My lymphoedema journey so far

Although I was diagnosed as having oedema on my left ankle in 2004 (having done a lot of walking/standing around on a hot day) this seemed to have disappeared within a couple of weeks. In December 2009 I suffered a bout of Iritis in my left eye. One of the Opthalmists questions was---do you have an auto-immune disease because this event is more commonly seen alongside the same? The Iritis cleared up and my Total Knee Replacement (L) went ahead in Feb 2010. The new knee bedded in very quickly but my left lower leg did not return to normal proportions.After many repeat vists to GP & Orthopedic (MRI;X-ray & Doppler) I was referred to Vascular Dept. where it was finally recognised that I might have Lymphoedema!! I then had to have formally reported visits to Doppler ultrasound and Xray before being referred to Lymphoedema Clinic at end Nov 2010. I was measured for compression stockings and discharged to the care of GPs practice nurse on the premise that 6-monthly Doppler & 2 compression garments every 6 months was the minimum care regime.GP allows me to carry standby prescription (250mg erythromicin--penicillin allergic & react badly to 500mg) for the occasional Cellulitis flare. There is some suggestion that I already had un-diagnosed Lymphoedema prior to my knee operation?

In April this year I started having bad headaches,sporadic sight blurring and sore left temple.I was sent to Hospital where suspected Temporal Arteritis (GCA) was diagnosed---CT scan; temporal artery biopsy and visits to Opthalmalgy & Rheumatology were arranged as well as immediate start on 50mg Prednisolone(steroids) and the introduction of Novomix to control blood sugar spikes.

I have noticed that my leg does not take too kindly to the high-level steroids either with frequent swelling of my foot even in compression.When the foot swells the levels of my blood sugar climbs as well, which is exacerbated by muscle weakness brought on by the steroids.How we take mobility for granted!

I am now down to 30mg Prednisolone but now also have a cellulitis flare to contend with. It doesn't come by halves! Thanking you for allowing me to sound off to someone. It has made me feel a little better!!!

An intriguing qestion to finish on--- both the Iritis and Arteritis have affected my left side (same as the lymph leg); as Lymphoedema is an auto-immune disease is there a connection?

4 Replies

  • I get occasional bouts of Uveitus (eye goes bright red and the pain from light is excruciating). It is treated with steroids first drops and now stronger tablets. I have had 3 bouts, 2 in right eye and one in left. I got lymphoma in my right arm following a mastectomy for breast cancer in 2003. I have had 3 bouts of cellulitis. My mother went blind overnight with Great Cell Arteritis.

    I had a second attack of breast cancer (not related to the first, different type and another primary. The drugs I am now on cause me constant and acute joint pain. Do you think all this is related? I have never seen a doctor about the lymphodema. They just do not seem to exist. Treatment, if you can call it that, is rationed where I live.

    When I ask questions, nobody seems to have any answers and seem offended that I ask. I feel despair at times. There are 2 new operations for lymphodema but no one tells you about them. The first I would not have, but the second sounds promising. I cannot where the horrible sleeve because I seem to have become allergic to the elastic and it itches terribly. the sleeve makes my hand swell and with the wrist and lymph pain I end up not being able to use my hand. I am right handed and an artist.

    To answer your question, I suspect it is all related but I cannot prove it or get any doctor to listen. Sorry I cannot be more helpful and thank you for listening to my moans. I do not think anything will get better until we all get together and protest and insist we get treatment.

  • Here in Miami they treat Lymp disease with water pills and limited visits to a massage therapist I also go to a acupuncturist but no cure in site. I wear socks as anything too tight hurts my legs and I usually keep them elevated as walking or standing too long irritates them. I take an Alleve in the morning for joint pain and it helps a little. I walk with a Walker as I have developed joint pains also. Most Dr's have no clue I do take vitamins for my immune system which is also affected...I pray the day will come when Stem cell treatment will be available for this in the meantime I search for a cure.

  • thanks for the info..I have found a water called black water which has a PH of 6 which is alkaline and has helped to keep my immune system in check I use water pills sparingly maybe 1 a week and taking medicine for diabetic 2 promotes joint pain but do try to eat calcium rich foods...just frustrated in general as my Breast Cancer and Lymoh excision (16) has promoted all this but try to watch funny movies and shows which help and just try to move as mush as I can..

  • hi violet snowdrop

    you've been busy! sorry things have been so complicated foor you

    all this is great advice, & you will find that you develop routines that are right for you

    dunno about the left side thing - if you get lymphoedema after nodes get removed during cancer surgery you're obviously more at risk for lymphoedema on that side, but otherwise i'm not sure

    any primary lymphies about who've had the 1-sided thing?

    denise, might be good to get yourself back to the lymphoedema team - there are loads of different brands & types of sleeves, with different tops, & i think i tried a dozen before finding the right ones for me & i'll be going into made to measure during the summer after nearly 3 years of sleeves being not quite right

    & good times, you're right that there's not a cure - it's about finding ways to manage it that don't interfere with everyday life too much

    & violetsnowdrop, if i'm having a bad day i try to remind myself that lymphoedema's a pain in the a*se but better that than the tumour!

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