I posted earlier this week after seeing my neuro, an appointment where she seemed to literally confuse me with another patient.
One thing I forgot to mention in my post is that I brought a typed log of my symptoms, both to help with my cog fog, and because I can no longer write more than a few words without my hand spasming or giving out completely.
At the beginning of the list (for no reason, really) I had "extreme fatigue, especially between 2 and 6 PM". This was the only symptom she noted as she put the list in my chart, and she said, "you probably have fatigue from sleep deprivation, which is most likely causing your seizures as well. Or maybe you're just tired because of lupus."
I tried explaining this was debilitating fatigue- I'm a solo parent of two kids under 5 with medical issues, I know how it feels to be chronically sleep deprived. This is fatigue that makes the idea of getting out of a chair seem insurmountable. When it hits, I pretty much can't do anything but lie down (often in the floor, wherever I happen to be) and try to get my batteries charged enough to move again.
She wasn't understanding, so I said it felt impossible to move my limbs. She said, "I know, you just said you have weakness in your arm and leg." And I do- but this is quite different.
I'm trying to make sure I'm being clear and accurate with my language, as I'm seeing my rheumatologist Monday, and she's my best hope for getting some symptom relief, if possible, while I wait for my lupus meds (I'm on plaquenil, methotrexate and will soon add rituxan) to have an effect.
I know a lot of this is subjective (how many times I heard "pain is what the patient says it is" in nursing school! ), but I'm curious to hear what terms others use.
For me:
Weakness. I've had it in my right arm and leg for 10 months, and it got significantly worse in late July, never has returned to baseline. Some days it's actually to the point where I'm dragging my leg. My arm feels almost disconnected from my body- sort of the same feeling you get after hanging from a pull-up bar for a long time. If I try to hold my 29 lb two year old, my arm simply gives out within about a minute.
Fatigue. I compare it to the horrible GI bug I had last winter- I lost 10 lbs in 3 days, slept on the toilet, ended up needing 3 bags of IV fluids to rehydrate. When the fatigue hits me, I am at it's mercy. Right now, the kids are both sick- I got a very mild cold, but my neuro symptoms are much worse, and the fatigue is getting more frequent. It's almost like an invisible wall is set up somewhere, and when I run into it, I simply can't keep moving anymore.
Now, when I'm walking and my thighs turn to jelly and I can't walk anymore- is that muscle weakness? Fatigue?
I know there are meds that can be used to combat the fatigue. What about muscle weakness? I've been on prednisone for a few months now, and it certainly *improves* the weakness, but I can't stay on pred forever.
(FWIW, I've found plenty of discussion of the same sort of fatigue hitting lupus and MS patients, but actual muscle weakness- not pain- seems to be uncommon in lupus, so I'm not finding much about it anywhere.)
One thing I forgot to mention in my post is that I brought a typed log of my symptoms, both to help with my cog fog, and because I can no longer write more than a few words without my hand spasming or giving out completely.
At the beginning of the list (for no reason, really) I had "extreme fatigue, especially between 2 and 6 PM". This was the only symptom she noted as she put the list in my chart, and she said, "you probably have fatigue from sleep deprivation, which is most likely causing your seizures as well. Or maybe you're just tired because of lupus."
I tried explaining this was debilitating fatigue- I'm a solo parent of two kids under 5 with medical issues, I know how it feels to be chronically sleep deprived. This is fatigue that makes the idea of getting out of a chair seem insurmountable. When it hits, I pretty much can't do anything but lie down (often in the floor, wherever I happen to be) and try to get my batteries charged enough to move again.
She wasn't understanding, so I said it felt impossible to move my limbs. She said, "I know, you just said you have weakness in your arm and leg." And I do- but this is quite different.
I'm trying to make sure I'm being clear and accurate with my language, as I'm seeing my rheumatologist Monday, and she's my best hope for getting some symptom relief, if possible, while I wait for my lupus meds (I'm on plaquenil, methotrexate and will soon add rituxan) to have an effect.
I know a lot of this is subjective (how many times I heard "pain is what the patient says it is" in nursing school! ), but I'm curious to hear what terms others use.
For me:
Weakness. I've had it in my right arm and leg for 10 months, and it got significantly worse in late July, never has returned to baseline. Some days it's actually to the point where I'm dragging my leg. My arm feels almost disconnected from my body- sort of the same feeling you get after hanging from a pull-up bar for a long time. If I try to hold my 29 lb two year old, my arm simply gives out within about a minute.
Fatigue. I compare it to the horrible GI bug I had last winter- I lost 10 lbs in 3 days, slept on the toilet, ended up needing 3 bags of IV fluids to rehydrate. When the fatigue hits me, I am at it's mercy. Right now, the kids are both sick- I got a very mild cold, but my neuro symptoms are much worse, and the fatigue is getting more frequent. It's almost like an invisible wall is set up somewhere, and when I run into it, I simply can't keep moving anymore.
Now, when I'm walking and my thighs turn to jelly and I can't walk anymore- is that muscle weakness? Fatigue?
I know there are meds that can be used to combat the fatigue. What about muscle weakness? I've been on prednisone for a few months now, and it certainly *improves* the weakness, but I can't stay on pred forever.
(FWIW, I've found plenty of discussion of the same sort of fatigue hitting lupus and MS patients, but actual muscle weakness- not pain- seems to be uncommon in lupus, so I'm not finding much about it anywhere.)
Comment