Primary lymphoedema - early stage?: Hi everyone! I am... - LSN

LSN

4,818 members2,245 posts

Primary lymphoedema - early stage?

Doro9
Doro9

Hi everyone! I am new to the community and to lymphoedema (haven't been diagnosed yet).

Basically, my left leg and foot swelled all of a sudden about six months ago. It was normal before dinner and it looked like a sausage after. Since then, I've had pretty much every test to rule other conditions, as I experienced swollen lymph nodes in neck, groin and collar bone. A vascular surgeon has now suggested that it could be primary lymphoedema, and my GP has referred me to a clinic.

I have read some information and some things do not seem to add up. For instance, my foot came back to normal after three days, and most of the swelling is now on my thigh area (the other thigh has started to swell too, although it might be lack of exercising). The swelling doesn't vary - I measure my leg frequently and the swelling has stayed at 43 cms day and night. At the moment, I am able to "pinch" the base of my second toe and there seems to be no "pitting", although my thighs are red and warm, and I have been taking antibiotics for a few days.

Did anyone start with similar symptoms? I know that every case is different, but I would love to hear from others' experience :-)

16 Replies
oldestnewest

Hi Doro9

I’m new to LSN too.

Your experience sounds completely different to mine, sorry.

My Lymphoedema has been since birth basically and swelled ‘slowly’ until it was noticeable in my teens.

I hope you aren’t in any discomfort.

I have no pain, redness or anything like that. Just a pretty big leg compared to my left - and it’s unsightly - lot of variscosity particularly around the hamstring.

My calf is pretty big too.

However my legs are also quite muscular so that may go some way to helping the problem.

I’ve never had any pitting either.

All of the above has contributed to me being quite unwise - I stopped wearing my support stocking years ago and haven’t done much manual drainage.

I’m lucky I can get trousers to fit me and because I seem to be ‘getting away with it’ I haven’t done much prevention.

However I hope to return to the clinic this year.

I hope yours calms down and the redness & heat subsides and that you get a clear diagnosis soon.

Oh, and I never wear shorts.

AMcL

Doro9
Doro9 in reply to AMcL

Hi AMcl!

Thanks so much for your reply.

I am really sorry that you've had to cope with lymphoedema for such a long time. However, it is a relief to know that your are not in any discomfort or pain; my infection has subsided thanks to antibiotics, so I feel a lot better!

I am happy to read that you are planning to go back to the clinic soon. I am quite new to this but most people on this blog seem to suggest that compression stockings are a must to reduce volume.

At the moment, I am trying to 'renew' my wardrobe, as I have always worn skinny jeans almost everyday. I am Spanish, so I'm really dreading to visit my family there in the summer :-/

Hi Doro

My experience was similar to yours in some ways. It's great that you've been referred to a specialist lymphoedema clinic - my journey to get to the right treatment was much longer!

I was on a long walk (consecutive days walking 10+ miles a day) and part way through the third day my lower right leg and foot became red and uncomfortable and swelled a lot. I checked carefully and there was no sign of any tick, bite or sting, basically nothing to explain it.

To cut a long story short, my GP sent me of to check for DVT - no problems there. I was referred to a vascular clinic, where they found no cause - but unfortunately at that point things went wrong as the GP then treated me as if I had a vascular problem. I was given ineffective stockings and prescribed diuretics. Over that year my leg got worse and worse and I had several episodes of cellulitis, and the swelling extended to my thigh as well.

In the end I asked for another referral to the vascular clinic, where at last I was told clearly that it was lymphoedema and I needed a referral from GP to specialist clinic.

At that point I did my own research, found this group, checked out what specialist NHS service was available in my area and got an appropriate referral from my GP.

The wonderful specialist nurse measured me for an appropriate support stocking, which I have now been wearing for over a year with excellent results - my leg has reduced from 69% at my first appointment to 25% at the most recent.

Because there was no indication of why I had suddenly developed lympnoedema, the specialist clinic then recommended a referral to St Georges in London for lymphoscintigraphy as this was not available locally. This led to a diagnosis of primary lymphoedema affecting both legs (but fortunately only one is symptomatic). No family history of anything similar.

