Question:
Just told today I have Lymphedema, Dr. says nothing I can do

I just went to the doctor today and told him my concerns of the hardening areas on both my inner thighs and left side of my stomach. After examination he told me I indeed have lymphedema. My legs are not severely swollen and the areas are small, but when I asked him what can be done he told me nothing but to get this weight off soon. He said (best as I can recall) it was caused by my weight and that it is blocking my lymph glands and causing fluid to build up in my tissue and then hardening into the masses I feel. I was just so surprised by his answer since I have read so many peoples reports here on how they have had to use pumps etc. Is it that mine is so mild or is he just not sure what to do? I dont want to end up with my legs huge and so hard they never go down again. Any input? Anyone?    — Juanita N. (posted on October 3, 2003)

October 3, 2003
Hi Juanita: I'm sorry for you medical news. You didn't say if the doctor you went to was a pcp or a specialist. If you didn't see a specialist I suggest you do that asap. You'll get a better answer from someone who specializes in what you have. Sorry I'm not familiar with your condition, but I'm sure someone here will be able to give you more information. Good luck. S
   — sherry hedgecock

October 3, 2003
Thank you Sherry so much for your concern, it means so much! The doctor I saw is a pcp. As with a lot of insurance companys (I am assuming most are like me) I have to have a referral with mine to any specialist I go to.
   — Juanita N.

October 4, 2003
I too have primary lymphedema in my legs. My PCP doesn't really know how to do anything for it, so she sent me to a physical therapist who specializes in lymphedema. Within a week of therapy, my legs started looking normal again. Because i have fat legs, though, I am really unable to wear the stockings, but I do have the wraps and a partner who is a physical therapy assistant who knows how to wrap my legs. Find a PT who does lymphedema therapy-- getting the lymph glands to open is crucial. Good luck.
   — Susan R.

October 4, 2003
I too have lymphedema in my legs. I have had it for 4 years. Mine got too bad and nothing would help, now I wear custom fit stockings. They measure you for them and they are about 200.00 a pair, my insurance pays 80% of mine. Since you are in early stages a good physical therapist can help you do manual lymphatic drainage. It works. I am also taking lasix. Everyone is different. This lady I knew had it and she had wls she is down 130 lbs and her legs are 110 % better. Since my wls my legs too have gopne down. Hope this helps a little. Holly
   — Holly H.

October 4, 2003
If you have lymphedema then just loosing weight will not make it better. Your lymph nodes are working properly, and while losing weight may help to manage it, you need to get the fluid moving like it should. Manual lymph drainage may be the best option, since most insurance will cover physical therapy better than a compression pump. My legs were grotessly huge and I got a pump but that requires about 6-8 hours a day, so now I also see a PT 2-3 days a week for massage and compression wrapping. Trust me you DON'T want this to get worse....I went 2 years being told it was just because of my weight, while my legs got huge. They are better since starting treatment, but not better since losing 70lbs from WLS. I have a picture of my legs on my profile...warning...it's not pretty!
   — Sarahlicious

October 4, 2003
I want to thank everyone who responded. I am calling my pcp first thing on Monday and insist on seeing a theraphist,if he wont refer me I will seek out a doctor who will. I feel so much better now after hearing from each one of you and much more informed on this condition, thank you for your input and caring. Hugs to all!
   — Juanita N.