Did you have to give Pilocarpine time to work? I did try it, but didn't notice a significant difference. Maybe I should go back on it.
I take Allegra 180 without the added D, which is the drying part. It really helps.
Oh, and to piggyback on what SK said, there is a really good article on the top 10 things a person with a chronic illness wants you to know. It says it better than most. I think you can find it on this pages FB page but I will look for it too. It talks about how fast pain and fatigue can hit and that just because we were fine this morning doesn't mean we are now. It actually covers a lot of ground. That may help them too. Some people will just never get it though sadly. My ex was one of them....yuck. After awhile you just stop explaining and do what you know you need to do.
Pilocarpine does not help! So frustrated!
I also have trouble sleeping for more than one reason 1. My brain won't switch off 2. All over pain from the osteoarthritis 3. The top of my left leg is now very painful at times. It hurts to lie on that side and if I lie on the other side there is no place to put my leg that doesn't hurt. In the morning getting out of bed is difficult and then putting my weight on it. It eases after a while. I am waiting for a scan to see what the problem might be. Luckily it comes and goes. Last week my Rhumi suggested I should ask my Dr. for a slow release version of my pain tablet, Tramadol, as the effects of normal tablets wear off before morning. 4. Just to make life more exciting, I also have Ekbom Syndrome (restless legs)
My best cures for sleeping are a hot bath, A hot cup of tea, Ice cream or an ice pack. They all sound stupid.
My Husband doesn't believe SS exists. It's all in my mind. I wish it was.
I have moaned long enough.
My thoughts are with you all.
Ali,
To quote my husband...People are not not going to understand. They are never going to get it." He was talking about my siblings. Because most of us do not complain out loud and hide our pain, no one understands. But who wants to walk around all day complaining. I am just grateful that I am not paralyzed nor in a wheelchair.
Cleveland Clinic's suggestion today was to add Melatonin. Ask your doctors to prescribe the amount correct for you.
If this does not work for me, Passion Flower will be added. The M.D. was livid that I was taking Rx D2. "It's toxic. It has to be D3."
It fries me that I have to drive 5.5 hours one way to get proper medical care.
May they find the cure soon for all of us!
ROFL, David….. one particularly crazy morning I was getting into my car for work I realized I was well dressed but still wearing slippers. Haven't' actually left like that though. So far so good.…
And yes, certain teas do help. As do things like comfy things for bed. Good suggestions.
I also use a nature sounds app on my phone at night. The difference in my quality of sleep when I use it and when I don't (or fall asleep with the tv on) is profound. Of course some nights, nothing works which is just part of the fun of SS.