Shirley's story
I am 78 years old and have suffered from Primary Lymphoedema most of my life which is caused by an insufficient lymph system. In contrast, Secondary Lymphoedema is the result of operations or accidents and only affects the area of the blockage or damage.
My first sign was as a teenager at High School. We picked raspberries throughout the summer school holidays in Upper Moutere where the temperatures soared into the high 40s. When it was really hot my feet and ankles swelled up greatly, but the only respite was to put them in cold water when I got home and raise my legs after I had finished my other chores. The cause at that time was not known or even considered and you just got up and went back to work the next day hoping it wasn’t permanent.
The next sign came when I was expecting my second child. I became huge all over and being an avid sportsperson I was concerned because I became tired and had aching legs and sore feet. At that point we found my blood was negative and my husband was positive and the baby was also positive. I ended up with RH antibodies and I consequently accepted that as the cause of my weight gain. I had never had weight problems before and found it frustrating. I still played sport, walked a lot, played squash and coached athletics.
Several years later I again became pregnant and ballooned out of all proportion. I no longer had knee or ankle joints that worked and found coping with day to day jobs very exhausting and difficult. I was also still working fulltime but fortunately worked from home. The Doctor was not helpful in the least. When I told him early on that I had RH antibodies in my blood he told me I had been reading too many books and there was nothing wrong. At 8 1/2 months I phoned the Doctor to tell him my hands and face had gone purple and his reply was that I wasn’t getting enough exercise!
Two weeks later I gave birth to a stillborn little boy. We had successfully poisoned one another. Another Doctor who delivered him took one look at me and said, “Good Lord, she is RH” and told the midwife he could tell because my face and hands were purple and that was a major sign. I am relating this as I believe these pregnancy events put strain on my lymph tissue and I may never have developed into full blown Lymphoedema in other circumstances. 18 months later I had another little boy and he has been a joy to us ever since.
When I was nearly 40 I noticed that suddenly my legs began swelling badly and became like lumps of lead. They ached and became very sore to the touch and putting my feet on the floor was a very painful experience. I visited our GP and he immediately sent me to a Vascular Specialist who sent me on to a Physician. After consulting with another Specialist and doing some tests the three of them confirmed that I had Primary Lymphoedema. I was told to wear support hose but other than that they could do little for me. The pain was caused by inflammation of the lymph tissue and I was given a prescription which did work and I could then put my feet on the ground without cringing. The swelling got slowly worse.
About a year later we had moved to Auckland and I went to see another specialist to see if anything more could be done as I was slowed down considerably and found that hard after a very active life. His parting words to me were “to change my lifestyle as I would be in a wheelchair within five years so just get used to the idea.” I went out the door uttering rude things and set on a course of alternative treatments, none of which were much help. Cellulitis became a familiar problem but with care and quick response with antibiotics that can be kept to a minimum.
After moving later to Otaki I had a stiff neck and headaches so went to see a Chiropractor in Levin. On my second visit he said he was interested in my Primary Lymphoedema and had been reading up about it and would I like to be a guinea pig. He wanted me to go to him five days a week but as I was working two jobs I could only go twice a week. His receptionist helped him as he stretched me out by the head and the receptionist held my feet. It was a really good feeling. Then he deeply massaged what he termed “the holding tanks”, two in the small of my back near the kidney area and two just in from the shoulder joint in a little hollow on my upper chest. After the 3rd treatment and losing a lot of fluid, I was showering when I discovered my ankle bones for the first time in 20 years! I was really excited!
I continued on with the treatment for a couple of months when unfortunately the Chiropractor had a serious car accident and could no longer practice. I continued massaging the areas as well as using a body brush in the shower working towards the holding tanks. I continued walking, tramping, cycling and golfing until my heart complained and I had to cut back but still walk and play golf albeit only nine holes. At one stage, for a few years, I took Lymphoedem tablets that could be obtained from a certain chemist till Customs wouldn’t allow them in anymore. They helped keep the fluid down and I had much less pain. I had no help with buying stockings and sleeves, which are very expensive, until I found that our Health Board funds therapeutic garments for those who have had operations (mainly breast cancer) in their hospital. I had had breast cancer and now get two pairs of stockings, gloves and sleeves per year for free. I still buy two pairs of stockings a year but now I am retired can get them paid by Disability Allowance. This has been a huge financial help.
A few years ago my feet began leaking from the pores in my skin on my toes and this caused me to get really upset. I went to the Lymphoedema Clinic in Adelaide and the Lymph Specialist re-measured me and said I must wear full foot stockings and also fingers in my gloves. He gave me the prescription to bring back home and was interested to know how I had kept the swelling to a minimum. The leaking stopped with only one relapse. It is the only time I have felt angry about the disorder.
At least now I am getting close to 80 and can walk, golf and garden and do most things I want to and that wheelchair is a long way away. Another thing I have found interesting is the genetic aspect. My two sisters and I all have an autoimmune disorder pointing to a mutation or incompatibility between our parents. We have half sisters from both sides and they are not affected at all. The three of us all have different problems, I have Primary Lymphoedema, my oldest sister has Sjogerens Syndrome (diagnosed at 21 years old) and my other sister had Leukaemia and died in her 50s. Also, all our daughters (not sons) have autoimmune problems, so far the next generation seems fine and hopefully stays that way.
Overall much can be done with a sensible diet, massage, wearing support garments and plenty of exercise. My main theme is to be proactive. Use it or lose it and “can’t” should not be in our vocabulary.