Frustrations

lymphatic fault, carpal tunnel, Sesamoiditis, Tendonitis in Foot, hot tubs, spas, jacuzzi, mattress toppers, cold weather, daily lymphedema management, Bandage Wrapping, Wrapping and Rolling

Moderators: Cassie, patoco, Birdwatcher, jenjay, tkincheloe, Senior Moderators

Frustrations

Postby romans8girl » Fri Mar 12, 2010 9:50 pm

I guess I'm just getting on here to vent a little bit! I've had the lymphedema diagnosis for 5 years now and from the end of my first therapy session (which lasted eight weeks) until now I've never felt like I have control of it. I am coming near the end of my second therapy bout and my legs look just ok from the knee down. I now wear biker shorts for my thighs. My knees and thighs seem to be getting worse even though I am doing self massage every day. My lymph therapist didn't really want me to wrap my thighs - she thought that they would fluctuate so much that all I would be doing was re-wrapping, so she suggested biker shorts. I guess my point is I do everything I'm told to do and it just gets worse! I know I'm not the only one who feels this way...but I guess I feel tempted to give up - if doing what doctors prescribe doesn't work then why bother? Oh well, thanks for letting me vent! If anyone has any suggestions or insight I would love the input!
Thanks!
romans8girl
 
Posts: 4
Joined: Sat Feb 20, 2010 3:28 pm

Re: Frustrations

Postby patoco » Sat Mar 13, 2010 11:20 am

Hey Romans :D

Vent all you want, we understand, absolutely. Just hang in there and don't let the discouragement get you down or stop you from trying to manage your LE. it's been that way for years now with me and all that is going on. We seem to find something that helps and then "boom" - it stops helping.

Now, this is just me...but if i were you and the therapist didn't say NOT to wrap the upper leg, I might try doing it to see if it may help after all. You may well have to rewrap a few time a day, but if it helps bring down the swelling, then it would be worth it.

The therapist should be aware that without any compression, the thighs are going to get large and are going to swell more.

Big hug to ya.

Pat
User avatar
patoco
Site Admin
 
Posts: 2175
Joined: Thu Jun 08, 2006 9:07 pm

Re: Frustrations

Postby romans8girl » Sun Mar 14, 2010 3:33 pm

Thanks for letting me vent and for the input! I'll have to have some more discussions with my therapist to iron out this issue with my upper thighs. She really is very helpful! I know in my head that I can't stop "working" on my lymphedema, I would end up in a hospital pretty quickly I'm sure, but my emotions get in the way quite often. It's all about balance I think. I try to balance being a good patient and taking care of myself with quality of life, enjoyment etc. :D
romans8girl
 
Posts: 4
Joined: Sat Feb 20, 2010 3:28 pm

Re: Frustrations

Postby Queenie EJC » Mon Jun 28, 2010 9:04 am

My entire legs were wrapped in MLD. Biker shorts don't provide adequate compression, as you've discovered. I used them too but for the area above the thighs and abdomen. I have a Flexitouch machine (http://www.tactilesystems.com) and would highly recommend regular use of this machine once you've finished MLD treatment. This mimics lymphatic massage and is quite effective if used regularly. It also makes life easier for you. At night, I use full length Reid Sleeves on both legs to sleep in. Custom made Elvarex stockings during the day are the Cadillac of lymphedema garments as well. All the best to you. I'm sure we all share in your frustrations. It's an ongoing battle, for me - 26 years. The trick is to stay one step ahead ahead of it and avoid infections as well. As the skin becomes healthier, the infections decrease.
Queenie EJC
 
Posts: 19
Joined: Fri Jun 04, 2010 10:51 am


Return to Our Daily Lives with Lymphedema

Who is online

Users browsing this forum: No registered users and 1 guest