Hi everyone I’m looking for some advice please. Back from GP who advised I have Lymphoedema as I have swelling on my left ankle.
A few weeks ago during a massage the therapist commented on it being swollen & when wearing shorter trousers the following weeks I noticed how bad it was. I have zero pain.
GP asked if I always had “big legs”! No I replied & then was asked if my mother does (she doesn’t) he said it’s not water retention, it’s Lymphoedema, then laughed & told me no treatment for it. Should I seek a 2nd opinion? Thank you in advance
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Both ankles or just one? How long has it been like that? Even though he said there’s no treatment for it (not true!) did he suggest you should be referred to the local lymphoedema clinic, to get advice/support/treatment?
Both were swollen on Monday when I noticed it but left is terrible & the right is ok.
I had a massage 4 weeks ago & she commented on the left ankle being swollen but didn’t take any notice until I had my ankles exposed this week & seen how big the left one was. No, GP said nothing about referral - he wrote down what it was called & laughed when he said “unfortunately no treatment for it” & goodbye!
Ask for a referral to a vascular doctor for assessment. Vein issues can cause increased swelling in one leg or both. If it is Lymphedema (looks like it), a Lymphoedema Clinic can help you with reducing the size of your ankle and recommending what type of compression socks or stockings you should wear to keep it under control.
If you’re in the UK find a local qualified lymph drainage therapist who will be able to give you massage specific for lymph drainage. Many Lymphoedema therapists are also trained in advising/fitting appropriate compression. The wait to be seen at Lymph Clinic might be 2-3 months so ask your GP for a referral ASAP.
I am asuming you live in UK, as it seems only in Britain doctors would dare to say there is no treatment. First, join the LSN (Lymphoedema Support Network) 2. Ask their advice where you can go - which hospital locally has good L. clinic (they vary). 3. I have written about MLD massage on aftercancers.com - it helped me enormously (recommended by Hungarian specialist). If you want MLD the LSN can recommend pratitioners, but you have to pay.
Thank you I am in the UK. Can I ask, is it something that can go away as easily as it’s came on? I’m 34 years old & feel like it’s came out of nowhere.
I seen my osteopath on Tue who said my lymphatic system could be blocked. He did a few techniques which improved the appearance of it. I’m also dieting & seen no change in my weight for 4 weeks & was hoping it was just normal edema as oppose to Lymphoedema
What worked for me, but it took nearly a year of treatment, was MLD (Manual lymphatic drainage). However, I had had L. building up over years, and it was so annoying I felt like getting a razor and slashing open my skin! I eventually was given a six-week course at the local L. clinic in Oxford on a Haddenham machine. This costs £2,000 - I would love to be able to buy one to have at home - but at the moment make do with monthly MLD which costs me £45 - and keeps L. down !
Your symptoms could easily be Lymphoedema. Advice from others all good, particularly contacting the LSN, Lymphoedema Support Network lymphoedema.org. Lots of information on their website including their helpline telephone number. It is only a small organisation so you will need to wait until Monday for telephone advice. Also look up Lymphoedema on NHS choices. Also don't be put off by what you see on the internet (which is why the LSN and NHS Choices are particularly good). I have lived with it since I was a child and I am fine.
Both LSN as mentioned and the Lymphatic Education & Research Network are your best ports of call. There are numerous web symposiums by specialists, researchers, clinicians etc on the LE&RN site symposium link - they are free so watch those not YouTube as there is so much misinformation on 90% of YouTube. Lymphoedema is not a ‘one size fits all disease’ particularly for Primary LE (genetics related) so some lymphies have little/less pain, swelling or mobility issues while others have more difficult symptoms to cope with, pain and mobility issues. If you leave it untreated ie not engaging in daily compression therapy, lymph drainage, meticulous skin care to prevent infection, daily lymph moving exercise, etc then it will worsen. It’s a staged disease and if caught early and well managed it usually can be prevented from escalating into the next stage. It takes daily diligence, sadly it’s not a matter of simply taking a tablet as no drug treatment or cure currently exists.
