As for hiking I live in a very flat ugly part of the state in a small town and walking a block or two seems like I mile to me and am out of breathe quite easily anymore. It stinks that I go from lifting 100 pounds to not being able to hold a few clothes on the hanger very long anymore. Opening jars and stupid cups with lids is sometimes a problem for me and my 6 year old ususally can get it. So my pride in the past month or 2 has been totally crushed ( and I have a lot of stubborn pride thats for sure).
I get the muscles getting weaker thing, I can be fine all day and then at night be walking to the back door to smoke and my right leg just gives out either at the hip or the knee. Or it starts shaking really bad and feels like at anytime its just not going to hold me up anymore. My husband went and traded our car in so if we do go somewhere out of town and my body starts acting up he can fit the wheelchair of my grandparents in the back of the truck. (GREAT there really goes my pride at 36)
He even sometimes has to undress me and put me to bed cause sometimes I can't get my right leg into the bed or my stupid clothes off. UGH! Not having too much pride left thats for sure!
i was using the bowflex but found like others it made me feel weaker and instead of being over the soreness from working out in a few days it takes my body weaks to get over it, which I don't think is normal. And since I am so prideful (cause I have a body building husband) that working out with 10 lbs seems kinda whimpy to me and I end up pushing myself to the max limit. I don't want anyone to see me lifting 2 or 10 lb dumb bells that would be embarassing! So I gave up on that too.
PITTS my fav, dog there is no dog on earth like PITTS. They are truly the most loving I have 2 Chance who we rescued from someone who was using him as a bait dog, who is great with my kids and when I am sick won't leave my side. Trouble we got when he was a baby the person couldn't feed the puppies anymore and well I should have given him a different name he has lived up to his thats for sure but still a good boy. When they used to say that Pitts where a nanny dog. I understand why. My dogs watch my kids so well and can't stand for the kids to go anywhere without them or out of their site. They are truly human parts of our family and I take care of anyother breed after having two and they are work out to play with that is for sure. Almost pulled me down the other day trying to play tug of war with them. LOL!
I look forward to reading more posts from everyone.
And please I post something crazy somewhere that doesn't make since, (like I just found one before this) please keep in mind I think my lupus is playing with my brain or the bleach has truly gone to my brain and I am now a true blonde. LOL!
Muscle problems are my biggest complaint. My joints used to hurt, but the Plaquenil seems to have that under control.
My calf muscles are in a constant spasm, and now the thigh muscles are tightening up too. Sometimes a sudden spasm will pull me to the floor if I'm caught off guard.
I also have very weak hips. It is just plain difficult to turn over in bed.
One of my docs thought that it could be Spastic Paraplegia, but I saw a neurologist who is an expert on that a few weeks ago, and she ruled that out.
She and her team are scratching their heads, since it is definitely "something neurological" going on.
It seems that a lot of us here at WHL and on the Sjogren's World site seem to have these complaints, so I'm thinking that it is a part of either Lupus or Sjogren's. I thought that rheumys were supposed to know about this, but mine just keeps saying that it isn't and swearing that SJS is nothing but dry eyes and dry mouth. I wish that there was a doc out there who really understood our diseases!
I'm at the point with my rheumy that I only rely on her for prescriptions. (My last appointment was four minutes flat!) I'm waiting until we move back to Texas to ask my good rheumy back there all of the questions that I have.
If anyone gets a good explanation about the muscle pain, please let me know!
I have all the same problems you do. My hips, muscles in my legs and walking is so difficult sometimes it hurts so bad it feels as though my hip is going to give out. My doc says its my back, but it isn't the same every time it hurts and sometimes doesn't hurt as bad or at all. I guess it depends on my lupus or sjorgens. My doc also says the same thing about sjs your does. I went to a rhuemy that said there was nothing wrong with me in a 5 minute visit. My pcp finally diagnosed me. with all this wonderful stuff. Funny thing is I'll go months with the diagnosis of lupus and reynuads, sjs and then Ill go back in with pain and she changes it. I am just sticking with the lupus wegner's doesn't sound that much fun either. Guess I could have both who the heck knows. You are right it would be nice to have a doc that understands our disease and illness. I keep praying for one. Hang in there. I love sharing this stuff it really does help.
I answered your PM.