Finding treatment: I have been diagnosed with lymphedema... - LSN

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Finding treatment

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I have been diagnosed with lymphedema in my legs and feet... and that’s where it stopped. I have not been receiving any treatment or help for it. It is not cancer related. I do not know what to do. My general doc said to go get compression socks but that’s it. I’ve tried compression socks but by the time I shower, I am already so swollen, I can not get the hose on. I need another shower from sweating so much to get the hose on! The hose bind at my ankles and knee which causes additional swelling and pain.

The last three days, I have been having tremendous pain from my toes to my knees and am having trouble walking as a result of it. I want help, but how and where do I get it?

Please... any words of wisdom or guidance would be greatly appreciated.

10 Replies

Where are you in the world?

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Hidden in reply to Lynora

I am in Columbus, Ohio.

About 5 years ago, I broke both bones under my knee and had emergency surgery. I have two plates and 12 screws in my leg. Since the surgery, my leg has been swollen. Somehow, both of my legs have been effected by this. 3 years ago a doctor officially diagnosed me with lymphedema but did not offer any follow up care or direct me where/how to get treatment.

I am a teacher. By the end of the day, my legs, ankles and feet are huge! I can not fit my feet in any shoes other than slides that I can adjust the top strap and last winter I was able to find slippers with rubber soles to get me

through those cold months.

I am at wits end trying to find help. I apologize for rambling... I am just at wits end. I can not believe there are not easily accessible facilities to help treat lymphedema. I have felt so lonely throughout this lymphedema journey.

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Lynora in reply to Hidden

I recommend you touch base with support groups on your side of the pond:

lymphnet.org

lymphedemapeople.com

clt-lana.org

Any of these organisations will be able to advise and guide you to help, hopefully in your area.

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Hidden in reply to Lynora

Thank you so much!

Please also join this support group in the US - inspire.com/groups/national...

Unfortunately it all starts with your GP. You have to make a nuisance of yourself and insist he refers you to a Lymphedema clinic at a hospital . They know what they are doing there. They will measure you properly and order you the right hosiery to suit your level of swelling. If getting the garments on is difficult, there are other options, like bandaging or wraps. I have the same as you. From my toes to my hip. Putting the hosiery on is a real battle every day. It’s caused tennis elbow in both and also damage to my wrists. I’ve had Lymphedema over 20 years. GP’s don’t know much about it and you will need to pester them to refer you to a specialist who will help. Good luck x

As Lynora said, getting to a Lymphie therapist is essential for properly measured and fitted compression as well as advice on how to manage your daily self-treatment.

Look for a properly qualified therapist with the initials CLT-LANA which stands for Certified Lymphedema Therapist - Lymphology Association of America.

There are a few search engines for CLTs.

Check out LE&RN/Lymphatic Education &Research Network for a therapist search as well as links to Lymphie blogs - there are a lot of lower limb Lymphies out there who have Primary LE (either born with it or delayed/late onset) or Secondary LE due to trauma/injuries etc

On Facebook there are good support groups, the best in my opinion is called Lymphie Strong Inspiration Group which is led by Vern who has Primary life long bilateral LE. The open groups are not confidential/private , so I always recommend joining a private group. Lymphie Strong is a closed group so just request to join. The only prerequisite is having LE. It now has 2500 members world wide but mostly American Lymphies. You will find loads of good support and sharing of information on coping with LE.

Also the National Lymphedema Network has a support group on Inspire, link below

inspire.com/groups/national...

You might also find the 10 Things LE informative. There is a lot to learn about living with LE take it day by day and allow yourself to adjust to what will become a new daily routine and lifestyle

10thingsle.info/

LE is a progressive disease so getting the right compression and self-treatment advice as soon as possible is important. US Insurance companies vary in what they cover. The Lymphedema Treatment Act/LTA would change that so all Lymphies are pushing for it to be passed. We nearly have enough congressional support so hopefully before long all insurance companies will have to cover basic treatment, garments etc.

Elevate your legs as much as possible at heart level to let gravity promote lymph drainage from your legs which should also provide some relief. avoid hot baths/showers, sauna etc as heat exacerbates swelling which in turn increases pain for many Lymphies. Cooler temperatures are our friend as we swell less. Try bathing at night beside bed instead of the morning, as getting compression on damp skin is near impossible! Put your compression on before you step out of bed. the socks you have are not fitting you right from your description, hopefully you can get to a therapist soon however in the meantime they may be better than nothing. Check out brightlife website for compression, they give helpful telephone advice

brightlifedirect.com/

Here are some good videos with SLD instruction to help you learn how to do self lymph drainage. Drainage for the limbs always start with central clearance so start with the video on Lymphatic breathing/trunk/abdominal drainage before moving down to your legs I’m sorry you are dealing with LE but there are lots of us out here, you are not alone! :-)

m.youtube.com/watch?v=ZLyT_...

youtu.be/UCtoV3ayLu0

youtu.be/ZLyT_0Tr40M

Gp was obviously right you do need compression but It’s essential that you get some compression hose that you have been properly measured for. You may be lucky and some ready made ones may come in your measurements but any irregular size is going to need to be custom made so you do need that referral to a specialist ASAP. There are some brilliant different solutions you can get, don’t have to just be a one cumbersome piece garment from toe to hip, you can get separates from toe to knee then shorts from knee to hip. Which might be easier to get on And a donning frame to help you get the knee highs on can be a brilliant help in the struggle to get em on. Just google compression stocking aid to see the type of thing available

You have gotten a lot of great advice already.

I would concur with pretty much everything in this thread.

The self LMD video's are the cheapest.

Linda Harness LMT is a manual lymphatic drainage therapist in your area.

There may be more.

All the therapy tends to be time consuming.

It is often out of pocket which can be costly.

I am an LMT with 42 yrs experience & my wife is a PT with 36 yrs

Our home is in Montgomery Alabama.

Post surgical lymphedema should respond well to ARPWave therapy.

Diet & related adjustments may also help speed improvements since it is post surgical lymphedema.

Eating modest portions of lean protein three times a day & opting for lower-calorie food options, such as fresh fruits and vegetables & maybe adding some extra magnesium all are worth considering.

Feel free to ask me for more information as I often consult for free.

Linda Harness LMT performs MLD

428 Beecher Road

Suite B

Gahanna, Ohio 43230

Phone:

614-855-5533

Check here to apply for an ARPWave FREE IN-HOME TRIAL

arpwave.com/index.php/about...

Tell your GP to referral you to the Lymphoedema clinic. They will measure your legs/feet and they will see which stocking would be suitable for you.

Honestly, I wish one day the Health service will give us more support with this chronic condition.

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