibility of additional rheumatic illnesses. 16.photolibrary_rf_photo_of_doctor_talking_to_patient Again.. however.. he does not think that is what it is. With a sigh and slump he started to go into an explanation of how the brain perceives pain, and how the nerves work. He explained the relation of nerves to bone pain, and additional joint pain. Confirmed that the arthritis in my knees is going to cause me to need surgery one day, and there is little I can do to stop it, though I can slow the process down, as previously discussed. At the end of the explanation, he recommended that we start treatment for, but do not diagnose me yet, fibromyalgia. He put me on a new medication, and explained that this was something that should help with the pain if it is neurological. We are going to start off with 350mg, and go up to 1200 over the next 5 weeks. If it seems to be helping, I will then be referred to a neurologist, and he will begin the process of diagnostics for fibro. If it does not work, we will take steps for other diagnostics.

As for the edema that I tend to suffer almost daily, he has no explanation for that. Everyone’s body reacts differently to stress, and it may be that this is how my body is reacting to the pain I am suffering. Since I increased my salt intake, my sodium levels have evened out, and are looking fantastic. There should not be edema from sodium issues. My kidneys are looking good, and I have general normal functionality of all my organs at this time. I simply need to keep taking in as much salt as I can in general, and increase it when I see additional edema on top of my unexplained edema. If this does not work, we will look into other ways to address my edema, but he also wants to keep me on the current diuretic I am on, as it seems to be helping.

I know that to some this seems like good news. At least it is not lupus, and I am not going to suffer the additional ailments that would come along with such a serious autoimmune disease. Trust me, I am very relieved. But the relief was very brief, as the possibility that this will be a pain that will likely never subside, but continuously affect me over time. It is still a lifelong illness, and still a pain that is going to add to the already effective pain from my arthritis. Fibro is very unpredictable, much like autoimmune diseases, and the pain can fluctuate with the weather as well. This would explain the deep bone pains, the aching, the fatigue, headaches, muscle sensitivity, etc. There are so many different illnesses that all have the same symptoms, it is quite a frustrating and painful process to find not only what is causing these ailments, but also how to treat them. It is not only exhausting as well, but so very expensive! As a single mother, I am having the hardest time keeping up with all of the bills I am acquiring and receiving. I can’t recall which bill was for which hospital, or which Doctor. What bills to look over for errors, and which have been paid already. I am doing this all by myself, and over the last month, it has become overwhelming. I have no idea how I am going to keep this up. How long do I have to do this?

After I left the office, I went to the pharmacy (where they happen to know me by first name now) and picked up my new medication. The look on the face of my pharmacist was the same look I got the last time we added to my meds. He has learned not to crack any jokes, or make any comments, as he will get a snippy/sarcastic response from the already irritated woman in front of him. When I arrive for refills, there is a pleasant exchange of words, however NOT when I am picking something new. Is it sad that is also known by him? I feel like it is. I shouldn’t dwell on things like that, however I cannot help it. Once I got home, I walked through the door, up the stairs and laid on my bed, face down. I slipped out of my pants, and slid a long cotton skirt over my tired legs. This is something I have gotten into the habit of lately. I either slip into a pair of cotton pajama shorts, or a skirt, depending on my mood. That day I was already feeling exposed, and I needed a sense of comfort. My oldest daughter was home and noticed that I was not so pleased. She offered to walk the 5 blocks to the daycare where my two younger kids were still playing and bring them home. I nodded my head, and without saying a word, she left on her errand to fetch the babies. I hate crying about things when my kids are around, and I hate feeling sorry for myself, however I could not help it. Once again, I was feeling like we took a few steps forward, but one step back. I think I shall refer to this as the “Diagnosis Dance”. A painful waltz where you are never the leader, and have no choice but to stand on the feet of your illness, be spun around, dipped, and thrown about in ways that turn your stomach. I don’t want to dance anymore. I just want to sit this one out, and rest my body. I am so tired of dancing.

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3 thoughts on “The Diagnosis Dance

  1. Hi…..well…..I have an equal mix of relief and sadness for you after reading your post. Also I understand your mixed feelings, because I’ve been there. I’ve been borderline lupus & RA for 32 years. I’ve had fibro for 32 years. I know there is more going on in my body right now, but no one can figure out what. But enough about me. As I read your post, I was trying to think, what, if anything, is the good part of all this. And I think it is this…..one thing you can feel good about, if that’s even possible (I know you are having a hard time and don’t want to make some stupid comment like Don’t worry, Be happy or some shit like that)…the one thing I’m thinking is this: Thank god you have a doctor who is interested enough and smart enough to know/understand/believe in fibromyalgia and recognize that this is what he believes this is. Back when I first started having unexplained pain when I was in my middle 20’s, it took them two years of testing, testing, testing, along with calling me a liar to my face, telling me I was only depressed not really ill, that I was a hypochondriac, etc….and even throwing me in a psych ward for 3 weeks….before they finally figured out that I might have that thing called fibromyalgia. It was such a relief, at first, to know for sure that I was not a nut case but truly physically ill…..but the relief was short lived when they told me there was no cure. All they could do was give me drugs and tell me to pace myself. Anyway…..back to you…….(I’m sorry, just reading your post brought all my old diagnosis stuff back to my mind)……I’m just saying…..I know how hard this is. I know that you’ve already been through so much and you are carrying many heavy burdens on your shoulders. You are caring for three little girls, by yourself, working a job, trying to make a living when you are in so much pain and feeling lost…..and now this comes along. I’m glad it’s not lupus, but fibro is no picnic either. I understand how devastating another illness on top of everything else must be for you. But hang on to this….it sounds like you have a competent, well informed, interested doctor that is doing his best to figure out what is going on. He is running all the right tests, he is working hard to try to help you, and we can be thankful for that, most definitely. I know it’s hard to find anything good right now. I don’t want to be one of those people who tell you to smile when all you want to do is punch a wall. Because I hate that. LOL But I’m just thinking back to how it was when I was diagnosed, and it was so very different then. I hope the medication works for you. I hope somehow the pain calms down and you can find some relief. I am rooting for you. You deserve something good to happen for a change, and I hope that something good comes soon. xoxoxo

    • I have to say I thoroughly enjoyed your comment. I know that there are so many things that others know that I don’t, and vice versa. You can only learn to handle these things one step at a time. This was thrown into my lap, and as much as I hate it, I have no choice but to push through it. I dislike it very much, but the worst thing I can do for myself and my children is to give up. The small amount they have put me on is helping a bit, or at least I feel a bit less tense. I double up on Monday. We’ll see how that goes.

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