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Primary LE in feet, legs and swollen stomach

I have been able to control my swollen toes feet and legs but now my stomach is really huge like I am carrying a huge football as I look 8 months pregnant.

Does anyone else have the same problem and what can i do to get rid of it.

I struggle to do exercises due to back problems and it hurts me to walk or stand too much.

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alfie19 I don't know about the stomach but I have lymphoedema in both legs although the left leg is the worst. In the past year I have lost two stone, I have at least another 6 and a half stone to lose, by healthy eating and although weight loss will not cure the problem it does lessen the pain and make it easier to walk. I also wear compression stockings on both legs.

Exercise is hard and like you I cannot stand or walk for long periods but I am determined that I am not going to lose my mobility so I try to do little and often. I take pain relief because without it I would find it impossible to walk anywhere. If I am out for the day I always have planned where I can sit down and give my legs a rest. I also have an exercise bike which I plan to start using on a regular basis.

Hope this has helped, good luck.

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I have an exercise bike it's good unfortunately I can only manage 2 to 3 mins as the pain increases and gets too much for me so do this twice a day on a good day on a bad day it is difficult for me to walk to the bathroom going on a veg and fish diet to see if this helps

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Is your exercise bike an upright one like mine? My therapist told me to use the one that is not upright as it puts less pressure on my knees. What is the veg and fish diet? Is it useful?

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Dear alfie19, can i suggest you get back in touch with your lymph specialist and see what can be done as it sounds like something has gone awry with the lymphatics in your trunk area? I completely understand how difficult you will be finding exercise at the moment try simple things like flexing your feet and circling your ankles, simple neck circles and shoulder rolls. Even these simple movements will help lymph movement. Also I think LSN have a leaflet on trunk lymphoedema. Good luck x

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I do these exercises daily but so exhausted and very tired

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Think you need to try to see your specialist if you can or get the LSN leaflet and see your GP, as there should be some help available but I know how hard it can be to find it.

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Where can I get the leaflet on trunk lymphoedema from?

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Contact LSN and they will send a leaflet out for you.

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Yes

I had the same problem but started following the SIBO diet and got down. But if I get out of it starts growing again

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What is the SIBO diet please I follow the Diet Now diet protein shakes and slowly lose weight but as soon as I start eating bread or potatoes or rice my stomach boats up again

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That’s right. And is because SIBO means Small intestines bacteria overgrowth. So bacteria multiply with carbs and sugar. That’s why you have to stay away from anything that turns into sugar. That’s the only way if you want to get better. Check for the ingredients in everything you eat or drink also. Sometimes you think you eating right but your not due to hidden ingredients. The best thing for you to do is eating clean.

Good luck 👍

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What type of food do you suggest please

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Mainly protein and veggies. The only fruit you can eat are berries

But you can find good recipes online

siboinfo.com/diet.html

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I have the same problems as Alfie19 - sciatica from spinal nerve damage, can hardly stand or walk more than 10yds, LD in both legs and now it seems to be spreading throughout all my body? Stomach is like a water balloon and I can't exercise!

Saw my LD nurse today to be measured for new stockings, and discussed my weight gain from a 12 to 22 within 3 years! She said to drink plenty of fluids during the a.m., but ease off them in the p.m. Try to cut out caffeine in tea and coffee (I don't drink nearly enough fluid!). Also to cut right down on carbs, but eat plenty of protein, fruit and veg.

Make the effort to get up and move as often as possible, and exercise when sitting - if only to move feet and ankles by 'peddalling' or doing circles. and waving arms about! Every little helps?

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Thank you hopalong for your reply at last there is someone who can relate to me now I don't feel so alone I was told the same as you which I do daily but I found drinking the amount of water suggested adds to the problem i swell up even more especially the stomach and going to tbe loo every 30mins i was tolx i could have tablets to stop weeing so much but we have to release the build of fluid i get so fed up taking tablets for so many different things its a no win situation so now i just go with the flow and do what I feel is right for my body and take tablets to ease the pain and multi vitamins and statios when I get very depressed I sit and cry sometimes it could be all day til I can find something to ease the depression like reading or drawing my family tell me to snap out of it they do not fully understand I let things get on top of me others say go for a brisk walk if only life was that simple been fighting this disease for over 50yrs and every year it gets harder cos we are not young or Fit as we would like to be whilst I am writi g this the tears are rolling down my face hope for a better day tomorrow

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Hello Alfie19.