While usually not fatal, we are at high risk of Cellulitis infection which can swiftly turn septic. Hence the importance of daily skin care. LSN site has leaflet on this).
There are some very good lymphie support groups on Facebook and Instagram. The best FB groups are closed to public access ie must request to join, and they are responsibly moderated eg L-W-O support group and Lymphie Strong Inspiration Group. Beware of the open groups that are in full public domain offering no privacy.
It’s important you’re accurately diagnosed so ask (demand!!!) for a Vascular Consultant and/or Lymph Clinic referral. (Some parts of England don’t have a local clinic unfortunately due to insufficient expertise in LE and funding issues).
For many years the gold standard diagnostic scan for LE is Lymphoscintigraphy. Most large UK hospitals have this and often is ordered by a Vascular Consultant.
Keep up your diet presuming it is free of ready meals, low sugar, salt etc. Sodium/salt exacerbates swelling and many tinned foods and ready meals are filled with salt. Many lymphies find dairy, wheat, alcohol etc exacerbates their swelling. Drinks lot’s of water!! More water helps lymph move/drainage, little water makes it thicker/sluggish. Aim for 2- 2.5 litres per day your lymph system will be happier!
Find a local qualified MLD therapist on MLDUK.org.uk Therapists on this site are vetted for proper credentials and have to meet training standards. MLD is a specialism, not ordinary massage; some deep tissue and Swedish etc massage therapists think they know how to do lymph drainage - stay clear of them or they could further damage your Lymphatics if already broken.
You should find that regular MLD is extremely powerful and effective in alleviating discomfort and assisting to preserve limb size, in conjunction with compression therapy. I’m afraid your symptoms won’t just disappear if you do have Lymphoedema. Catherine x
Thanks CCT67 I will definitely be chasing for a referral as I am so angry I’ve been sent away & told nothing can be done, putting my health at risk with this nonsense advice from a Dr!
Yes diet very important thank you. I have been on one since February & the weight has been stuck the same for 3 weeks. I drink 3l of water a day & do not drink alcohol.
My left hand also feels tight as if it’s swollen. Could this be related to my left ankle swelling? It’s very uncomfortable for me but not sure if it’s a coincidence. Thanks again for great info!
Hi, your hand swelling might be related but neither me nor this site can diagnose what going on for you. I have Multi Segmental Lymphoedema (read my profile for more info) so can relate to the symptoms you’re describing in lower and upper limbs. A feeling of tightness in the skin is common, as is a prickly sensation in the skin escalating to more painful sensations. Don’t use hot water or go in a hot environment eg sauna, as it exacerbates swelling and discomfort. I only use warm water to bath in and cool water washing up (or wear heavy duty marigolds if needing hot water).
Great to hear you’re keeping up your good eating/diet. You mentioned the weight loss stalling. Have you lost weight from your waist up, but not from from waist down in your legs? Or have you lost weight throughout your body?
You are not alone in your GP experience - many are ignorant about LE resulting in minimising and often missing the diagnosis entirely. UK and US doctors don’t receive proper training on the Lymphatics in medical degree programmes (only 15-30 minutes) despite the fact that if a human’s Lymphatic system fails entirely they’re dead within 48 hours. It’s rare this occurs but nevertheless shows how important our Lymphatics are!! For starters our heart won’t function without our lymphatic system.
Make a big fuss if your GP doesn’t respond the way you want, go to a different one in the practice. Many lymphies have GP horror stories despite the efforts of LSN to promote better training/professional development for GPs xx
Wow read your profile what a lot you are going through! I’m sorry you have to & that there is not enough advice out there or properly trained Drs. I’m going to make another appointment with a different GP next week & hope I get better info.
Totally agree it’s absurd that they don’t have enough training on this condition, there is no excuse as you say without the lymphatic system we would not survive.
