What is happening in my body?! Lymphedema spreading + Lympha Press

[ulverin]

I have had lymphedema in my both legs. This week I got the Lympha Press machine in my home to try it. It has worked great on my legs and softened the swelling. However, my left arm now seems to react! I have suspected for some time that it may be developing lymphedema, I've had some very mild symptoms, but not bad so I've decided I'll just watch how it'll go. Now I think the symptoms have become noticable, tightness, tingling, when I press the arm it leaves a mark, it's not my imagination.

This is probably not very likely to happen?..!

I was supposed to possibly be a candidate for surgery (for legs) but it seemed on my last visit to surgeons I'm not - they transfered me to a different hospital next cause my case seems atypical. It's so tiring and I probably should tell my doctors about the arm and everything but I think I'll just wait until I get to the next place and let them see what's wrong. Maybe I have a genetic disposition to primary lymphedema and it's manifesting now increasingly rapidly. I don't know if I should stop using the machine, but it helps with my legs and I can finally walk so I really don't feel like quitting it!

I also have a "full" feeling in my abdomen, especially in the morning. I think the fluid tends to build up inside my stomach during the night.

Stress is bad for you, but hard to avoid with this weird condition.

Do you have any opinions of my situation?

[Lynora]

Have you been shown how to do abdominal massage while you are wearing the device??? It is essential. If the manufacturers or device provider have not shown you, please look for Self Lymphatic Drainage of Abdomen on YouTube.

[ulverin in reply to Lynora]

I haven't been shown, but I've done something like that to myself before I do the treatment - massage my stomach and then "open up" the nodes in my chest and armpits.

[Lynora in reply to ulverin]

If you notice any additional swelling in your genitals or over the pubic bone, contact the provider - the compression setting may be too high. How often are you using it?

Do the abdominal massage whilst you are wearing/using the device. I know some images show 'models' reading books or watching TV - but this is not real life - you have to help by clearing lymphatic vessels in the upper body.

[CCT67]

Like Lynora said, you need to train your trunk before you start the pump on your legs. Truncal drainage includes abdominal lymphatic breathing which is a specific type of breath work, and clearing your nodes around your neck/clavicle and armpits. Truncal drainage is also necessary again after you finish the leg cycle on the pump. Even better to it during the pump cycle, in additional to before and after. Withou truncal drainage all of the lymph from your legs builds up in your trunk, trapped, hence your being very bloated

[Discoverlife]

Not sure if it helps but you might want to look at google.lu/amp/s/staylymphie...

[ea238]

Hi, I had a similar experience with MLD. I have lymphedema in my left leg. When the fluid moves it moved into my abdomen and breast. Really weird. Went to the GP and even had a mammogram as I was convinced I had breast cancer.

It did move from the breast and abdomen. So now when I have they drain these areas lots too.

May be worth massaging the lymph node in your neck and armpit when you have machine on to encourage fluid to drain away ??

[Lynora in reply to ea238]

ea238 - when you first had MLD did the therapist start at your neck? If not - where did the therapist train?

[ea238]

Hi, Yes they did start at the neck. However I think the amount of fluid that was moved in the first few sessions was too much for my body to process. I could actually feel it move when she massaged. I also had new stockings. So perhaps both moved the fluid. It has never worked as well since which is a shame as my leg is huge at the moment,. Being taught bandaging in 2 weeks. x

[Lynora]

Were you taught how to do deep abdominal breathing? If not - this can be really helpful to relieve the bloated sensation.

[Hidden in reply to Lynora]

I developed Lymphoedema about 3yrs ago in both legs, so was unable to get my shoes on, (going out in Slippers), but have suffered with swelling around my ankles for years. I developed fluid-filled blisters on my left leg only, requiring Antibiotics, which haven't returned, but skin has never looked the same, (have to use an emollient to prevent my skin getting an infection). Just had my 5th Op on my left Club Foot, as I could no longer get any support from my Orthotic Shoes, (need a Fischer Stick to get about, which causes it's own problems - namely pain in hands/elbows), plus couldn't even wear Slippers!

I am currently in a non-weight bearing Plaster Cast, which gets very uncomfortable by the end of the day, due to swelling, (can see my toes are puffy, so stands to reason leg swollen too. Can feel the plaster rubbing around my ankle, worried about blisters developing, especially as have Type 2 Diabetes). Just 8 more days until Plaster comes off and Boot fitted - can't wait as it will have been 6 wks, of which 5 of them have been Flat-bound, whereby I have been unable to get out, (apart from Hospital Appointments, when an Ambulance Crew have to lift me up/down stairs, as I live in a First-floor Flat. I am unable to use crutches due to Arthritis, Fibromyalgia and chronic pain/weakness in my hands/elbows, so use a Walker).

Anyway, I was given Compression Stockings to wear, which were extremely uncomfortable and made my legs throb after an hour or so, until I eventually gave up on them, (even went to the Gym to try to control the swelling, using sit-down bikes and a vibrating disc, but nothing seemed to have any effect.). In the meantime I inherited my Mum's Sofa with elevated foot rests after she had a Riser/Recliner Chair. Miraculously, my swelling went away and the Lymph Clinic were so happy they said I didn't need to go back, unless I developed problems again.

My Lymphoedema was under control until Spring 2018 when I stayed with my Sister and Mum, following her having a fall, being hospitalised, and returning home to a hospital bed in the front room. Because I spent 14 dys with my legs down, my Lymphoedema came back with a vengeance and I couldn't get my shoes on again! Fortunately, after elevation the swelling went down again and has been under control ever since, (apart from the suspected swelling of my left leg under my Plaster).

My reason for this post is that I was never told about Lymphatic Abdominal Breathing, nor about clearing the Nodes around my Neck/Clavicle! I do get bloating in my stomach, which I have complained to my GP about several times over the years, but no explanation was ever given and the pain in the back of my neck, was attributed to Arthritis!

I think Medical Personnel suffer from 'Tunnel Vision' - the ability to only focus on one condition at a time, thereby failing to spot the link to other existing conditions!

[CharoFricom]

Hello Ulverin

I understand completely

I get really overwhelmed with this condition because I would like to wear some normal clothes and I can't. I have to wear everything loose because I know I'll be swelling and need room.

Even the shoes I have to buy bigger. I have lymphedema in both legs but the left is worse.

Now it went in my upper abdomen and also swells up like a balloon 🎈

What is that machine that you said you got ? Never heard of it

[MARILYNFJ]

Breathing exercises (google them) and MLD (manual lymph drainage you do yourself) could be helping.