Does anyone with lymphedema suffer from severe ankle a... - LSN

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Does anyone with lymphedema suffer from severe ankle and foot pain?

Lakcl profile image
34 Replies

I am 45 and developed primary lymphedema in my left ankle and leg one year ago. I wear an off the shelf compression thigh high every day which helps control the swelling but my ankle and foot are in excruciating pain for most of the day- worsens as the day goes on. Does anyone else experience this?

34 Replies
Perido profile image
Perido

I've had a problem where my calf was getting very achey (bordering on pain) and significantly more swollen as the day went on. At the time I was wearing an off the shelf thigh high stocking. Since then I have a custom fit flat knit stocking for which I was measured by a lymphoedema nurse. My current flat knit stocking fits fairly well and is about the right compression level (2) for me and I don't get aching or swelling anything like I used to.

Lakcl profile image
Lakcl in reply to Perido

Thank you for replying to my post. I’m glad to hear that a custom compression garment improved things for you! I’ll look into that.

Lynora profile image
Lynora

Sounds like you may need custom made, as described by Perido. Do you live in the US?

Lakcl profile image
Lakcl in reply to Lynora

Thank you and I agree. It sounds like custom made would be better. I do live in the US.

Perido profile image
Perido in reply to Lakcl

Just to add, it took a bit of trial and error with custom fit to get it more or less right. After giving feedback to my lymphoedema nurse I'm now on my third custom fit which fits better than my first two stockings.

Lakcl profile image
Lakcl in reply to Perido

Great to know. Thank you!

Trn20 profile image
Trn20

Firstly i would definitely recommend you get a referral to a specialist for made-to-measure compression stockings. It may be you need a different strength of support, a different length, or even an open-toed one and/or toe-support socks.

However, I have these and found that during my work which involved standing and walking a lot, I developed tendinitis in my Achilles’ tendon on both sides (I were supports on both legs). I was wearing my supports all day everyday day except at night. In consultation with my physiotherapist we decided to see what happens when I wear or don’t wear the support doing different tasks. The conclusion was that on days of inactivity or long sessions of sitting (tv watching, visiting friends, church) that I could wear the stockings with no problem. However, when largely mobile or standing for a long period (gardening, shopping, babysitting, household chores, walking the dog, etc) I couldn’t wear them. So now I balance wearing them depending on my activities. It helps a lot. And keeping up with my stretching exercises before I do any physical work. I have also learnt not to stand talking to people I run into as this creates intolerable pain later!

Hope this helps. But definitely seek out professional advice too.

Lakcl profile image
Lakcl in reply to Trn20

Thank you so much for your reply. That information is very helpful. I can see where the pressure from the compression sticking pushes in the Achilles’ tendon. I do have pain in that area as well. I have a lot of pain in the front of my ankle too and towards the inside. I live in the US and have an appt with a lymphedema doctor out of state in a few months (delayed due to pandemic) but I am trying to figure out ways to help the pain in the meantime. I totally agree with what you said about standing. That’s the worst!

Trn20 profile image
Trn20 in reply to Lakcl

The way to ease tendinitis in the Achilles is simply to massage it in upward strokes. This is excruciatingly painful to begin with but bite through it as it really helps and try to stretch by standing in a lunge position with hands against a wall and your sore leg behind you a couple of times a day.

Anne16 profile image
Anne16

Hi there,

Yes I have ankle and foot pain every day, some days worse than others. However, my primary lymphoedema is from birth and in both legs and feet. I am now soon to be 80. The mobility/flexibility in both feet and ankles is very limited, so I guess this does not help either. Heat makes it worse, as does being inactive. Some days too painful to wear clinic prescribed hosiery, so I just take each day as it comes. Take care of yourself.

Lakcl profile image
Lakcl in reply to Anne16

Thank you for replying. I tried to research foot and ankle pain being a symptom of lymphoedema and didn’t find anything so I thought I was the only one.