How much have you been told to drink per day? I've been told at least one and a half litres, but I only have 2-3 cups of tea and a small glass of wine with dinner - all day! Even the stuff I DO drink is wrong! It seems to be a case of re-educating our entire diet, which makes it more difficult for us 'oldies'?

Are you able to get out and about at all?

Hope today is a better one?

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I drink 8 cups of earl grey tea with very little skimmed milk and 2 pts of water more if i can but i find if i drink less my stomach does not get bloated as much i am trying to re-educate myself to stick to fruit and veg but i can only manage to go out once a week on a good day as it takes it out of me and leaves me exhausted even when using mobility scooter so i have my food delivered its much easier

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Hi Alfie.

I was told that the caffeine in tea and coffee is the problem! Can you get caffeine-free Earl Grey?

Do you have a carer/family member or friend who can take you out - it seems you live alone? Is there a day centre that you can go to, to get you out to meet people, or maybe enrol in a class, volunteer for something,....?

Sorry for all the questions, but I think you may enjoy getting out of the house more often? I know I get stir-crazy if I can't get out every few days, even though I have a partner! Fortunately, even with all my problems, I can still drive, and look forward to going to the supermarket where they have a mobility scooter I can use. I'm hoping to buy one for myself before too long, but have to pay for my car at present. 😊

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Hi Alfie 19, I have the same problem with my stomach been like I'm pregnant for over 2 year now and still can't find out wat it is, I also have bilateral full leg lymphoedema.

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It is a nightmare trying to find a way of losing the weight and reducing the smotach I find It difficult to exercise or even to go swimming I found that deep breathing and mediation helps the mind to unwind so then I can deal with LE issues and sciatica I use indoor portable bike for cycling so in the summer it can be used outside

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My son has primary lymphedema of legs, feet, scrotum, penis, and trunk. He also has lymphatic fluid in chylous pleural effusions. A genetic profile was done and a gene mutation was found. He is now on a trial of a drug that blocks the gene and after 9 months on the drug is doing so much better, but lower legs and feet still swollen. I can't give too many details because it is experimental, but he is being treated at the Lymphatic Imaging and Intervention Center in Philadelphia. He's young, and I'm hopeful for a brighter future, but thinking he might need an LVA surgery. Have any of you had this surgery done in the states? If so, where? And did insurance cover it?

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So sorry to hear about your son. I have primary lymphedema in both legs. I am having the LVA surgery at John Hopkins in Baltimore, MD soon. My insurance is covering procedure. You can contact John Hopkins Reconstructive and Plastic Surgery for more info or consultation.

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Wow thank you. I actually reached out to them about a possible LVA but haven't seen them yet. Is your procedure going to outpatient or inpatient? I'd love to talk to you about it sometime. I would love for my son to be able to ski or play soccer again some day. Will you please let me know more about the procedure? I can give you my email or phone if you don't want to give details here in this format.

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Hi It is an outpatient procedure. I will let you know how things go.

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What causes the small warts on our legs due to primary LE

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Me too. I tend to wear maternity style clothing to disguise the bump but I’ve not found a solution to the problems we seem to share.

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Loose clothing is always more comfortable in the summer i wear a lot of kaftans as sometimes i can not bear clothes next to my skin especially at night.

I have done a lot of research to find a solution and I found doing what is right for you the best answer I listen to my body alot it tells me when I Need to rest I try and push myself to do more walking but then up with more problems and it sets me back a few days so pacing yourself is very important. Accepting what we can and can not do instead of fighting back and finding a new way of doing things is a challenge and makes me feel better in myself there are few days i get very low so trying to deal with this at the moment hopefully it will only last a few days.

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