I have lost weight all over but stalled the past 3/4 weeks which I thought could just be water retention but from reading online water tablets shouldn’t be taken if you have Lymphoedema xx
Luckily I have a superb treating team at George’s Hospital, London which has an internationally renowned specialist team in Lymphatic disorders and LE genetics research. And I’m seen 6 weekly at my local hospital LE clinic which is headed up by a brilliant specialist LE nurse. My positive experience is not universal, Sadly LE services are post code lottery in England.
Diuretics exacerbate LE as our lymph system needs more fluid/water, not less. Your weight loss stall could be linked, advisable to stop taking them irrespective of weight. Well done for being committed to losing weight you’re Lymphatics will thank you! Obesity is now becoming a main causal factor in incidences of secondary LE in both the US and UK.
Most lymphiies report improved often vastly improved symptoms after weight reduction (less strain on the functioning lymphatics) and clean wholesome eating.
Movement is also critical for lymph flow - swimming is the best as water provides natural compression. Rebounding (ie mini-trampoline) is also good due to negative gravity), as well as walking - swiftly if possible.
Good luck with your GP. You can find out your local clinic from LSN, just give them a call xx
I wish European hospitals were as Internet-savvy as US ones. As a journalist writing about cancer I find US official websites such as MD Anderson, Dana-Farber, Johns Hopkins etc are very informative. But when I had horrible side effects from cancer drugs during treatment in UK, my savvy friend the Chaplain at the top UK cancer hospital used to tell me to go to European hospitals. Europeans have better survival rates. And it was a Hungarian who solved my painful, heavy swelling after months of UK treatment. What she suggested was MLD - this worked a treat and I can now see my ankles !
I’m so glad you had treatment that worked, it gives me hope!
Can I ask if you get treatment regularly to keep on top of it?
I’m also waking up with tight fingers on my left hand (same side as ankle swelling) I can’t even grip anything. They aren’t physically swollen but feel it. Do you think this is connected?
Yes - once I got L. under control, I find the best way to prevent swelling up is to keep up with 4 - 6 weekly MLD sessions.
A tip - I did make a fuss and wrote to my MEP several years ago. He got me £2,000 worth of MLD at the private Cromwell Hospital - which was brilliant! But once L. was under control I now have to fund maintenance myself. I write about what is currently happening on aftercancers.com - look under News or Lymphoedema
Thank you for the advice - will see how I get on with GP referral but doubt it will go nowhere after the last chat with him! Will try my MP if I don’t get anywhere
I live in the U.S. and was diagnosed with Lymphedema by a male doctor. He was rude and told me there was nothing that could be done other than wear compression stockings and elevate my legs often. His attitude made me furious as I sat there with a swollen left leg so big that I was unable to wear a normal shoe.
I left his office and found information on my own. It was devastating enough to have such a visible health issue then to have a narcissistic, non-sympathetic, non-caring doctor act as if I didn’t matter. It has been a life changing diagnosis and I am coming out of the shock.
Anyway, I found a website that has expandable shoes that are designed by a woman with Lymphedema. I have not received my order yet, but they sound promising; pandereshoes.com. Check them out.
Today, I plan on finding and scheduling an appointment for my first Lymphatic Drainage Massage. Also, rebounding is excellent for the Lymphatic System and this can be viewed online under “rebounder exercises for the Lymphatic System.”
I was told I had lymphedema in both of my legs. I had a blood clot in one earlier about 8 years ago so I went to a vein specialist about 6 months ago. After losing weight I noticed the bottom of my lower legs to have a hard, hurtful area in the back in the big muscle like a ridge in both legs. I just couldn't believe I had lymphedema and my primary care suggested exercises. I then connected with a terrific physical therapist that I had known in the past and even from the onset he stated, no that is not what you have. He gave me exercises to do and slowly but surely that painful area has gone down, I don't wear compression stockings anymore and he said I will be back to normal. The exercises he gave me are taking the fluid out of that area and he is strengthening my legs up so that the area that overcompensated when I had that injury will become normal again. They were very hard and hurt like in the gastronemic area. I am not saying that lymphedema does not exist but it was worth a try for me and is for anyone. Best of luck.