Anne16 profile image
Anne16 in reply to Lakcl

No you are far from being the in only one! Main thing is to moisturise your legs as much as possible, but especially after showering or bathing. I use Doublebase Gel to which I add some essential oils, Lavender, Rose, Rose Geranium, Frankincense. Just a few drops of two or three . Frankincense is especially good for healing, as is Lavender. Sometimes if I pain is really bad, especially in hot weather, I soak a muslin cloth in ice cold water to which I have added some Lavender oil and use this to cool and soothe legs. Hope some of this is useful to you. Take care.

Lakcl profile image
Lakcl in reply to Anne16

Those are such great tips and I will try them. I also read that creams containing Retinol have been shown to be effective and have been trying that for the last few days- haven’t noticed a change yet but will try a little longer. Thank you and you take care as well!

Trn20 profile image
Trn20 in reply to Anne16

Great tip. I’m going to try that as the recent extra hot spring in Europe has triggered of swellings more than usual

211044 profile image
211044

I wear made to measure compression knee highs on both legs and do get a lot of foot and ankle pain and also have very itchy rings round my legs just below the knees.

Lakcl profile image
Lakcl in reply to 211044

Thank you for replying. I was wondering if I was the only one. I’m sorry you have to deal with it too. I did find that thigh highs were more comfortable than knee highs for me.

BADFoote profile image
BADFoote

I feel you pain! I have Lymphedema in North legs and feet. I have a pump and after months learned pumping at night then short stretch wrapping my feet, ankles and legs helped me sleep though the night without pain. Some days pain in my feet was so bad I would cry all.night. A wonderful lady on this board told me to try oils. I now use oils at night when I take compression off. Massage greet and ankles with oil and work it in. Increases blood flow and moves fluid out. Doing this every day has help the extreme swelling and pain in my feet that compression never helped.

JanCan15 profile image
JanCan15 in reply to BADFoote

What kind of oils? I’d be interested to try that.

BADFoote profile image
BADFoote in reply to JanCan15

There are a lot of premium oils, but I just bought some from a local store to try. It's the message that gets the blood and the lymph moving. Being wrapped up, when you take it off, is when the pain can sometimes be the worse. So a good massage can really get things moving. Mostly the bottom of the feet, heels, then up the tops of the feet. First I tried a carrier oil with hemp oil. Then I tried carrier oil with lavender oil. Then I put a few drops of lavender oil on top of Vaseline Petroleum Jelly and rubbed that in. That was the ticket for me. Lavender is very calming and will help you go right to sleep when your done if you do it before bed. I probably massage 3-5 minutes per foot. I tried other oils; hemp was recommended; lavender worked best for me. If you have oils, try them. I found the Vaseline best on my feet, which are always dry now from wrapping them. Good luck my friend. Nothing works for everyone because we all have different bodies. Hope it eases your pain.

Lakcl profile image
Lakcl in reply to BADFoote

I’m sorry you’re having to deal with this too! Thanks for your advice. I will look into the pump and the oils!

JanCan15 profile image
JanCan15

i had bad ankle pain for a year or so after I developed Lymphedema from surgery and chemo. I think it’s because I started back into exercise very quickly and intensely. I could run or go on my tippy toes for over a year. It just took time to heal. That may not be the same ankle pain you have.

Lakcl profile image
Lakcl in reply to JanCan15

Thank you for sharing that. It’s funny because it also feels better for me when I walk on my tippy toes. I’m glad yours got better!

BedfordBoy profile image
BedfordBoy

Hi Lakcl,

It may be worth getting your GP to take a look at it as I had a similar thing and it was diagnosed as plantar fasciitis (excuse the spelling!).

I'd always had flat feet (fallen arches) but it never held me back or became unbearable even doing sports back in the day. But as the lymphedema got worse and my leg wouldn't bend at the joints properly, I got agonising pain as you described. Special footwear inserts and treatment from a physio helped me along with anti inflammatory drugs. Hope you get it sorted out.

