New, worried and seeking advice

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New, worried and seeking advice

Postby Sarah1234 » Thu Aug 09, 2012 4:25 pm

Hi there,
I'm a 21 year old girl (from England), and for about 2 1/2 years I have endured chronic swelling in my right foot. It happened after a number of incidents - I endured two very painful injuries to the foot that resulted in acute swelling at the time (one where a girl in a stiletto jumped on my foot and another where a boy accidentally jumped on my foot - bad luck, I know!). I also did ballet and was rehearsing quite regularly for a show - pointing especially obviously puts a lot of pressure on the foot. About a week or two after my show, I noticed my right foot had swollen quite considerably, and I had an aching pain when I pointed my foot (as I did in ballet), and it was also more hypermobile to the sides than my left foot.

Went to see loads of doctors, and a physio, who gave me lots of strengthening exercises, which helped somewhat, but the swelling never completely went down and varied. They thought it was hypermobility syndrome alone at first. A year later, I saw an orthopaedic surgeon who fitted me insoles, which also helped somewhat but not completely and were quite painful and restrictive to wear all the time, especially in hot weather. This April just gone, I went to see a vascular surgeon who thought my diagnosis might be lymphedema, but he was unsure of whether it was primary or secondary due to trauma. He prescribed me some compression stockings and has suggested that I see a lymphedema specialist, which I am yet to do.

I'm feeling really down about this whole thing. I feel I've over-researched lymphedema a bit (am a bit of a hypochondriac) and have terrified myself. I'm really concerned that the lymphedema is primary and that I will develop it elsewhere in my body as my life goes on, or that it will travel up my leg. I don't want to wear a compression stocking every day for the rest of my life - it's summer, and all my friends are in summer dresses, sandals or heels when we go out and I feel like I've lost my youth!

I try my hardest to keep it under control, so wearing the stockings most days(though I was prescribed class 3 (25-35mmHg) and I just feel they are so, so tight considering my case is relatively mild - anyone else have this problem?), keeping my foot elevated when sitting, drinking lots of water. I'm going to see a lymphedema specialist soon so I can learn to massage it but don't want this to take over my life. I used to do ballet and now I can't because of this condition.

Given my story, does anyone have an opinion on whether my case may be secondary or primary? It seems that secondary generally arises from cancer treatment rather than injuries like I have had - no bones were fractured or broken but I remember an immense amount of pain both times and bad acute swelling. Also, do you feel it is necessary for me to wear the stockings every day or can I have some time off, ie. in the summer? In terms of stages of lymphedema, I think I might be stage 1 but not sure - when I first had the swelling 2 1/2 years ago, it was very bad, and very easily pitted - since then it has reduced in size generally and so less pitting occurs, though at times of heavy swelling, it still pits slightly. Is this a good sign that it's got better? Does this mean it is calming down a bit/stabilising?

I'm sorry for the rant and I realise that my case is relatively mild comparative to other people's, but my friends don't seem to understand how frustrated I am and don't take it seriously, and I really wanted to talk to people who could relate and who would listen!

Any advice would be much appreciated, thanks so much.
Sarah x
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Re: New, worried and seeking advice

Postby patoco » Fri Aug 10, 2012 9:08 am

Hi Sarah

I can imagine how frightening this all is for you. Since I was born with lymphedema, I didn't go through that kind of terror.

I did though when the lymphoma appeared. It didn't help either that the first groups of doctors I had for the lymphoma didn't know about or care squat about the lymphedema.

But, as hard as it is, try your best not to let your imagination run wild on you. I have found that worse usually doesn't happen and if we can push that aside and just go on with life, we will be far better off.

Since your swelling started after injuries, that would be classified as secondary. Secondary can be a result not only of cancer, but of any trauma or injury to the lymphatic system.

Yes, you should be wearing those stockings everyday, but having said that.....those compression stockings you have may not be the best size for you either. Sarah, the very very best thing you can do at this point is to get yourself to a certified lymphedema therapist for a complete evaluation and management program. You'll be amazed at how much they can help.

BTW, don't ever feel like you have to apologize for "ranting." Just remember we have all been through this and that we are all here for you in any way we can be.

My very best to you!

Pat
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