How do I get diagnosis of Lymphoedema when my Surgery just say I have a "Malfunction of Circulatory System"?

For the past 5 years I have suffered extreme swelling of the foot/ankle and leg left side (also on right but not as bad). It is always worse in the heat of summer but now even in Winter the swelling is still present. My toes go white and look like chipolatas, the swelling domes over top of foot and ankles swell to 3 times normal size with fluid trapped right up to my knee to more than double normal size. The skin is bumpy now, red and purple, and the tissue above ankle is extremely painful, sore and throbs all the time. I have gained weight because I cannot get around and also get recurrent sciatica (this bout 6 months now) which tears through the sore tissue. I have generalised arthritis which makes sitting and standing etc difficult. The first GP I saw said I should have compression stockings but the Practice Nurse would not even measure me for them as she said she could not possibly recommend them in my case. I live alone with no family around me so would have had awful difficulty putting them on anyway. After seeing another male GP for a second opinion the surgery washed their hands of me and said I just had to lie with my feet above my heart every evening from 6pm to drain my own legs. Surely there is something out there to help me? After doing my own research and finding this website I feel that I have Lymphoedema but how do I get my Surgery on board with this? Any helpful comments would be most appreciated.

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  • Thank you for your kind reply BigLeg - I am in the process of buying the leg rest on the site you recommended and as you say it is better than shoving pillows etc around the bed. It is daytime I suffer most - when I get up the skin on foot and leg looks like a deflated balloon but I watch as it fills up with fluid very quickly. At night the leg just aches and throbs robbing me of good sleep. I have taken note of the allergens you mention and being lactose intolerant I guess wheat could also play a part. I rarely eat bread, biscuits etc. but it still could be something to look into. I am just shocked at my Surgery being so complacent and leaving me to either suffer quietly or find out for myself what could be out there to help me. Their attitude to women in their 60's is really wrong! I don't own a comfortable chair with leg rest or even a 3 seater sofa to lie on with the wedge to help in the evenings. Typical of two male GP's not to even think of that. I have started to see a lady GP at same Practice who seems far more caring and willing to look at possible causes etc. and will take all the information I have found to her when I go on February 1st. I don't think she will mind and hope she understands my needs to be listened to and addressed. I have, thankfully, an enormous sense of humour which gets me by but chronic pain is very wearing and I am determined to regain my joy of Life even if I have to do all the "Leg" work myself!! Thank you again for your caring and informative reply and I wish you better health yourself.

  • Thanks again for your observations. I need to find out exactly the cause and get some medical advice before I randomly try things. I am worried about the state of my skin and fear using the wrong skin creams etc. Am looking forward to trying the night leg rest though and will let you know how this goes. Take care of yourself

  • I suggest you phone the Lymphoedema Support Network lymphoedema.org. The website has details .

  • Thank you, I will go on the website tomorrow. I fear I am quite cross-eyed this evening after being on laptop doing research and joining LSN most of the day.

  • Hi! Sorry to hear that you are poorly at the moment. I am no physician but it sounds very much like lymphoedema indeed and possibly venous insufficiency if you have legs that darken (redish, purpleish), for instance above the ankles. If your GP is unsure of what to do, ask for a referral to a local lymph clinic (if available in your area). They will know what to do.

    There are different kind of compression garments and not all of them require a lot of strength and mobility. And they can come as separates to help you put them on (like a knee-high sock and a shorty).

    I think you certainly need care and should try to reach the Lymphoedema Support Network, as AnneBury said. I reckon they will be able to tell you who you can see locally to get proper care if the new GP is a bit at loss as to what to do.

    In the meantime, I suggest you take very vigilant and diligent care of your skin in the affected areas to prevent cellulitis (infection of the skin and tissues beneath, which can even lead to ulcers): be careful to keep hydrated (you can get advice at the local pharmacy or the LSN I think, if you are unsure what to use), dry it well but very gently (patting), disinfect any scratch, etc.

    Another thing that can help is dry-brushing. It is very gentle and stimulates lymph circulation. I think that even with limited mobility, with a light brush with a long handle, it is doable. You can find tutorials online (basically, you gently stroke upwards, starting on your feet), and brushes can be purchased online for a cheap price.

