Need some advice

[Jimin2016]

Hi my name is Emma , I have just turned 50 and one day woke up with a swollen right foot, my right calf is swollen too and my foot and calf feel really tight and stretched and very painful. Been to GP and over the past 4 weeks been having various tests to check my Heart, liver, kidneys , bladder and check for any Ovarian Cancer and all came back clear, I am going to see her on Monday and she did say if all test were clear then it would be clear that it would be Lymphedema but I have not had Cancer or been in an accident of any kind so need some advice from anyone please if it could be anything else ? any advice I would be really grateful

[Lynora]

Where are you Emma?

Lymphoedema can happen spontaneously due to genetics (Primary lymphoedema). When swelling occurs after cancer treatment, it is known as secondary lymphoedema.

Have you had a Doppler scan of the legs, to check the blood supply and rule out DVT?

[Jimin2016 in reply to Lynora]

Hi, sorry for late reply. No not had that done yet, do you think it could be anything else as I am really hoping it is not Lymphoedema

[Jimin2016]

I live in Canterbury Kent

[veriterc]

I am NOT keen on unproven theories, but I remember once idly reading to beware of insect bites as the author had landed up with lymphoedemia. I had a nasty bite and a few weeks later I had lymphoedemia. But I had had breast cancer and operation a couple of years earlier.

[Jimin2016 in reply to veriterc]

Hi Veriterc, I am concerned too that's its not a clear and that they have tested for the obvious and now telling me it has to be Lymphoedemia but I don't know what I should do next ?

[Jeanne53]

Hi Emma, if yours is recent, consider seeing a chinese medicine doctor to treat it with chinese herbs. I have primary too (just appeared, but decades ago) but thankfully I've been able to control and minimize it with chinese herbs. The more recent it is likely the easier to treat...hopefully. There's no downsides to trying the herbs as long as you can find a reputable chinese medicine doctor who gets herbs that are free of lead and heavy metals (ask where the herbs are sourced from). It works for me---had to do it for four months the first time to see any result, then was on them for a year, but that minimized the swelling for several years, and just recently had to do a couple months, but that way its under control without compression, etc. Try it! Nothing to lose. And of course, stay very active--walk alot or whatever, the more frequent movement the better. And eat well. I do vegan/plant based and highly recommend that, but whatever you do eat a lot of veggies, fruits and healthy things to minimize the impact on your already compromised lymphatic system. Minimize chemicals you put on your skin...that can put a strain on your lymphatic system too. But for many of us, it can be controlled if you are very proactive! Best of luck!

[sharon1234 in reply to Jeanne53]

Hiya can I ask what Chinese medicine you use please because I have really bad lymphedema through cervical cancer and no active lymph nodes in my left leg

[Jeanne53 in reply to sharon1234]

Hi Sharon, it is definitely worth a try. The chinese herbs should be done through a chinese medicine doctor, otherwise its almost impossible to get a result or take the required quantities--because you have to take a lot, then take it for a longer time. The first time I took them, it took four months before seeing any change, but then the swelling started to drop and then just went back to a minimum level where i didn't notice it much. I took them for about a full year. The effects lasted a few years then the swelling started a bit earlier this year, but then I started taking them again and it dropped back down within 30 days. You can google chinese herbs for lymphedema for more information, too. Not many people have tried it which breaks my heart....I am very thankful it has worked for me (and some others) so trying to spread the word. While it didn't cure mine completely, i can live a normal life (although I am very careful with diet and exercise, knowing that I will always have a compromised lymphatic system).