However - the good news is that with the proper treatment my leg has considerably reduced in size, I've had no recurrence of cellulitis, and I'm back to being very active. I'm a slim 64 and walk at least 5 miles every day, and up to 15 miles sometimes. Wearing a thick support stocking is a small price to pay!

My advice would be to do your research before your clinic appointment, and know what questions you want to know the answers to.

Good luck! it sounds like you're already on the right track.

Doro9
Doro9 in reply to DeborahS32

Hi DeborahS32!

Thank you so much for sharing your story! I am sorry to read that you had to wait such a long time for your diagnosis. I'm glad you got there in the end and are feeling well now :-)

Actually, my diagnosis has not been as straight forward as it seems. I had a mini-stroke when I was young so it was pressing to rule out any possible risk of vascular malfunction. This was done in Spain's A&E (where I was visiting my family) and later in Scotland, where I live.

After all necessary checks, I went to see my GP who suggested it was... a hernia! I could feel that it wasn't, plus I have a friend in Spain who is a surgeon and told me that just couldn't be (she treats cases of hernia daily). I had to go private to prove to my GP that it wasn't a hernia - all they could find was a bunch of swollen lymph nodes.

From then on, all the attention was placed on my lymph nodes, which started to swell all over my body. They checked me for almost everything, all results came fine. Last time I saw my GP I enquired about my leg - he told me to return in 6 months time.

I went to Spain to visit my family and I asked my surgeon friend if she could have a look at my leg. She is a digestive consultant so she took me to see a vascular surgeon. He ultrasounded me from waist down, placing careful attention to any possible blockage, of which he found none. It was him who then suggested primary lymphoedema and referred me for a lymphoscintigraphy next April.

When I came back to Scotland, I had to get back to the GP due to my leg infection. It was a different doctor this time and, when I told her the whole story, she said I was lucky that my friend took me to see the vascular surgeon. She then referred me to the lymphoedema clinic and now I'm waiting for my letter.

So, it has been a very intense six months. I have been misdiagnosed before (I was told I had multiple sclerosis when I had that mini-stroke) so I guess I'm now a bit restless regarding doctors' opinions.

Anyway, what a long post! I feel I needed to get it out of my chest, so sorry about that!

I am quite an active person as well (love walking and running) so it is very encouraging to read that you are able to exercise so much.

Thanks for the tips and the encouragement!

I started with very similar symptoms. Originally my left leg would swells below the knee and over night when i slept it would go back down this was for the first six month. Then it reversed and the swelling moved to mostly my upper leg and thigh. It took over a year for someone to diagnose me as Lymphedema. Good luck but maybe start wearing compression stockings in the meantime? My biggest regret was not starting earlier but i didn’t know i should...

Doro9
Doro9 in reply to Als315

Hi Als315!

Thank you so much for your reply and the tip. I am really sorry to read that it took almost a year to get your diagnosis. Sadly, this seems a common situation for most people on this forum...

I wore compression socks for a couple of days and I think that was when my thighs got red and sore. I was obviously wearing the wrong ones...

Could you recommend any generic brand/size in the meantime? I am completely lost as no one has really measured me yet.

Thanks for the help. I really appreciate it :-)

Lynora
Lynora in reply to Doro9

Hi Doro9 - you say above that you have been referred to a lymphoedema clinic. Don't invest hard earned dosh in 'off the shelf' garments until you have been seen. The clinic will assess and measure you for the most appropriate product - as you have already found - sometimes they don't work, and can cause problems. Plus, you should get them on prescription. In the meantime, could you try and get some manual lymphatic drainage? There are practitioners listed on mlduk.org.uk or look at some useful YouTube 'self lymphatic drainage' videos. The LSN also sell excellent self-help instructional DVD's.

Doro9
Doro9 in reply to Lynora

Hi Lynora!

Wow! Thank you so much for the advice! Yes, I think I would rather wait to be seen, as I don't want to mess up again :-) Thank you for sharing the link. I can see there are a couple of therapists in my area, so I will enquire whether MLD will help at this point.

Yes, the LSN website is excellent! I have learnt all I know about lymphoedema there and on this fantastic forum. I started doing SLD with their NHS Wales videos, but I stopped to avoid spreading the infection throughout my body. Perhaps I should order the DVD instead :-)

Thanks again for the amazing tips!

