Best friend has lymphoma and lymphedema

[safetymom]

I thought I knew what to say after dealing with doctors so much with my late husband and my father.

My best friend has been struggling for the last couple of years with health issues. It started with lyme disease and she couldn't get anyone to try and treat it after the first round. Then about 6 months ago her arm swelled. One doctor told her to keep it still and now she finds out that was the worst thing she could do. Her arm causes her a great deal of pain and the doctors keep forgetting to write a prescription for her. As many of us know everything is a struggle when dealing with the medical community.

I do a lot of listening when she is telling me this. I know how important it is to be able to vent to people but I just feel I am not saying enough back to her to comfort her.

We talk several times a week but now is one of the very few times I still wish I lived in PA. I would be there helping her out.

 

[DebbieinWA]

My daughter has lymphedema. She is only 23 and it's been a long road to diagnose her. At any rate, she has a special sleeve that she wears to help keep the swelling down. It has really helped with her symptoms. She is also watching what she eats and seeing what sets off the swelling. For my dd, certain bread products seem to trigger pain and swelling of her arm. The doctors still have no idea why she has this - though their guess is that her lymph system never fully developed. It's just weird. Prayers being lifted for your friend.

 

[safetymom]

Thank you for the information. She got the sleeve but it really wasn't helping. I didn't know that about food. I will pass that along. I will keep your daughter in my prayers.

 

[Pea-n-Me]

You didn't say why she developed lymphedema - was it a result of surgery and/or radiation? Also, you mentioned lymphoma in your title, but not in your post. Were the Lyme disease and lymphoma related?

Many of us in the breast cancer community have to deal with lymphedema after treatment. Luckily, it's better than it was years ago when women had all their axillary lymph nodes removed and had to live with enormously swollen, painful arms. I have a mild case myself (8 nodes removed and radiation to the area) and have had to learn to live with it. Maybe I can help.

I find salt definitely affects me. If I eat a salty meal, chances are good I'm going to have a bit of swelling the next day. Even if it's not noticeable, there is aching in the arm if fluid is present. A steady diet of salty foods and snacks would encourage fluid build up for sure in someone who is prone to developing it.

I wear a sleeve only when I fly - something about the atmospheric pressure affects it. I had one period after a trip when I didn't wear a sleeve and ate salty food on the dining plan which bought me 6 weeks of physical therapy and compression bandages in order to "teach" the fluid how to find it's way out. Not fun at all, but maybe your friend could try a round of PT for the same reason. (BTW, PT wasn't offered to me, I had to ask for it and even with insurance, it was expensive as I had to pay a copay for each visit.)

I don't know if you meant a prescription for pain medication for the arm, but - without knowing detais - I think a better long term solution would be to figure out why she's getting swelling in the first place, then take steps to treat it, then prevent it. Once the swelling's gone, the pain's gone, too. Time is of the essence here, too, because the longer it stays the harder it is to get rid of it. She needs to act now.

There are a lot of things to consider when you have lymphedema. Here's an article which goes over many of them (it's long, and goes on for several pages). Good luck to your friend.

http://www.breastcancer.org/lymphedema_happens.html

 

[safetymom]

Thank you for the information. This has been going on for almost a year. She has been to several doctors and emergency rooms without a diagnosis. She on her own signed up for PT thinking that it would help. At that time the doctors had told her to keep her arm still. It was expensive and she paid out of pocket for it. The PT did help some but then her arm got even larger so she went to the emergency room and they admitted her and finally came up with this diagnosis.

She had Lyme disease which is probably what caused the lymphedema. She had a problem with lymph nodes about 30 years ago but has been fine ever since.

She has been a trooper through all of this. It's a shame no one diagnosed it sooner.

Thanks for all the information.

 

[Kristi1357]

I was diagnosed with Lymphodema in my left arm about 5 years ago. Mine is just a genetic thing, I guess. My lymphnodes are there, they just are really, really slow.

My case is very mild compared to most. I have a compression sleeve and glove. Besides flying, I may wear the sleeve twice a year when my arm swells. (I was told absolutely to NEVER fly without my garment on my arm)

I definately recommend PT and trying to reduce the size of the affected limb with the compression garments. As much of a PITA as it was going to PT daily for a month, learning to wrap my own arm, it should help her get back on track. I was also taught exercises to do, as well as massage to move the fluid through the body.

In my case, all the therapy didn't do much since my case is so very mild compared to most. After a month of daily therapy, we decided to quit since my arm size didn't decrease. I still get a new compression sleeve & glove yearly for flare ups though.

Maybe she can try to research a PT that specializes in lymphodema.
The one I have in NH only deals with lymphodema patients.
for her! I know how extremely painful this can be!

 

[safetymom]

She had a great PT before she went in the hospital. My friends arm is so large from the swelling that wrapping it, PT, and the special size sleeve really didn't do much for it. She is so miserable with it.

Hopefully the chemo will help and she will get some relief.

Thank you for sharing your story.