A New Diagnosis... and Hope
I have mentioned my daughter on this blog several times. I have several mental and physical issues that I deal with... my daughter has more. She has fibromyalgia, dysautonomia, generalized anxiety disorder, major depressive disorder, and has a few addictions. This semester at school has just about taken her out. It has been very difficult for her to deal with, to say the least. But Friday something happened to give us hope...
Her old rheumatologist was a wonderful woman and we are thankful for her helping us figure out what was going on. However, she is pretty old-school and has resigned herself to saying that there's nothing that can be done for the pain of fibromyalgia, except for narcotics, which she won't give to a young person, especially one with a history of addiction.
This all makes sense but when my daughter is in so much pain she can't make it to class AGAIN, I always have to wonder if there is the possibility of something else out there that could help her.
Well, after the debacle of trying to make it through this semester, I became determined to find someone who could at least attempt some type of intervention for her pain. I asked around for recommendations (and was pretty discouraged by hearing that most people weren't getting help). However, there were a few doctors that I heard about that I thought we could try.
The first one not only seemed promising, he was in my area of town. So we did all of the work to get a referral sent to him by her primary and then we tried to make an appointment. Many messages were left before we finally found out they don't even treat fibromyalgia. So it was back to square one.
Another round of trying to figure out which doctor we wanted to try. I settled on one, made sure insurance covered his office, and then got another referral. Most rheumatologists have a several month wait for an initial appointment, so I wasn't holding my breath that she would be seen before the end of the year. I was wrong.
My initial call for an appointment was I think last Tuesday. I about fell out of my chair when I heard the receptionist say that someone had canceled and there was an appointment available this past Friday. WHAT?! I was so excited.
It was a relatively early morning appointment, which is really hard for my daughter right now, but I told her I would drive so that all she had to do was get up and put clothes on and stumble to the car. So Friday morning arrived and we left.
It was hard to find the office and it had been there awhile - it had that tired look about it. On the surface, I wondered if this was the best choice. But then my daughter noticed some of his awards - things like "Best Doctor in 20..." He had received many. I again had hope that maybe this could be good.
My daughter went back for vitals but then came back out into the waiting room. I had read some reviews and they all said the wait was long but was worth it, so I was prepared for that. It was long - but oh, it was so worth it.
We finally got back to a room and the doctor came in. He was older and seemed nice. He sat down at the desk in the room and started asking my daughter questions. It wasn't like an interrogation - more like a get-to-know-you kind of thing - but the questions seemed pretty random. He never mentioned her current conditions or asked about her pain.
After maybe 3-5 of these seemingly random questions, he opened a desk drawer and rifled through some papers. He pulled one out and handed it to us to read. It was a condition neither of us had ever heard of and a list of symptoms/associated diseases.
He went back to asking questions but we could see he was asking about the items on the list. She either had almost every item or had something similar. It was so strange because many of them didn't seem to be related.
So she has a new diagnosis: "Joint Hypermobility Syndrome". It really doesn't tell us much as far as treatment goes, but it's interesting how all of these unrelated aspects of her health actually go together.
So that was interesting but the information given really didn't tell us what could be done to help her go back to school without major pain.
Then he said the words we both had been wanting to hear but didn't think we ever would... "I have something that should help."
I almost fell out of my chair. What?! There's a medicine that will actually help her? While he talked I didn't know what to do - part of me wanted to cry with relief, another part wanted to shout, another wanted to get up and dance. I ended up just sitting there with tears in my eyes, listening.
He explained that there's a non-narcotic pain reliever that works for those with fibromyalgia at really low doses for some reason. It is a compounded medicine so insurance won't cover it, but it's not that expensive. Most big chain pharmacies don't compound medicines but thankfully the local one we use does.
We weren't able to get the prescription turned in until the end of the day Friday and they don't do compounding on Saturday so tomorrow is the earliest we can pick it up. Over the weekend, the doubts began... what if it works for most people with fibromyalgia but not with her? But I worked really hard to quelch those doubts and hope. It will take a few weeks because you start on a low dosage and move up, but maybe, just maybe, it'll work and she'll start to be able to actually live without pain.
