Posted 10/2/2014 7:45 PM (GMT 0)
Here I am preparing for my upcoming visits to the neurologist, rheumatologist and opthamologist the past couple days and as I'm adding (as I think of them or they happen) to the list of symptoms and questions I think to myself....what's the word I'm looking for...(darn brain fog)...oh yeah...a hypochondriac! I feel like a stinking hypochondriac!!!! I often wonder if that's what my rheumatologist thinks of me when I walk into his office and he says my labs look fine yet I complain of joint and muscle pain, fatigue, etc, etc. Anyway, this is my first time making a list of symptoms and questions aside from my very first visit many years ago and it's making me feel like a major hypochondriac. I'm sure he's going to be thrilled when I walk in his office with this list! I'm going to take the same list to all three doctors.
Symptoms:
tremors (pinky and thumb on Rt hand and thumb on Lt hand), memory problems (saying something like cat when I meant to say car, not knowing where I was when on my way home from dairy queen in my town of 2,500...yes 2,500; not 25,000, and having trouble having a conversation because I can't think of a word to or any word, for that matter, that means the same thing, when I'm trying to have a conversation), headaches/migraines (2 months with little spurts of relief now and then), nausea (off & on), dizziness/feeling of being off-balance (comes out of no where when least expecting it...like when I'm driving and turn my head to see if it's okay to get in the other lane, etc PS not a good time for this to happen), speech issues (using and/or writing letters in the wrong place, saying the wrong words in a sentence ie: cat instead of car, cap, cup or heck even something completely off the wall like pants), insomnia (something very new that happened last Sat & Sun night) and eye fatigue (muscles behind my eyes feel like they're being stretched to far), dry/itchy/burning eyes, restless leg syndrome (also in arms and shoulders) and burning or freezing feet (depends on how they decide to feel that day). Oh and the corners of my mouth were cracked and took 2 weeks to heal using abreva (didn't think it was herpes virus but used it just in case) and when that didn't work switched to triple antibiotic ointment. That only seemed to heal it a little bit and got to a point where it didn't do any more for it so I stopped using both meds. After another 4ish days they finally healed. Rt knee is cracking and popping and sounds like small rocks grinding against one another (a shot of pain will come out of no where occassionally).
Questions:
What can cause these symptoms? Are these neurological? Are these symptoms caused from the headaches/migraines? Can this be related to rheumatoid arthritis, lupus, ankylosing spondylitis and/or schleroderma (the four AI diseases that of which I have one positive blood marker for each)? If on plaquenil and meloxicam how do I still have joint & muscle pain? Can I have inflammation and not be able to physically see it? Can plaquenil make labs look normal? Can any of my symptoms be due to a vitamin deficiency? I take a daily vitamin & D3 2000IU, are there other vitamins I should be taking?
I've decided that just because I don't think something is related to an illness treated by a specific specialist doesn't mean I'm going to leave it off the list. The specific specialist may get more than he/she needs but more is better than not enough. For example, I didn't think it was necessary to tell my rheumatologist (well because of brain fog I could never remember to tell him any way, another reason I'm making lists this time) that I was having issues with my arms and legs falling asleep/tingly feeling/pins & needles. When I finally did, he ordered an additional blood test and found that my blood was clotting too quickly (lupus anticoagulant) and put me on a low dose aspirin at bedtime every night. As you are probably aware, clotting too quickly can have a number of negative affects (blood clots, heart disease, etc). That's when I realized it's probably more important than I think it is to tell ALL...just LAY IT ALL OUT THERE ON THE TABLE and let him/her be the decision maker of whether it's important or not. My job is to relay ALL of the symptoms and HIS job is to determine the diagnosis. Not that I have a diagnosis yet but we're working on it. lol
Now that it has taken me forever to write this because of all the time it takes to think of the words I wanted to use and fixing my typo's because my fingers migrate to the wrong keys I would like to thank you for listening to my rant of feeling like a hypochondriac.
Does anyone else feel like this? Feel free to share your feelings, rant away at me, or share your symptoms or questions you have for your doctor at your next visit. Heck, your questions may even help me add another to my list. lol Like it's not long enough already.
I would like to add that I am thankful that I don't have the pain that many of you have. And I am sorry that most of you have so much pain to deal with. I would say most of my days are achy but managable. There are some days that fatigue or migraines will keep me in bed but not all over body pain and for that I am thankful. I'm sure my day will come as I'm sure the day will come that I will get a definite diagnosis instead of "chronic myalgia" and "chronic arthralgia". I would like to put a name to whatever it is causing all these symptoms.
Thanks for listening,
Jen