This morning at 9:am I had my first Rheumy appointment. I must be sicker than I like to believe, because he kept repeating, "Yes, that's fibromyalgia ... that's fibromyalgia .. .and that symptom is fibromyalia ..." I'd barely told him the half of it at that point, but he just kept nodding his head. I was a little mystified, actually, because I thought I was sort of GOOD for fibromyalgia and that this would take him the whole hour, and a whole of tests before he uttered those words. I'm relieved, but not used to this.
He spent at least an hour with me. Amazing.
I bought along a 6 or 7 page chronology of all the major illnesses, accidents and injuries since 1980. I listed all my symptoms. I listed all the things I currently do to help myself. He actually READ it all right in front of me --- but asked me first if I'd prefer to tell him, or have him read it.
(I said him reading would be faster.)
I also printed out three web site reports detailing that viral study for chronic fatigue and let him keep those. He'd only heard a headline but was glad to have more details. The only negative was that he sort of dismissed the idea that it could be viral, because he explained when these illnesses were new, they'd given patients all sorts of antivirals and it made no difference whatsoever. He did say new antivirals might be different - but he really didn't think it was viral. (Personally I'd like to follow the research as I'm not sold it isn't viral yet.) He did talk about
neurological causes - which I thought were brilliant and made loads of sense - but in my fog I can't currently remember the details to repeat them to you.
He definitely thinks ibs is an extension of fibro - in that it is overstimulated .. umm.. did he say nerves endings or whatever? (Brain fog - sorry!) I know he talked about
genetic defects or weaknesses or predisposition, too. (fog!)
He is running loads of blood work to rule other stuff out - autoimmune, arthritis, etc, but he said he really feels confident those will be negative and it is true fibro I have.
My creepy crawly sensations, especially at night, seemed a big hit for his criteria - and I didn't know it was that big of a deal. (Not restless leg, just fyi.)
He had interesting thoughts about
family histories. One thing we talked about
was how in the old days, someone might be an alcoholic and they'd say the alcoholism is the reason for their health being bad. When in reality, those people were self medicating with the alcohol BECAUSE their health was bad ... and often it was fibro. They said in the old days they'd say, "Well that person also works hard labor - that's why they feel that way and drink so much" - but it was fibro undiagnosed. That actually describes my father! My father and his mother had terrible stomachs, too. Interesting, no?
One negative - if it didn't relate to fibro, he dismissed any mention of other problems, like my hives. I sort of would have liked to have wrapped up a few other issues, but I guess specialists are like that. He did say though that people who have dermatographic uticaria (skin writing - or hives from scratching the skin) tend to show up often in fibro - it is just another example of the overactive neurological or whatever word he used. (I wish my brain had better recall!!)
I could go on - but I better wrap this post up so you're not reading all day.
He told me to take at least 1,000 to 2,000 units of vit D per day. He offered me Savella - which he said he completely understands if I do NOT take with my extreme chemical and medicinal reactions.
I did not ask about
disability at this appointment because the timing wasn't right. However, I don't think it will be a problem if I ask him to back me up when I do apply. So I feel good there.
Lastly, I have to laugh at his nurse. While she was extremely warm, I'm not sure if she was the sharpest tool in the shed. I'm down to 113-114 pounds after being so danged sick. She said, "If I were you, I'd be eating milk shakes night and day - round the clock!" I said, "Lactose." She said, "Oh, well then PIZZA! Eat it for breakfast, eat it all day long - and milk shakes, too! That's what you should do." I just stared at her in total shock. This is a nurse? Well, at least she was friendly!!
Overall, it was a good appointment. My only qualm is that he is very medicinally oriented for solutions, but at least he understood with my sensitivities I have to watch it. He was really blown away when I told him how little of tylenol and benadryl make an effective dose for me.
I give it all a thumbs up.
Why my username? It is real life nickname. I love chickens. Will have my flock of hens one day! :D .............. DX'd with Fibromyalgia, chronic hives, sensitivities and allergies, migraines with auras, tmj, and IBS. Not sure what else!
Post Edited (TheChickenPrincess) : 8/24/2010 11:53:37 AM (GMT-6)