My DDs are swollen and painful from my lower spine around my hip and down the outside of my thigh and the outside of my knee. I have been trying ice bags. I have used moist heat before. I think the ice is doing a better job but the pain is so intense it is hard to tell. I can barely walk with my walker the last few days. What do you all use heat or ice?
Definitely heat.
My internal thermostat is a mess. I just went to the kitchen, then to the bathroom, then back to bed with the heating pad on my frozen feet. My circulation tests out fine, but I get cold at the drop o a hat, regardless of the temperature.
I used to take hot baths often, but now it’s way too difficult to get out of the tub. I’m hoping we can get some kind of tub when we remodel next year that works for me - I’m told the tubs with the doors can be a leaking mess - but it sounds so wonderful!
At this moment I’m in bed with knit sheets, a blanked, a comforter, a night shirt, a bed jacket, and the heating pad on my feet. Every once in a while I get so cold I have to toss a blanket around my shoulders, too.
So, because I’m so cold all the time, heat definitely feels better than cold, unless of course it’s the heat of summer, when my goofy system reacts the other way and I don’t want to be anywhere but in the pool! 
I’m sorry you’re having such a rough time. Do you have a wheelchair, as well?
me
Thanks for answering me. I sweat like crazy. Strangers come up to me and ask if I am all right. In the summer I am wet all the time. I carry a wash cloth with me. It is soooo embarrassing. I used to have to speak in front of groups and I would be sweating away. In the winter my feet are ice cubes. My body has no idea of how to control temperature. I just had one of my 3 day migraines so last night I had an ice bag on my head and ice bag on my leg and was covered up with a warm blanket.
Of course I had the usual two pillows to support my shoulder and the one for between my legs. I got everything situated and then I had to sit up. I could not stand to lay there. I grabbed the walker and tried to figure out how to sit up without using my right leg (I sleep on the right side of the bed). I did it despite the pain and used my foot massager sitting on the bed. I also had my back massager going sitting behind me on the bed. My husband brought me the usual three beverages: ice water, diet pepsi and a styrofoam cup of ice to use during the night. My tongue sticks to the roof of my mouth so I have to drink during the night. I took my “nighttime” pills last night I took a double dose along with the Excedrin PM and slept a couple of hours. I had to redo everything when I laid back down I just tried to print out the DD and lymphodemia info for the endocrinologist tomorrow he never heard of DD of course.
I used my walker and went into the bedroom with the printer. I badly stubbed my second toe on the stupid wheels on the office chair. The first page jammed and I cut my finger trying to pull the stuck page out. My husband brought me first aid stuff and my blood sugar kit so as not to waste the blood that was dripping down my finger…I needed a blood sugar anyway. When I go tomorrow they like to download my results. As I dropped the kit in their tolit giving them a urine sample last time…they won’t get much from the new meter. Now I am safely back in my rocker. I don’t know why I even try to do anything. Every time I get out of my chair, bad things happen! They are retesting my thyroid tomorrow as it was bad last time. Why do they have to do everything twice? It is so hard for me to get in there. Yes, I have a wheelchair scooter and an electric wheelchair and a manual wheelchair that I can’t use as I do not have an elbow on the left side (it shattered in a fall). So I say…Let the good times roll!! It is either laugh or cry!
Grandma S
I use both heat and ice, depending on where the pain is. Ice seems to work best on hot spots like my lumbar area, back, and hips.The lumps there tend to be hot, so ice is good. Heat works better for me on the extremities. Those areas seem to be cold already. I think it is different for everyone, though. You just have to experiment.
I have the same problems with my internal temperature inconsistancies. I sweat like crazy in the mornings when I am getting ready for work, I can never get my hair dry enough before I have to go outside in the cold. Then later I get cold and my skin hurts to be touched even my clothes hurt my skin. So it sounds like we are all in the same boat. At first I thought it was the normal hot flashes that go with menopause. After my hysterectomy that was rough. But I had it under control for a while but I am back to not knowing how to dress because I am hot and cold all the time.
In the office I work at we have always said ice is for trauma, heat for chronic pain. Or do 20 minutes of cold then hot and go back and forth for however long it takes to calm the pain down. The acupuncturist in our office who is a very smart lady says heat is better for this type of pain, so that is what I do for the most part. But with bad headaches I always use ice, it keeps the swelling down.
But whatever works for you is what you go with. This is one messed up disease and while we are waiting for answers we got to do whatever we can to get through it. The more we share the better we are equiped to deal with it.
Have a blessed day from one hot mama to another!
Brennie
Sylvia,
I sweat like that too and, yes, strangers ask me if I’m alright all the time. It is very embarrassing. I have the same night time problems but I have an adjustable memory foam bed with a built in massage feature, so it is much easier for me to get arranged into bed. I do still put a memory foam pillow under my knees because those beds are made for taller people so the bend isn’t at the right place for me. A bed like that would help you an awful lot.
I am not yet in a wheelchair. I usually walk with a cane, but can manage short distances and time(maybe 10 minutes) without it. I am very clumsy though, and recently broke a toe while putting on my house slippers. (kicked the coffee table) It would be funny if it wasn’t so miserable…