[sharon1234 in reply to Jeanne53]

Thank you so much for your very well explained reply and full of lot of information . I'm going to Google it and see what it comes up with but I will be very careful because there are a lot of fake people out there who are not genuine . But thank you so much I really do appreciate it... You take care xx

[Jimin2016 in reply to Jeanne53]

Hi Jeanne53, Thank you for your help and I will look into Chinese herbs this week, I used to be able to walk 3/5 miles a day but sadly I cant anymore as it makes my foot and calf more painful and swollen and it feels so tight and it just me feel so sad as I love to walk, will a compression stocking help me ? my GP has referred me to clinic but it will be a few weeks wait I have been told, which worries me when my foot is so swollen and painful, I do a vegan diet so that's good, but wanted to ask your thoughts on skin brushing ? any advice would be really helpful

[Jeanne53 in reply to Jimin2016]

Hi--definitely wear compression stockings if it is getting worse, absolutely. You want to do everything you can to stop it from progressing and those are critical. Also elevating your legs are important, I used to have to elevate mine within 20 minutes after exercise or they would swell fast. I think it is different for everyone. Also that self massage can help keep it under control too. Rebounders are good too. As others mention, visiting a lymphedema therapist can help you bring it down t,hen these measures can keep it under control. Definitely do that....you want to stop it from advancing...the lymphedema therapist can advise you more specifically. The chinese herbs should be done through a chinese medicine doctor, otherwise its almost impossible to get a result or take the required quantities. It takes some time....I took them four months before seeing any change,, but then the swelling started to drop and then just went back to a minimum level where i didn't notice it much. I took them for about a full year. But definitely keep doing all of these things in the meantime and don't stop until the swelling drops. Thankfully, the chinese herbs control mine well enough where I dont have to wear compression, you'll know when that is the case. You can google chinese herbs for lymphedema for more info, too.

[cac14usmc in reply to Jimin2016]

Try looking up arachnoiditis. After dealing with back pain for years I started getting the feeling of fluid or blood running down my leg. After checking and finding nothing each time had a few test run and was told this was my problem. Not much they can do for it but it was good to find out what it is.

[AnneBury]

My right leg/foot (below knee) suddenly swelled when I was 11 and my left when I was 30. My sister has it as well as does one of my brothers. We have no idea where it comes from. It is a nuisance but I reckon it hasn't stopped me doing what I want in life. Your GP should refer you to a Lymphoedema clinic. Also the Lymphoedema Support Network lymphoedema.org has lots of information for patients and medics (including details of clinics). Beware of horror stories and people who tell you it will get worse and worse. It does need to be managed, and there are issues (like getting ok shoes), but generally fine.

[Jimin2016 in reply to AnneBury]

Hi AnneBury, I have spoken to the support Network who were really lovely and are sending me some information leaflets, and my GP has referred me to a clinic but said it take a few weeks which worries me, I am going to stay positive and do everything I can to manage it , do you know where is good to buy shoes ?

[AnneBury in reply to Jimin2016]

Now I have swelling in both my feet/legs I do have the advantage of the same size issue in both feet (although one is a bit fatter than the other). It has been great that brogue lace ups have been in fashion in recent years. I wear wider fitting and usually a size 8 (although I measure a size 6). The laces hold them on and Clarks had them. I am used to shoes that are too big in length. Evans have lots of wider fitting shoes, but some are too plasticy for my taste and comfort. For best I have suede (nice and soft) court shoes usually from Russell and Bromley - not easy to walk in but I manage. I have also found funky trainers (again size 8). The other trick is men's trainers, as they are wider - size 7 usually ok for me with men's shoes. My best advice is "lace ups" in larger size than before swelling - get some trainers - preferably a bit funky. Sometimes ECCO and Hotter work. Don't buy online. You do need patience and it can be frustrating (and a bit upsetting). Obviously you will need insoles for your thinner foot.

[Mrsgillers]

Hi Emma, hope you are ok. X i would suggest you to call 111 and have it checked out. There will be an out of hrs dr near you but it is important to rule out a dvt or similar.

If it is lymphoedema - Reflexology lymph drainage is amazing for lymphoedema and has published research behind it (although this is just for breast cancer secondary lymphoedema at present).

