Lots of questions

I started my lymphedema treatment the last week of March. Things haven't been going so well this week, and I have lots of questions.  First, I seem to lose ground when I exercise. Before treatment, I would use my semi-recumbent exercise bike 20 to 25 minutes, three times a week, along with 20 to 25 minutes of weights. Am I going to have to give up the exercise bike? I cut it in half to start, with my legs wrapped, but I seem worse the following day. Does the fluid just move, and build up somewhere besides your legs? It seems like my panni is getting bigger, and while I lost five lbs. over the first two weeks of treatment, I've gained half of that back. Finally, anyone have rash problems? It started with little red dots on my skin in the areas that were wrapped. Now I've got the red dots on my upper legs, my arms and my chest.  I see my therapist again tomorrow, but I'd really appreciate hearing from others on their experiences in these areas. It's been a bit disheartening to see my progress slipping away. Thanks, Pam

Pam, I wish that I could help you, but I am going to start my treatments at the end of summer.  The therapist that I am going to told me that a bike is good.  She also recommended Pilates and Yoga, low impact stuff.  I know there is a lady named Amy who is a part of the OH family and she is a weatth of information.  I am going to be talking with her real soon. Do you also have the lymphadema in your pannus?  Have you had the surgery?  Do you get cellulitis? Good luck.  Keep posting as I would like to follow your progress

I did have gastric bypass surgery about 16 months ago and have lost 203 lbs. My lymphedema/lipedema is located in my lower legs, so that is all that we have been treating. As you learn about clearing the lymph system, the gut is a major player in the process, so my PT thought that some of the fluid we were trying to clear was sitting in my panni. She has showed me some additional clearing exercises for there, and it seems to be better.  Still no answer on the rash.She thinks that it might be a sign that we have overwhelmed my lymph system with the treatment, but even though I have reduced my wrapping to one leg at a time, the rash is still there. I've got an appointment with my doctor this afternoon to see what she thinks about it.  I have had two bouts of cellulitis. The last one wasn't a very severe case, but the one years ago put me in the hospital on IV anitbiotics for six weeks. Not an experience that I care to repeat. The most discouraging thing is losing the progress that took four weeks to make in a matter of days since I've only been able to wrap one leg at a time. Not to mention that each treatment is a 270 mile round trip. I like living in a small town, but it sucks when you have to travel so far for medical treatment. Good luck with your treatment. I hope everything goes well for you.  Pam

Pam,

Have you had anymore luck with this? I just wanted to say that exercise in some instances can really effect your lymphedema in your legs. If I do too much with my legs in the form of exercise I have this problem and they tend to swell on me even more. This is a very unforgiving condition.... Sigh..

If the circulation is not going well with the therapy then it can move to another area of your body such as your panni or chest or arms. Just keep your therapist informed. As much as the wrapping is a pain, it was well worth it. Also remember that sometimes when you do therapy the area that has accumulated the protein based fluid from the LE is a base for bacteria to form and sometimes it can wake things up and cause infections to develop. Usually antibotics are very helpful, but can cause cellutitus as you have had. Don't give up, I know it is a pain, but the more you try the better your outcome can be for you.

Amy, Well my doctor didn't know what was causing the rash, either, and agreed that it might be a system overload, but that unless it got worse to just wait and see what happened. It's slowly been getting better, but it's still there. I am back to wrapping both legs so I'm making progress again. And I've started back on my exercise bike, but for only ten minutes at a time and will see how that goes. Between the not exercising and not wrapping, I've been putting weight back on. Granted, it's only three pounds, but after so many months of losing weight, that seems like a lot! My PT did give me some additional massage for my abdomen to try to move things along, but now I think that some fluid is building up on my upper legs, which weren't a problem before. I'm not looking forward to having to wrap the upper legs, but I don't want to give up on this! Thanks for your insight into things, and I will keep an eye out for any sign of infection.  Regards, Pam

When you have the massage done, are they doing your complete body and not just the abdomen?

Yes, we're doing a full body massage. My PT showed me a more extensive massage to do myself than what I was trained on initially to try to keep anything from building up in the abdomen area. She thought that given my surgery, that might help things move better.

Just continue as much as possible and I hope it continues to improve for you. My legs still swell often and I need to watch them closely.