Her old rheumatologist was a wonderful woman and we are thankful for her helping us figure out what was going on. However, she is pretty old-school and has resigned herself to saying that there's nothing that can be done for the pain of fibromyalgia, except for narcotics, which she won't give to a young person, especially one with a history of addiction.
This all makes sense but when my daughter is in so much pain she can't make it to class AGAIN, I always have to wonder if there is the possibility of something else out there that could help her.
Well, after the debacle of trying to make it through this semester, I became determined to find someone who could at least attempt some type of intervention for her pain. I asked around for recommendations (and was pretty discouraged by hearing that most people weren't getting help). However, there were a few doctors that I heard about that I thought we could try.
The first one not only seemed promising, he was in my area of town. So we did all of the work to get a referral sent to him by her primary and then we tried to make an appointment. Many messages were left before we finally found out they don't even treat fibromyalgia. So it was back to square one.
Another round of trying to figure out which doctor we wanted to try. I settled on one, made sure insurance covered his office, and then got another referral. Most rheumatologists have a several month wait for an initial appointment, so I wasn't holding my breath that she would be seen before the end of the year. I was wrong.
My initial call for an appointment was I think last Tuesday. I about fell out of my chair when I heard the receptionist say that someone had canceled and there was an appointment available this past Friday. WHAT?! I was so excited.
It was a relatively early morning appointment, which is really hard for my daughter right now, but I told her I would drive so that all she had to do was get up and put clothes on and stumble to the car. So Friday morning arrived and we left.
It was hard to find the office and it had been there awhile - it had that tired look about it. On the surface, I wondered if this was the best choice. But then my daughter noticed some of his awards - things like "Best Doctor in 20..." He had received many. I again had hope that maybe this could be good.
My daughter went back for vitals but then came back out into the waiting room. I had read some reviews and they all said the wait was long but was worth it, so I was prepared for that. It was long - but oh, it was so worth it.
We finally got back to a room and the doctor came in. He was older and seemed nice. He sat down at the desk in the room and started asking my daughter questions. It wasn't like an interrogation - more like a get-to-know-you kind of thing - but the questions seemed pretty random. He never mentioned her current conditions or asked about her pain.
After maybe 3-5 of these seemingly random questions, he opened a desk drawer and rifled through some papers. He pulled one out and handed it to us to read. It was a condition neither of us had ever heard of and a list of symptoms/associated diseases.
He went back to asking questions but we could see he was asking about the items on the list. She either had almost every item or had something similar. It was so strange because many of them didn't seem to be related.
So she has a new diagnosis: "Joint Hypermobility Syndrome". It really doesn't tell us much as far as treatment goes, but it's interesting how all of these unrelated aspects of her health actually go together.
So that was interesting but the information given really didn't tell us what could be done to help her go back to school without major pain.
Then he said the words we both had been wanting to hear but didn't think we ever would... "I have something that should help."
I almost fell out of my chair. What?! There's a medicine that will actually help her? While he talked I didn't know what to do - part of me wanted to cry with relief, another part wanted to shout, another wanted to get up and dance. I ended up just sitting there with tears in my eyes, listening.
He explained that there's a non-narcotic pain reliever that works for those with fibromyalgia at really low doses for some reason. It is a compounded medicine so insurance won't cover it, but it's not that expensive. Most big chain pharmacies don't compound medicines but thankfully the local one we use does.
We weren't able to get the prescription turned in until the end of the day Friday and they don't do compounding on Saturday so tomorrow is the earliest we can pick it up. Over the weekend, the doubts began... what if it works for most people with fibromyalgia but not with her? But I worked really hard to quelch those doubts and hope. It will take a few weeks because you start on a low dosage and move up, but maybe, just maybe, it'll work and she'll start to be able to actually live without pain.
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