Worried about starting therapy

Hi all! I'm new to this board. I have primary lymphedema in my right leg that began in puberty. Here in the US, I've found that doctors are mostly clueless about the condition. I've been told it's only an extra layer of fat to it's just something I have to learn to live with.

Well today, FINALLY, after 22 years, my insurance has approved therapy because it is affecting my mobility greatly. I'm just scared of therapy. I've no idea what to expect. Is it painful? What is it like wearing compression bandages all the time? Tips to stay comfortable? I feel like a newborn. I'm excited to finally be treated, but scared to enter the unknown.

7 Replies
oldestnewest

Did you know there is a US support group - lymphedemapeople.com - many thousands of people your side of the Pond, with help and advice

1 like
Reply

Hi LM92

It's great you are finally going to get treatment! You're not the only one who was failed by the medics for so many years. If you are on Facebook there are some excellent FB support groups you may really helpful - time and time again there are stories like yours of being misinformed and failed by doctors. People share lots of tips for managing their LE. Another excellent informative site is Lymphatic Education & Research Network/LE&RN which has links to many LE blogs. Lots of Lymphies are anxious about treatment before their first session but come away feeling much more relieved. I have Primary LE in my feet, legs, trunc and arm which is a lot of compression but without it I'd be in much more pain and more swollen. I have weekly Manual Lymphatic Drainage/MLD with a qualified therapist and I feel SO much better afterward. I'm not sure what you're treatment will involve, you should find out at your therapy session. If it's MLD you will have then it's nothing to be worried about - it's a light touch technique of moving the lymph through the skin (it's not like traditional massage). You will probably enjoy it and feel as sense of relief in your leg afterwards. If you have a course of Complete Decongestive Therapy/CDT it will involve multi layer bandaging which can be uncomfortable but usually results in the limb volume being significantly reduced which is the aim of CDT. Ask the therapist to teach you Simple Lymphatic Drainage/SLD to do to your leg daily as this is important. You will be on an information learning curve now that you're getting proper treatment which may feel overwhelming at times, you are not alone there are thousands of us 😊🦋

lymphaticnetwork.org/living...

2 likes
Reply

Thank you so much for your informative reply! I will be looking into all the resources you listed. I appreciate it more than you know. -Crystal

Reply

Hi lm92 After telly Dr. For 15 months my legs and hips were getting bigger he said must be weight gain

I did not gain . Other parts of body were getting smaller. Finally he looked and said lympedema.2 times a week got 2 hrs. Of therapy at hospital. Was very relaxing. Doesn't hurt. Bandaging doesn't hurt just don't like it. The pump machine with leg boots is relaxing.Takes an hr.. 2 times a day. Then exercising each day is another hr.Good luck. Don't be afraid.let me know

2 likes
Reply

Thank you so much for your reassurance!

Reply

Compression hose and Farrow wraps are not painful nor uncomfortable. Not easy to get on, somewhat easier to get off though. Don't feel scared... these will help you immensely. Manual lymph drainage by a therapist is wonderful, and you won't believe how gentle they are. They can teach you to do it yourself, so several times a day I do it myself. I recently got compression boots (pumps) and they are wonderful (thank you Medicare). Ask about those. I take a cane along with the little feet on it to feel more secure and to be more secure.

1 like
Reply

Thank you so much for the encouragement and positivity! I'm really started to look forward to it.

Reply

You may also like...