Hi,

My primary lymphedema appeared as a sudden swelling in my right leg when I was 42. I’m quite active as well as health conscious so I went to my doctor immediately. For the next few months it went back and forth between swelling and going back to normal. I went through specialists & tests with no answers.

Then I went to see a lymphedema specialist in Stanford (I live in the States). He did the

Stemmer test on my toe and felt my leg and concluded I didn’t have lymphedema.

My swelling did go away and my leg was more or less normal for 2-3 years. But then I noticed my right calf was slowly increasing in size.

I saw a specialist in Santa Monica who did a couple tests and said I had stage 0-1 lymphedema. She gave me a prescription for a LymphaPress and compression leggings, which I used for the last two years as well as doing MLD.

I closely followed the specialist treatment plan but even so my calf steadily got bigger & hardened. So, now I’m back at Stanford & waiting to get the liposuction for lymphedema (as well as doing MLD & bandaging).

Strangely, the swelling has not effected my foot since the initial first months & is just starting to effect my thigh. I have had random bouts of redness and pain that disappear on their own. Lymphedema seems to be different in different people; certainly, mine has confounded specialists.

Being a vocal advocate for yourself is important as well as keeping good records.

Doro9
Doro9 in reply to NievesAzules

Hi, NievesAzules!

Thank you so much for sharing your story. We seem to have a few things in common, as my lymphoedema affected my foot only temporarily.

I've now had a private appointment with a lymphoedema specialist and she gave me exactly the same advice as yourself--she warned me about doctors/nurses often shrugging things off and told me to be strong and insistent, if necessary.

I am curious about your liposuction procedure and would love to hear more about it. Also, do you do your own bandaging and how often? I have not had my legs bandaged yet but I can see myself getting very frustrated, as I'm not very skilful. All the videos I've seen involve a nurse applying the bandages, but not self-bandaging at all!

Best of luck with your procedure. Please let us know how it goes :-)

Hi,

Thank you for your response.

I kept wondering why I was not bandaged or shown how to bandage for the last 3 years. My local lymphedema clinic who had not recognized my lymphedema the first visit 8 years ago, just fitted me with compression thigh-high for my leg and gave me a Lymphapress. When I asked when I should schedule a follow-up for 6 months or a year the therapist said I would be fine without a follow up as long as I wore the stocking & used the pump.

Last year I could see that this treatment was not adequate. I was even paying out of pocket to see a MLD therapist twice a month. It took me a year to get to see the other specialist at Stanford, but once I did I got a referral to a different clinic where I have gone twice a week for the last month for MLD and bandaging. Now I am learning how to do it myself and it is difficult. I practiced last weekend and wrote down questions to take to my therapist this week.

Liposuction for lymphedema will remove the tissue that has built up in my leg over the past three years so to allow for better lymph flow. It’s not a cure but it should help turn back the clock a bit. And now that I have a better treatment plan I hopefully won’t find myself in this situation again.

(Also, I got a different pump- Flexitouch, which is more appropriate for primary and quite frankly, a better piece of equipment.)

I know I said it before but as a patient you need to educate yourself and ask for treatments. On my journey I had seen “world experts” in lymphedema so I thought they knew what was best for me. But lymphedema presents itself in different ways and each doctor and therapist has his or her own bias as to what the condition is and how it presents itself.

You sometimes have to help the doctor figure how to help you.

I’ll let you know how the surgery goes.

Doro9
Doro9 in reply to NievesAzules

Wow! What a journey, NievesAzules! I confess I had to Google what a lymphapress was... I'm learning so much thanks to this forum's kind members!

Thank you for your advice as well. I went to see a private therapist who told me to be strong and determined at the lymphoedema clinic, because no one knows myself better than I do. I feel that I'm doing well at the moment, trying to tick all the boxes. My first visit is next week. I hope to get my stockings, although I don't think I'll get bandaged -- I used to have skinny legs so they don't look too bad to people who never saw them before. I'll make sure I take a picture with me.

I am so glad that you are now on the right track, though! Please let us know how your liposuction goes. I am sure that you'll feel quite relieved once it takes place :-)

Thanks for all your help!

