I am at a point where I think I will go out of my mind for sure. Don't know how much more I can take. The neurologist office just called and changed my appt from Oct 13th to Nov 14th. I do understand on that day she isn't going to be able to give me a diagnosis anyway, but the symptoms seem to be getting worse & more bizarre. Of course with that and the fact that I have lupus, I am very frustrated.
Seems everything I try to do, I hit a brick wall. For the time being, my lupus seems to be doing well. First time in a long time. Have not had to take prednisone since July, which is rare for me. But the muscle thing and other symptoms are really keeping me down. Saturday, I tried again to work a little in the yard, since our weather is gorgeous. I was sitting down on my gardening stool with wheels. Of course sometimes I had to get up and a few times, I had to bend over to pull a tougher weed, but not a lot. Then I had to clean up my mess which required some walking, bending and pulling the yard waste can. I probably worked about 1 1/2 hrs and I did not overheat like I normally would. However while cleaning up, I did get a little hot, but not bad. Well, every time, I did anything which stretched my leg muscles, I would become so weak, I would get the shakes again and feel very tired all over. Once in the house, I rested for about an hour before trying to take a shower. I had the water just barely warm, but legs were still very tired and weak, but thought I would be okay. NOT!! While washing my hair, felt like my arms would fall off and my legs were way to weak to stand. I got the shakes so badly, just had to stop. Felt awful rest of day and slept all day Sunday. Literally, all day and all night until Monday morning.
I keep hoping it has something to do with a not to active lifestyle for a while and I keep trying to exercise and I keep failing. I even got a sign off from my primary care doctor to start exercise program at the hospital which is part of physical therapy unit, but is a program to build up some strength. Problem is, if I even flex my legs to stretch those muscles, something happens. I haven't been confined to bed or totally inactive which would cause weakness. But had to stop with my walking 3 yrs ago, because the problem with weakness & worse fatigue started. One day I could walk 2 miles & the next day, I could not walk one block. It has continued to get worse from there.
Would you have such a hard time just stretching your legs? It is virtually impossible! I try so hard to strengthen my legs and it isn't happening. It affects my arms the same way, just worse on legs because I have to stand with them. Today arms & legs have been so weak & tired I am useless. I don't know if I should go ahead with trying the program at the hospital & hope it helps or wait until I see the neurologist. The cost of the program is $35 a month, which would be well worth if I could do it, but I'm afraid I can't and it's not like I have money to throw away. I lift my legs & try to flex the muscles every morning before getting out of bed and about 3 times is the max & my legs feel like they are going to fall off.
I know you can't tell me what to do, but my question is, would MS make your legs so weak with just trying to stretch your leg muscles? Why so hard to just wash my hair? How do you handle this? Lupus is worse enough, but this along with the lupus, it's tough. I just want to feel better. HELP