    Last comment: you should have a look at the description of lipoedema too, just in case (you seem to have lymphoedema indeed but just to be sure that you do not have this as well… GPs are often not aware of the condition).

    Best of luck with the upcoming appointment!

  • I am overwhelmed by the helpful replies to my question/post and thank everyone for their input and concern. I certainly have a lot to think about! Lipoedema does not seem to apply to me after checking it out but I will continue with my quest to get a proper diagnosis and the help I need. Thank you for your tips and good wishes for my appointment.

  • There are zipped compression hosiery.

    They are made to measure on the NHS you do

    not have to pull them on with great strength.

    There are different causes for leg swelling.

    Usually they investigate and decide what has

    caused it before issuing compression hosiery.

    If you are sure and wanted to try yourself

    Easy life catalogue has zipper compression stockings for about £15-00 a pair.

    Best wishes

  • They told me the same thing at first and washed their hands of me . But years ticked by and nothing was done and as usual nobody listens they just push you to the side .i am afraid to say they cannot be bothered half the time what I did made myself a complete and utter nuisance of myself till the doctor said in not so many words he was right and indicated I was making up . So I simply said I did not enjoy going there but needed help of some kind and question him as to why he said compression stockings but the nurse said no .he might be thinking she has sorted you out with them if he has not seen you since

  • Brave you!

    This was dreadful treatment! Of course, no-one can know how another person feels, especially if they LOOK ok! But we all expect our docs to understand. Sadly, as you'll see from what follows, many GPs still don't know about Lymphoedema (L)

    I have had my L for 29 years, since an op for cervical cancer. I'm in Norwich, where the op was performed. I was well prepared for the actual op, but no-one mentioned the possibility of having L. afterwards. Mine appeared about 7 months later, whilst I was in France, in very hot weather, and having to stand about.

    For 7 years after that, I searched for help, from herbalists, etc, and was told in a phone call to an Indian herbal doctor that the LSN had been formed, that very day. So I rang their number, and enlisted. A few months later I managed to attend one of their meetings in London, where the Medi rep told me there was treatment on my doorstep in Norwich, but that it wasn't publicised due to lack of funds. I just felt that it was so wonderful to have someone at last, on my side!

    My first treatment consisted of heavy bandaging for 2 weeks, going to the clinic every weekday and having to manage it myself at the weekends. The result was amazing, and my leg felt much lighter. Previously, it had felt, in my opinion, as though it had been encased in concrete, so heavy and painful was it.

    The treatment was repeated a couple of years later, but meanwhile, I had the stockings replaced and legs measured, every 6 months. It has gone on since then, and I still have the stockings, but I don't baulk at putting them on now! Rubber gloves help immensely with this.

    I occasionally have MLD applied, once by hand, but usually by a Lymph Assist machine.

    At home, I have a Chi machine, which does help, but was expensive at the time of buying, and I don't always think to use it. You can see these online. In the last year I have lost a stone and a half, brought about through my shock at the result of my Diabetic blood test, and that made me much more careful with my eating. ALL my Diabetic cookbooks came off their shelf, and I lost the weight so rapidly that I was afraid it was TOO quick.

    The effect has been to reduce the weight in my legs too, so that my stockings are getting more and more loose, and I shall have to be using the roll-on body glue to keep them up!

    I hope you find this helpful.

    All good wishes,

    Jude4

  • I had the same issue for years especially as I was overweight. Try telling a doctor that your 'fat legs' are fatter than they should be. Anyway I eventually managed to persuade the doctor to send me to a Vascular specialist. Demand to see one and you will get the diagnosis. The tests include a full leg scan and full physicals, but its worth it. I have primary lymphoedema and have to wear stockings daily. Once every 6 months I also have to be bandaged up to bring the leg size down, but I am used to it now. I also had an issue getting measured up for stockings as the doctor sent me to the practice nurse who looked at me as though I was mad. If you are going through the same thing then contact your local oncology department at your nearest hospital who will point you in the right direction. I used to get measured at the oncology unit at my local hospital but when I became allergic to the stocking tops I had to go to my local hospice for the treatment.

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