I'm wondering if anyone has the problem I occasionally experience. I am 37 and was diagnosed with SLE in 2002. I have been fortunate in that I have mainly had only joint pain, skin issues (rashes, general skin pain), oral and nasal ulcers, and a few other mainly mild issues. I do also have a blood clotting disorder, IBS, Tourette Syndrome and Polycystic Ovary Syndrome.
I occasionally have an issue (it happened this morning, which is why I am writing now, while it is fresh in my mind) in which I just get very WEAK. My arms and legs feel like they are very heavy, and it is difficult to move them. Raising my arms takes a huge effort, and I have noticed that when I do raise them, I tend to keep them close to my torso and kind of rest them on my chest.
I drag my feet / shuffle when I walk, and I stumble and weave. I can imagine I look like I am drunk. My speech is also slurred. It's very hard to keep my eyes open...my girlfriend and I call that having "froggy eyes", because that's kind of what it looks like.
This morning, my alarm went off for me to get up to go to work, and I had a horrible time getting my eyes to open so I could get up. I hit snooze about 6 times. When I finally did get up, I actually dozed off in the shower. I got showered, dressed and ready for work, had breakfast, and wasn't feeling too tired anymore, so I left for work. My commute is generally about 45 minutes to an hour, and by halfway there, I was so sleepy, I couldn't keep my eyes open.
By the time I got to work and got out of the car, I was already shuffling my feet and walking slowly, and was just really out of it. I did manage to get my computer on in my office and deal with one email before I kind of got into a stupor. I stayed there I guess about an hour before I finally gave up and went home, which was probably not the brightest idea because I probably shouldn't have been driving.
I got home, made it to bed, and slept until 3:30 this afternoon. I am feeling better now, as I usually do when this happens and I go to sleep. This did happen to me one time at work a couple of years ago, so badly that I couldn't move or talk clearly, and my co-workers ended up taking me to the emergency room. All kinds of tests, and nothing, of course. Just told me to go home and rest, which of course I already knew.
Anyway, sorry to go on so long, but I'm just curious to see if anyone else has this problem, and if they have any insight into if it is related to lupus. I have a rheumie appointment in a few weeks, so I will ask again anyway, but sometimes it's good to compare with other people who actually have the same things happen. Thanks for reading!
Honestly, the symptoms that you described sounds more like Parkinson's Disease. You should look into it. It is more neurological. The shuffle you describe sounds like the typical Parkinson's shuffle. You should make an appt. to see a neurologist in the near future.
Hi. I'd also wonder about "basic" things: blood sugar levels, thyroid function, etc. In the bloodwork your rheumie presumably does, does he also track this "basic stuff", as well as the "rheumie stuff"?
Are endocrine problems common in PCOS? Do you see an endocrinologist?
I feel as you describe sometimes myself. Sometimes I can logically guess why---like this week, when 1/2 the people I know are fighting flu-like symptoms...
Anyway, I hope you get insight soon. Good luck! Sincerely, Vee