[veriterc]

Did you contact the Lymphoedema Support Network? They are very helpful. If you have already done this, then I am afraid it is going to be up to you. We are very bad about treating L. in UK - I had to go abroad to get a sensible plan. But keep on. Remember you can ask to be treated in another area, and I have had good advice and treatment at the Lymphoedema clinics in Guys Hospital in London and at John Radcliffe at Oxford. But you will need to be referred to a major centre. Unless you can be treated privately, then you can choose where to go.

[Chocolate-e-clare]

Hi Emma - first test to be done with any sudden onset of swelling in a leg (especially the calf) is an ultrasound to check for blood clots. Surely you have had this test done already? Lymphoedema does not normally appear suddenly - usually it is a gradual/slow onset - but some people do notice it 'suddenly'. Hope you get answers soon. It is really important (for all of us) to try to be a healthy weight - so if you are carrying excess pounds, try to drop them. Hope you are more comfortable soonest. xo. Congrats on turning 50 by the way!

[Jimin2016 in reply to Chocolate-e-clare]

Hi Chocolate-e-clare,

Thank you for your reply, I guess to me it came on suddenly but maybe I could have not been paying attention to what was going on as life has been pretty stressful, I was sleeping rough for a few months and only recently been housed in some supported housing, I am now trying to loose some weight as I am about 1 and half stone over weight, thank you again for your support.

[AnswerDiggingMom]

Go to ED immediately and have an ultrasound done to check for a blood clot. If pulling your toes toward your head increases pain, this is another sign for clot. This should have been done first before any other tests. It is simple and quick. Especially consider this as the cause if you have had recent travel, smoke, are on the pill, or are diabetic. Another cause can be compartment syndrome from over use of the calf muscle or shooting drugs up in the leg. Ask for the ultrasound! And, yes, compression stockings are very good for helping to decrease swelling in the legs for edema, preventing blood clots, and helping to get the blood back to the heart. If not a clot, you may also get swelling from a weak heart (congestive heart failure). An ultra sound for the heart called an echocardiogram can help you determine if it’s that. Medication can help strengthen the contraction of the heart and keep the blood from backing up. Echo is another easy test that can tell you a lot. Either way, see a good doc for the best advice!!! Good luck!

[Jimin2016 in reply to AnswerDiggingMom]

Thank you DiggingMom for getting back to me, I have had heart tests, Liver and kidneys blood test and scan and also pelvic scan done too and all were clear, I am having my stocking fitted next week and a Doppler Scan done on 1st of May so see how I go from there and I guess I am still hoping it could be something else.

[Bev-1966]

Hi jimin2016,

My ankles feet and calf’s were swollen and had all test you had done and all clear, was sent to Lymphoedema clinic who said I had LD just by sight no tests well apart from Doppler which was fine I was given bilateral full leg compressions 3 year ago but sept last year I had my thyroid function test as have to have them every couple of years for my hypothyroidism and doc changed my thyroxine from 125mg to 150mg and my swelling has virtually gone now so no longer wear compressions and back to see LD nurse in June so I will tell her about this and see wat she says.

I also have had nicks and cuts in my leg and not had any infections or nothing either so I think that is another sign that I don’t have it.

[Jimin2016 in reply to Bev-1966]

Bev-1966,

Hi thank you for getting back to me, and I feel that there may be some hope for me perhaps ? its really great that you don't have to wear compression stockings anymore that's really great news

[Bev-1966 in reply to Jimin2016]

My nurse doesn’t no I’m not wearing them yet not seeing her til June.

[DeadfootMo]

Hello, Well you don't have to have an accident to get Lymph oedema. You can get it after an accident or after surgery but there are many other causes of this issue. If you do get Lymph oedema sadly there is no cure but it can be relieved. It is supposedly relieved by medication, massage, keeping the leg raised above your hips and with compression socks, tights or bandaging. I gather even surgery can be used in some cases, but as a condition very few health professionals know enough about it. I have it because some glands in my body are not working properly to shift fluid and there is some pressure on my veins, so I have a type called vienious lymph oedema. I am not very happy about the situation because had my GP's listened to me earlier on the many occasions when I had cause to visit them about my feet a diagnosis and treatment could have been given some 4 years earlier. I am 56 and 57 this year. So I have had the problem for almost 7 years now.