Lakcl profile image
Lakcl in reply to BedfordBoy

That is really interesting that you say that because at one point an orthopedic doctor told me that it could be plantar fasciitis. An MRI showed inflammation at my navicular bone but no damages tendons or anything. I tried orthotics, inserts, and ibuprofen but I’m thinking I may need to try again -maybe different inserts. Like you, I’ve always been active and never had issues with foot pain until the lymphedema. Mine began literally overnight. I woke up with foot pain and a swollen leg. Thank you for sharing and I’m glad your foot pain went away.

Leg86 profile image
Leg86

How did your primary start, was it triggered by an injury or just developed late in life or illness. If it was after an injury it could be the soft tissues not repairing and recovering properly due to the underlying lymphoedema. Restricting recovery.

Mine started at 12 I think started after injury to an ankle it is always bruised. 2 years after lots of tests I had Lymphography at St Thomas' hospital London under prof Browse who at the time was the top man in the UK. He discovered poor development of lymphis system in one leg but needed a trigger to show up. This can be injuries illness etc. I don't get bad pains but discomfort on a bad swelling day. I have lived with it 35 years now. I would talk to your lymph therapy nurse doctor when you have your check up could be stocking size, pressure from swelling etc.

Lakcl profile image
Lakcl in reply to Leg86

Thank you for your reply. I think mine was triggered by some sort of injury but not a known injury. It may have been from overuse since I was working out several times a week in addition to working full time and constantly being on the go and on my feet. I woke up with foot pain that felt like an injury along with a swollen leg. I live in the US and haven’t had a lot of help from the doctors here. I have an appt out of the state in a few months, but maybe I should try harder to find someone local to help me with custom compression.

BedfordBoy profile image
BedfordBoy

Hi again Lakcl,

If you know of a good chiropractor /osteopath, they may be able to help you too.

I had a really sore back which drugs wouldn't help at all so I went to a chiropractor who before I even took my shirt off asked me to walk around his office while he watched. I thought it was weird until he put his fingers on my back and pushed. It was like an electric shock! But the back pain went! He explained that my shoes were no good for me and they were making me walk funny, which was putting extra strain on the back and I'd developed a slight limp too. And he knew all this just from watching me walk! I have found that for me, Clarks shoes are the best at keeping everything in line and I don't need any inserts now. Its all trial and error for us, so if nothing else works for you then maybe this info will help. Stay safe!

Lakcl profile image
Lakcl in reply to BedfordBoy

Thank you so much for the great advice! I did see a chiropractor at the beginning of all this but the focus then was more on my swelling than pain and trying to figure out what the problem was. I ordered some Clarks so we’ll see how that goes. I’ve been wearing ASICS gel nimbus 21s a lot but still have the pain. I’m willing to try anything. I appreciate you sharing what has helped you!

BedfordBoy profile image
BedfordBoy

My pleasure. That's a good feature of this site, other people who have been in your position might just have the remedy that doctors are oblivious to.

All the best!

Sheilamoose profile image
Sheilamoose

Maybe your compression garments are actually the wrong size? I had 'off the shelf' garments (measured by my chemist) to start with, then begged my GP to refer me to clinic I was seeing for my arm. Quote: "Mrs XYZ arrived in the most ill-fitting garments I have ever seen." I was prescribed Juzo knee-high (which come in numerous sizes, colours & compression classes) - have had no swollen ankles since!

Lakcl profile image
Lakcl

Thank you, Sheilamoose! I’ll be looking into custom compression and I’m glad to hear you experienced relief from your ankle swelling. :)

Kristenlk profile image
Kristenlk

I developed lymphedema in my Left leg and struggled with ankle stiffness and pain, including posterior tendonitis. What has worked really well for me to control it is my chiropractor loosens the joints and does ART on the tendon and other tissues, and my massage therapist does trigger point therapy on the sole of my foot (all approved by my lymphedema physical therapist). I’m pain free now. I am also in the US.

Lakcl profile image
Lakcl

Thank you so much for replying. I will definitely look into ART and trigger point therapy. I’m glad you are now pain free!

Kristenlk profile image
Kristenlk in reply to Lakcl

Thank you! I hope you find relief very soon.

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