I have just been diagnosed with lymphedema of the lower left leg. I have been told there is a long waiting list for Trent what can I do in m

[hez67]

[jinger]

Have a click on the link below and have a look for the clinics in your area. A lot of them have contact numbers. May be worth having a ring round to see what their waiting times are for GP referrals. If you find one with an acceptable waiting time, take the details to your GP and ask to be referred there. I know a few people that have done that. You are not always restricted to your nearest clinic only. thebls.com/directory/index....

[hez67]

Thank you. I'm scared of the pain I feel and itching related to lymphedema and not knowing what to expect as newly diagnosed

[novembergirl]

You can start skin care straight away. Double base gel is good stuff, should be able to get it on prescription. If you explore this website (click on the LSN icon at the top of the page) there is lots of good info about taking care of your skin that you can show your GP. Agree with the others that it's well worth taking matters into your own hands to get a faster clinic referral. There are hardly any consultants which is why the waiting lists are so long, and perhaps you could start with a lymphoedema nurse (they often practice at hospices). They really understand how to manage lymphoedema, measure for compression garments and so on. If your GP wants to refer you to a consultant that would be excellent of course but something else in the meantime would be very good. Good luck

[morganite]

firstly there are a lot of people here to offer advice, if you've been diagnosed no reason why gp cant start some treatment to help you. You need to keep your skin clean and moisturised they can prescribe you something, ive had double base and it comes on prescription, some use e45. so they can do that, can prescribe you something for the itching and all this will help some of the symptoms. Compression is the next step surely someone at the surgery can measure your legs and get you something on prescription, My immediate care was by specialist nurse attached to the area, They assessed my suitability for compression and got me going, I wear below knee stockings, but have supplies of compression bandages too. It took 2 years before I went to a lymphedema clinic by which time it was nearly to late, so get your gp doing something. Support varies in different areas, basically most gps don't know enough about it all and we do often get sub standard care and support. ive had to fight for things because we deserve it, so be positive if you can.

[hez67 in reply to morganite]

I have had dvts 5 Times in the past and been in compression once they had to cut it off as leg was swelling and I was in danger of getting another clot. What other treatment is available the hospital mentioned massage but How do I get this with such long waiting lusts to b seen at st Oswalds hospice in Newcastle upon Tyne? I just ent know what to do I'm on antihistamines for the itching and hydromol cream to moisturize.this diagnosis has got me scared I work 2 nights as a carer nightshift I dnt know how long I can keep this up as always on my feet but then I dnt really think I'd qualify for disability as I still have my legs. So confused and thankful for any advice x

[morganite in reply to hez67]

its hard I know you can buy a dvd on LSN about massage I got them at clinic to show me how to do it, I had to leave nursing as I couldn't do the hrs and being on my feet I couldn't cope, I got refused for disability despite appealing and I cant get benefits its so unfair I didn't ask for this. Let your occ health know they may be able to advise, keep in touch.

[Hidden]

Hi, all good advice from the above. I suffer with a lot of itching largely due to some of the medication I take. As a Lymphoedema patient I do not need to put myself at risk of scratching myself silly and risk infection. So my GP as prescribed me with a antihistamine tablet which I now take daily and it has reduced the amount of itching significantly.

[shirleyburgler]

I was diagnosed after going private for the scans. My consultant put me on class two stockings just below the knee and I must say they are super. My swelling has gone down three inches and am back to normal now. My doctor prescribes the stocking.s every few months. The itching went down with wearing them too. Good luck X

[bikerchic]

I'm in the USA but I would recommend a pneumatic compression machine. It's a small machine with a large sleeve that goes over your leg(s). While you lie down in bed or on a flat surface, the machine fills the sleeve with air starting at your foot and rotates compression from there to your thigh, pushing the fluid up. It's a great tool and my leg is always smaller after a treatment. They recommend you leave it on for 20 minutes, but I've used it for a half hour or more at times. They also recommend you use it 3 times a day. I usually use it at night when I go to bed, but sometimes use it before my husband and I go our dancing or go riding on our motorcycle. My doctor gave me a prescription and my insurance covered the cost. I also wear thigh high Jobst and Juzo compression stockings. The Juzo are a lot easier to get on. I hope this helps.

[Rainbowskies]

My daughter was seen at QMC Nottingham, she had quite a long wait too! when you get seen they are brillant and you will be well looked after!