HI all! My name is Erika, however it should be, "Frustrated in the US!" I had a recent , pretty severe bout with lymphoedema at the end of January 2019 and ended about 3 weeks later in February 2019. The problem I have been having since then is that when I am sitting for any length of time, I cannot stand without severe pain in both knees. The same holds true when I wake up in the morning, I have to hold onto the walls so I don't fall down due to my knee pain. This only started after the swelling was pretty much gone. To this day, March 13, 2019, these same symptoms are still happening. I'm unsure of what to do...I saw a Vascular Surgeon and all I was told is that I have a combination of Venous Insufficiency and Lymphoedema and that the only thing that can be done is compression treatment. (Lasix would work but the swelling would automatically return once the medicine was stopped.) Has anyone experienced this? If so, what did you do? I'm beginning to think I have bilateral knee problems that coincidentally occurred with the venous insufficiency and lymphoedema. Any information would be greatly appreciated!!!! My apologies for the long post, I'm just frustrated and need advice or help!!!
Bilateral knee problems after a recent bout with Lymph... - LSN
I’m afraid LE isn’t something that comes and goes, or can be cured. Perfaps the Vascular surgeon didn’t explain to you that it’s a disease that is progressive with Stages 0-3 (International Lymphological Society/ISL staging). Without treatment eg compression therapy, decongestive therapy and lymph drainage it will progress causing cellular charges in the skin and tissue which cause the limb to become hardened and wood-like due to fibrosis. It’s not uncommon to have CVI alongside LE which your surgeon told you you have. LE is not simple water retention that goes away permanently or can be treated by Lasix, your doctor was right not to prescribe that.
Have you been referred to a Certified Lymphedema Therapist/CLT? You will receive the most accurate advise including manual lymph drainage/MLD, lymph moving exercises, meticulous skin care to avoid infection, and compression therapy for your individual situation. CLTs know much more about LE treatment than doctors who receive little training on the lymphatic system and lymphatic diseases.
Your knee pain could be related to problems with your popliteal lymph nodes not working properly, especially if the pain is in the back and/or sides of your knees. (there are also other possible reasons for knee pain, pain can’t be diagnosed on a webforum). I have terrible knee throbbing due to no functioning popliteal nodes causing huge lymph congestion around my knees. (Lymphoscintigraphy and ICG Lymphography scans have shed light on all the failures within my Lymphatics and explained the LE problem spots/painful areas of my lymphie limbs when I had the scans a few years ago.)
As you’re in the US and this is a UK site you may want to link up with the National Lymphedema Network and their NLN web-forum on Inspire.com for more US based info. Also, the Lymphatic Education & Research Network/ LE&RN has a supurb site which includes CLT therapy guidance and a search page for CLTs by post code or locality. As you are new to LE you might also find the 10 Things webpage helpful, and if you’re on Facebook there are LE groups - my favourite is Lymphie Strong Inspiration group which is a closed group but easy to request access, it has a few thousand members.
It’s a lot to get ones head around being diagnosed with LE, and a huge learning curve, so give yourself time to accept and process. It’s super important to find a CLT. Your surgeon or primary doc should refer you, ask to be referred. Many US insurance companies cover CLT treatment and prescribed compression (some cover more than others).
When you can, elevate your legs to ease the pain and give your Lymphatics a rest. Gravity works against leg Lymphatics and if they are broken it can result in much more swelling and often pain. Lymph fluid has to make its way up your legs and back towards your heart but doesn’t have a pump like the Vascular system, it relies on ‘muscle pump’ which is why lymph moving exercises and activity is important eg waking, swimming etc. Not sure how much was explained to you about our lymphatic system by your Vascular doc. Elevating the legs with your feet slightly above heart level is helpful. Not always practical to lie down so any elevation of legs throughout the day helps especially if you’re in leg pain
Take care and hope you’re able to see a CLT soon! 😊
I can't thank you enough for the information you have provided! I wish that the Vascular doctor was as detailed as you were. I do have an appointment this afternoon with my Primary Care Doctor and will ask about a CLT referral. I will also check into those US based sites as well.
You might enjoy these:
Probably the most well known Lymphie blog out there
The Lymphie Life
There are quite a few LE blogs, you can find a list on the LE&RN website
Seek advise/diagnostics from an orthopaedic consultant - there may be a problem in the joint, which a vascular consultant would not see.
Spontaneous/unexplained bi-lateral lymphoedema which resolves after three weeks is a mystery - as CCT67 says, lymphoedema is progressive and sadly incurable - but can be ‘managed’ by the therapies described.
Hi all! I am finally going to a Lymphedema Clinic today 4/9/19! It took quite a while to get in there, but I'm hoping for some type of relief. By the way, I was also told that I have bilateral medial cartilage problems and I have to go for an MRI to see if I need surgery to fix this problem. When will it stop??? I can't tell you how frustrated I am, having to deal/cope with all of these problems in my legs...I know there are people who have it much worse but for right now I just want to give up and never leave the house. It's quite embarrassing to walk around limping, with a cane, in the town I grew up in without getting looks, as if I want this to be my life. Anyway, thanks for listening again.
All my best,
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