It all began, at least I thought it did on holidays after long days of travel, which is when my feet would swell, feel hot, go reddish and generally feel very uncomfortable. It would take a good nights sleep to go down but if travelling the next day it would appear again and may be worse the next time especially if my knees started to ache and swell. I started to hate having holidays for this reason in the summer, but it felt no different in cooler seasons so assumed it must be the travelling and sitting in a confined space for serious lengths of time. Then I started to get swollen feet throughout the summer and after 3 years of suffering made my mind up to go to the doctor on a regular basis, to ask what could be done. For two years I was told to join a gym, go on a weight watchers diet, lose loads of weight and buy into Jamie Olivers 15 minute mediteranean recipes or go on a low GI diet. At the back end of 2016 a locum GP told me that she thought I had a lympo oedema so sent me to a clinic in a hospice for treatment in 2017.

Whilst there my legs were measured with a tape measure every inch into my thighs, I was told I might have to wear compression socks, so was shown a pair and how to get them on etc. I was also x-rayed with an odd looking machine which drew a picture of my legs whilst measuring how much water they actually contained. I was then spoken to by another professional specialist and placed onto a lymph oedema education programme for 4 successive weeks. At the end of this my compression socks arrived plus other things to enable putting them on.

I gave the compression a fair run but felt it was not for me. not for me because I ended up with extra ridges that were sore and pink, pins and needles and a loss of sensation in my legs and feet, they were also torturous to get on and off, so much so that one day I felt the need to cut them as I struggled to get them off, they formed a tornequet and cut off my blood supply. But I couldn't even do that. Instead I was reliant on a friend to help me get them on and off as they were that rigid and stiff, I couldn't do it without suffering asthmatic or COPD spasms.

Last week, I was asked back for a review and mentioned all of this, so was re-measured and told they would get me the next strength of compression down as something was better than nothing. I also informed the nurse they had me down as a sedentary person when I am not. I teach so often stand most of my days, only sitting down on rare occasions in between when planning or at home after a tiring day. So here's hoping what comes is right at last. But 7 seven years is an awful long time to reach a satisfactory conclusion.

I hope for your sake you find out information and treatment a lot quicker than I.

[Jimin2016 in reply to DeadfootMo]

Hi DeadfootMo,Thank you for your reply and I am sorry to hear what you have been through and still going through. I am getting my stocking fitted next week as my Doctors surgery has a clinic there and a doppler scan on 1st May so lets see how I get on with my stockings. Fingers crossed

[helen66 in reply to DeadfootMo]

I was diagnosed with lymphoedema when I was 20 when both my ankles swelled up suddenly. At that time I was offered no treatment or support, just told to get on with it. Finally last year, at the age of 52 (yes 32 years later!), my new GP finally referred me to an amazing lymphoedema clinic. I received a 4 week course of compression bandaging which reduced the swelling quite a lot. I am now wearing the strongest compression stockings they could give me and the swelling hasn't increased. I was also given (on prescription) a device called a Steve+ (see stockingaid.com/) which is amazing for helping me get the stockings on and off! I have also been referred to St George's Hospital in London as they believe I also have lymphoedema in my arms and possibly elsewhere. It is also genetic as 3 of my cousins and my grandmother had it too and we all have thyroid and other endocrine issues. In 32 years I have rarely taken time off work, raised 2 children and I walk everywhere as I'm worried that if I stop moving I will be giving in to this debilitating condition! Keeping busy also helps my mood and keeps me positive. Take care and try a Steve for putting on your stockings - he's become my best friend!