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Worried and seeking advice

PostPosted: Thu Aug 09, 2012 11:24 am
by Sarah1234
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

Re: Worried and seeking advice

PostPosted: Sat Aug 11, 2012 9:22 am
by patoco
Hi Sarah

I posted a reply in the top forum.


Re: Worried and seeking advice

PostPosted: Tue Nov 06, 2012 10:18 am
by patoco
Hi Diana :)

Super welcome to the family, and so glad to see you post.

Don't be bashful and feel free to post any concern or question you might have.


Re: Worried and seeking advice

PostPosted: Thu Nov 08, 2012 12:30 pm
by blubrdfrend
Dear Sarah, My heart is breaking for you. I was once in your situation. I hope that you get up next week and the swelling is gone, never to return again. If that is not the case, you have joined a group that understands your grief and will lend support. We were all 21 once and we want the very best for you. Let us know about your situation. We care.