I think this is the longest I have been out of remission. I almost always go out in March but this year faked me out and started the beginning of April. I lost most of the fluid but now up and down by three to four pounds a day and then back as the weather improves. My temperature controls feel damaged and I am either too hot or too cold. Trouble sleeping the past several nights due to numbness and tingling down both arms. This season is so bad due to the barometric pressure and all the rain. There is joint pain with this also. One day I can bounce up out of the car and the next I am like someone's 90 year old grandmother. I know this too will pass but it sucks while it lasts doesn't it?
I saw Dr. Check this time and he gave me another article. I have been hearing from some of you in my emails. One woman has a support group for the Uticaria that accompanies this disorder. Fortunately, I haven't had that this go around. I have been eating so much better that I can still get in my clothes even on the bad edema days. Let me know how you are experiencing this time of year with this syndrome.
I have finally gotten rid of all the fluid. I must say though this time when I had the fluid, I was able to get around and it did not stop me. I love the Vyvanse and I only took 30mg a day when out of remission. If I took more I may have done better. I try to limit my trips there and at least no shortness of breath or other symptoms except some fluid. I know other people suffer much more with the amount of fluid they gain. It is like 8 pounds for me. I don't know how people manage with 20 or so pounds. I certainly wish there were alternative medications that could work as well. If you find any please share as for now this is the best I have done so far. The weather is nuts and when it rain I put on 2 pounds almost automatically. I am doing so much better than with no medication. The extremes in the weather over the past year have made it more difficult but I am keeping better track of weight so I can catch it and add more medication. No side effects at all with the Vyvanse which is also good. Just don't let them put you on any diuretics as the rebound effect is wicked. Best of luck to you in Denver. Keep in touch.
Sorry to hear you haven't been doing well lately! Unfortunately, I'm having a similar experience. I was in remission in the fall and winter, and all of a sudden the swelling is back and nothing seems to help. On the days the swelling is especially bad, I have so little energy I can't do much more than sit on the couch. I moved to Denver in the fall so I haven't seen Dr Check in a while, I'm thinking about looking for other specialists to see if there's an alternate treatment method that might work.