Thanks GowithGod, I’m happy you were successful with the exercises & would be great if could share them? I’m seeing my osteopath on Tue to see what he thinks of my diagnosis since GP had no info
I want you to understand, I am not completely cured, yet it has helped greatly. It has given me great hope where I was angry that I had the blood clot to begin with 8 years ago, but grateful to be around still. Then last year for lent, I gave up all white things, started with sugar, flour, bread, and potatoes. I read a lot and noticed that I was losing weight. I lost approx. 48 lbs. And was thrilled, but this also revealed I has some problems with the bottom of my legs that I had not noticed because of the extra weight. I knew something was wrong, but now had lost enough weight to feel the hardness. Anyways, the one exercise I like is you lay on floor lift your legs up and put on wall and push the balls of your feet into the wall about 20 to 30 times.
This releases the fluid out of the area and makes you stronger. He also has me on the floor and lift one leg to my chest and with other leg raise the heel of my foot up and down about 20 times on each leg. Small movement but effective. The other exercise that has helped greatly is to lay on your stomach, put your legs together and dig your toes into the mat and push back and forth gently. The PT is extremely good and knowledegeable. I also realize I was looking for something to latch onto to work for me. I was so upset when I had finally lost weight and was told that I would have to wear compression stockings the rest of my life. I will say I have some and they are not as bad as I thought and my suggestion is if I had to wear them, I would. I am happy to give out this knowledge, and think that people should look elsewhere when not happy with their situation, but if you truly need to do what is suggested, then do it and be the best you can be. God Bless and great luck.
Thank you Jan - it’s sad we had a similar experience with the unsympathetic Drs. I don’t understand why some chose to be in that profession with such a terrible manner.
I’ve found a clinic online in my area who is qualified in Lymphatic Massage & hope to get an appointment soon. I too feel like I’m in a state of shock & angry at my Dr for sending me away with no info or hope. Thank goodness for this helpful site!
I reacted to that awful, thoughtless, and narcissistic dr. with great assertiveness about his disgusting manner then walked out of his office suggesting that he stop wearing such cheap suits😡🤬🤯. I was exhausted🥵 when i got into my car and cried.
Would you mind sharing what type of exercises the dr. suggested that you do bcs it sounds like they were helpful. I am find that the rebounder exercises make my leg , well, my whole body feel better. I was injured at word and during the recovery time of 2.5yrs I gained 35 pounds, so Monday I begin the Keto Plan. I have never been this weight and my leg leg swelling started after that. I, certainly, will do the work it takes to get back into shape.
Also, I am grateful for the people and their information shared on this site.
Jan
Hi,
I have a great GP who declared his lack of knowledge about Lymphoedma and was more than happy to undertake the training modules.
I have big legs due to Lipoedema, diagnosed at St George’s.
My GP was happy to undertake that learning module too.
( As others have said LSN is the best place to learn about most things about Lymphoedema including the learning module.)
I have severe secondary Lymphoedma post breast cancer treatment in 2003/4.
I joined our local surgery's patient group and got to know the team well,and vice versa. I used to take copies of " Lymphline " in for them to read after I'd finished with them but since most of the team have undertaken the updated training module now I pass them on to other patients instead !
I believe we all need to learn as much as we can about our long term health problems and particularly so Lymphoedema.
I have the dual condition so my arm is almost impossible to treat except for Liposuction but my CCG won't pay despite the bids going in from St George's..
My husband died from secondary renal cancer last year. Life can be so very hard.
Thank you for the reply! I visited a MLD therapist & she advised it looks like lipoedema. Surgeon in UK also advised it’s lipoedema also, researching now for surgery
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