Sorry abut your Lymphedema. I have been on Chemo-Taxol weekly since July 2019. I was getting steroid infusions before the Chemo to lessen any possible side effects. Since I wasn’t getting any side effects, I was weaned from the Steroids & stopped them in November. Two weeks later, my legs started to swell. Three weeks later both legs, from feet to hips were gigantic and hard like tree trunks. I had difficulty walking & doing any kind of stretches. Oncologist said it was from Taxol, prescribed diuretics and put me back on steroids. I got compression hose from feet to high thigh. My legs got better, but still swell and hurt. I now see a lymphedema specialist to gives me drainage massages which help. I also do the massages at home. Since, I continue to swell, I was just fitted with leg pumps. I’m waiting for Medicare approval. I now wear the compression hose in the house and tight spandex exercise pants when I go out. My therapist calls this “drain & maintain.” The massage (or pump) drains & then the compression garments maintain the liquid back in body. I hope to get the leg pumps in 2 weeks. I’ll let you know how that goes. You wear them with feet elevated for 1 hour a day. I wore a trial one for about 30 minutes on my fatter leg & it helped. I also go to water and do stretches and then aerobics and and swim 2 to 3 times a week. The water gives me natural compression. My legs feel looser after being in the water. By the end of the day they start to grow again, but not like before. I hope this info helps.

Doro9
Doro9 in reply to syl70

Thanks for sharing your story, syl70. I am sorry you've had to suffer such an ordeal, although it looks like you got the right kind of treatment in the end!

I've read about how compression and drainage can help getting better. I have been trying to be quite strict with my self-massage routine. It should become as common as brushing my teeth! I'm quite disciplined, so I'm happy to do it every night.

I used to run quite a lot before my leg swelled, so stopping all of a sudden really had an impact on my mental health. Hopefully, I'll be able to do short runs once I get my compression stockings. Meanwhile, I am enjoying swimming (like yourself) and I have also discovered yoga. Not very good at either sport but at least they keep me busy.

Please, let us know how you get on with the pump. And thank you so much for your kind message. It is very helpful to read stories from real people; books and websites sound a bit impersonal sometimes.

Thanks :-)

NievesAzules
NievesAzules in reply to syl70

Hi Syl70,

I’m glad you got to a lymphedema therapist. It does make a difference as doctors & specialists usually don’t know what they’re looking at.

I’ve seen several lymphedema therapists both privately & through insurance over the years. It interests me the different approaches & even the different types of manual lymph drainage massage. I don’t really see that much of a difference with any of the types of MLD, but I definitely keep with it in case without it things get worse.

Before I started swelling I was doing CrossFit and jogging. I did change to water aerobics & swimming for 4 months, but I was bothered by the chlorine & saw no change in my leg. So, now I do cardio machine & weight training (a more moderate version of CrossFit) as well as yoga. I also hike once a week but interesting enough, my leg can start to get swollen and heavy when hiking...which seems to run counter to what should happen.

I also meditate and do Pranayama breathing and eat a rainbow diet (with no added sugar). Magnesium supplements help with nerve pain that I get sometimes.

I can’t say that any of the specifically helps my swelling but I want to keep the rest of me healthy and strong.

My new pump is Flexitouch which has sleeves for both my legs and abdomen and is supposedly more suited to primary lymphedema. I use it for an hour every night with my legs elevated. It’s early days but I’m hoping it will help.

syl70
syl70 in reply to NievesAzules

Hi All, it’s been a while since I posted. I appreciated all the comments. I used the leg pumps for one month & it helped with my lower legs, but hips and thighs continued to be swollen and hard. I finally got a different system including hip and leg pumps. What a difference. 6 months later, my thighs and lower legs are normal and my hips around the groin area are mildly swollen. I had lost a lot of leg strength and range of motion. My therapist recommended PT. That has helped tremendously. I have also returned to water exercises (not cardio) and swimming. I also get manual drainage. I use the pump on alternate days. I hope all of you with leg lymphedema continue to do well. I now have to figure out what I will do after the summer when I can’t swim outdoors. I won’t go to indoor pools, even when they open. Bless all of you who continue to live with lymphedema due to chemo.

You may also like...