Had my rh in March, now looks like I have lymphodema in my leg. Incredibly painful, been checked out for blood clot - negative. Now waiting for Mri so they can make sure it’s nothing else, facing at least 4 week wait! Told them I’m available anytime for cancellations, think I’ll go crazy if I have to wait 4 weeks as leg is so sore.
Anyone any experience of this, any tips to help alleviate the pain. Been told to elevate my leg which def helps but minute I start walking again, agony, limping. Consultant told me to get painkillers from gp but stuff they gave me worse than useless! Need to go back next week and get something better.
Just when I was finally beginning to relax a bit.
Hi Hun
i do not suffer from lymphodema but my massage therapist is trained in the vodder technique to manually drain the fluid. Maybe call around some places and ask if they are trained in this technique. Maybe that will help you feel better.
hope it gets better!
Hi Amethyst,
I have lymphodoema following a RH and then chemo rads, but I have never had pain, just lots of stiffness in my ankles in the morning, but who knows what that is! Have you been diagnosed or is it something you think you might have. If you or your team think you have it then you should be referred to a lymphodoema clinic as they will help to put you on the straight and narrow. I didn't even realise I had the problem until I had slight swollen ankles after a plane journey. I was referred, it took a few months, but they told me I had moderate lymphodoema for which I now wear stockings and do something called simple lymphatic drainage every day. This helps to keep the lymph moving. You can look it up on google and it will show you how to do it and it is simple, but effective. My condition has improved a lot over the last 12 months through these measures. Good luck with it, and I hope they can get to the bottom of why you have so much pain.
I have had some issues since treatment and this massage has worked wonders. I do this every night before bed and I don't experience any more pain or swelling. I did stop for a couple of days once and I noticed a huge difference. Hope this helps!
Thanks for your replies. I've been tested for blood clot by gp at cns request. Then checked by a consultant and cns. They are pretty sure it's lymphodema but need Mri to check its nothing else, only then do I get to go to lymphodema clinic. Can't start massage yet in case it's something else and cause more damage. Consultant thinks there may be a pool of lymph fluid sitting on a nerve that's why so much pain, very like sciatica.
Hi
I have finished my treatment in october but ever since i had my calfs swolken to double the size every evening and they are also getting bigger... im not experiencing no pain just stifness a bit
At my last appointment they checked me with ultrasound as i had a blood cloot at the beginning but that came out clear so now i have to wait for next appointment to ask to be reffered to lymphoedema clinic
I think you could try daily manual massage that you can find on youtube ...hopefully that will help before you get appointment to find out whats wrong
X
Hi Rachel
I just wanted to ask you this way about the lymphoedema and wearing stockings as prt of treatment
I havent been diagnised with it yet still waiting for an appointment but my legs are swollen every day to double the size and i have tried using firm tights from scholl at the moment to keep it at bay and there is a slight difference in swelling if i use it but its also very uncomfortabke to wear every day. i had a private drainage massage which was nice but next day everything was swollen again....
How do you fund wearing the stockings every day ? and what about summer time....im a bit worried as i wear shorts and skirts and cant imagine wearing tights or stockings with it
Thank you for any advice
