Pain returned

[Trn20]

A year ago I was diagnosed with lymphoedema in my legs after many years with swelling feet. The diagnosis came because of extreme pain and difficulty walking. I have since been wearing made to measure stockings and toe sleeves each day. I also was having lymph drain massage once a week. Pain went away, a normal standard of living returned and I was enjoying walking the dog again. Then my dermatologist who does the massage felt I should be able to go less often. We cut back to once a fortnight then once a month. However after a month without treatment the excruciating pain returned. I cannot seem to convince her that this is the reason. There were no other triggers. She keeps insisting this must be something else as at the time she couldn't 'feel' any lymph blockage and my feet were not swollen as before. So now 3 months on my feet are swelling again daily and the pain prevents my walking normally. Anyone else had this dilemma or knows what (else) could cause the pain to return? My doctor advised not wearing the stockings for a while which worked for a week. Now I vary between days with stockings and days without. The photo is of my 'morning' feet.

[patsy1702]

Is your dermatologist a qualified mild therapist? Have you had a fall or banged your feet in any way even mildly? Have you changed foot wear?

[Trn20 in reply to patsy1702]

Hi Patsy

I'm not sure if we have mild therapists here. I live in the Netherlands but I could look into this. I haven't had a fall recently or banged my feet but it is interesting that you mention foot wear. I went from wearing my winter boots, which also added some compression, and closed lace up shoes to sandles and more open shoes when we were having 25-30 degree weather.

[patsy1702 in reply to Trn20]

Try contacting the LSN they will probably be able to give you therapists names or go to their website a look them up but they are very helpful on the phone. Maybe you have specialists nurses or physios.Good Luck

[Lynora in reply to Trn20]

There are many MLD therapists in the Netherlands (Belgium/France/Denmark etcetcetc)

Try contacting the office at [e-mail] for a list of lymphoedema therapists.

You appear to have been given some very contradictory advice!

[AnneBury]

The comment "couldn't feel the blockage" doesn't make sense - not sure how much any blockage can be felt. I suppose there could be an area with a build up (mine is due to lack of lymph vessels so that comment would not relate to me). Have you been treated through a Lymphoedema clinic? Who gave you the lymphoedema diagnosis? Extreme pain with lymphoedema is often because the lymphoedema is pushing/ irritating other conditions. Sorry lots of questions not answers!

[Trn20 in reply to AnneBury]

Hi AnneBury thank you for your response. I was diagnosed at hospital by a Dermatologist specialist. After some rudimentary checks she said lymphoedeem. I had to prove to say great but now what? I was given a print out of explanation for primary and secondary lymphoedema. I have primary as this is not caused by cancer or trauma to the legs.

I had to search out my own treatments from there. My local dermatologists who visit the health clinic twice a week are trained in giving lymph drain massage but are not lymph specialists. This same dermatologist measured my up for and ordered my support stockings and compression socks

To go to a lymph clinic I need a referral from the hospital specialist and check with my health insurance if it is covered ( I live in the Netherlands so we pay for health insurance). As yet I haven't gone down that route as the other treatments were working.

[AnneBury in reply to Trn20]

I am in UK so no knowledge of your health care system. Sounds to me as if you need a referral to a lymphoedema clinic. Firstly to confirm you do have lymphoedema and secondly to get the best advice/ information for treatment - assuming it is lymphoedema. Good luck.

[PenelopeW]

I was referred to a Lymphoedema Clinic, treated with compression bandaging and now always wear open toe compression stockings from 1/2 hour after I get up (allowing for showering) until I go to bed at night. I raise and rest my legs frequently during the day, alternating with light exercise. I find I can't wear shoes/boots that make my feet hot so wear sturdy sandals or shoes with 1/2 inch flat heel. I cant wear any shoe with a strap across the foot because of swelling with the irritation. It is a nuisance but worth it to be able to control the pain. Heat seems to be the worst thing. Moisturising the legs is so important and beware of insect bites (I always wear loose fitting trousers now). I have had breast cancer with removal of lymph nodes from one arm after a mastectomy but luckily, so far, my arm has not as yet been affected. Best of luck.

[PenelopeW]

I was advised by the leg clinic to wear my compression socks every day without fail and to put them on within half an hour of getting out of bed (allowing a quick shower). After half an hour I am usually glad to get them on and then sit down with my legs raised to have my breakfast. I have to try to keep my feet cool