Physical work and primary lymphedema

[Kerrazy]

Hey there!

I stumbled across this forum, in search of some answers.

I am a 45 year old male dealing with PL since I was about 15 or so. When I was diagnosed I was never offered solutions, only a diagnosis. Then at about age 27 -28 I found out about MLD and it worked wonders, yet was still not aware of compression garments.

Around 10-11 years ago I found out about compression garments, after a snowmobile roll over and my hand near exploded with fluid build up.

Both feet have always been affected, since age 15/16 and my right hand since age 30 I suspect.

The last couple of years, it has gotten worst during the summer months and I have just recently put together what is happening.

2 springs ago, I was finishing a big renovation ( I am a contractor) and when I was done.... Well I was done literally. My body was a wreck. Too many energy drinks, I assumed as I seemed to have really crashed.

Well after a few days I was still really lethargic, and after a few weeks I finally spoke to my wife thinking I was suffering from some form of depression. Work was on hold as I could not even get out of bed. I would get up in the morning,sort out our kids and them climb back into bed.

Saw my GP and of course they relied on the info I provided and put me on anti- depressants. Sort of worked but not really. Still hit and miss. Could work for a couple of days physically then be wiped out for 2 days. Hmmm ok back to blood work. Oh my testosterone levels are down. Ok try that.

So winter comes all is betterish. Carry-on.

This year same thing, then finally this week I think I have sorted out the problem.

I believe, I am now have the lymph fluid backing up in my stomach or intestines.

When I crash, as I call it, I have ridiculous bouts of diahrrea for a couple of days. Completely fatigued and constantly on the toilet. These crashes happen after a huge physical exertion for a day or 2.

Heading to the GP today and I hope I can get some answers or at least pointed in the right direction.

Any other folks have similar findings?

Thanks for taking time to read my post.

[naominorthenellis]

The very best thing you can do is to keep you diet clean with lots of fresh fruit and vegetables, pulses and good quality meat; no energy drinks or diet foods; no supermarket bread, if possible prepare all of your meals from scratch (organic produce where possible); so that you know exactly what is in the food you are eating. Also cut out sugar - you will be amazed with these changes at how your mood and energy levels lift without toxins in your diet - no more crashes! With good compression you should also exercise if you can - everyone says the same thing; but swimming and pool based exercises are very good. Good luck. NNE

[Kerrazy in reply to naominorthenellis]

NNE,

Thank you for taking time to respond.

While I am fit 6' 1" 175 lbs. I do have a nasty sweet tooth and of course to add to this, I am a smoker.

I know, I know, I know QUIT SMOKING. really not so easy.

As I am in construction, I am constantly subjected to different forms of toxins, drywall dust, saw dust, paints and finishing materials and of course the materials used for cleaning such materials.

Anyhow, as I get older I realize what I need to do. And as much as I am regretting it, as I am a meat and potatoes guy, I really need to look at seriously changing my diet and adding those silly green things ladies consume. ( I am making a foolish sexist remark, all in an effort to be funny).

My concern is not getting enough energy from changing my diet to get through the day.

I am somewhat old school, in regards to eating smart and ultimately this old dog needs to learn some new tricks real fast.

I also find it frustrating that there are not many men in my situation. It would be great to have an ally who understands the discomfort when doing day to day physical work.

I find even my wife does not appreciate the discomfort, and this just offers more challenges in my world.

Thanks for letting me rant.

Kerrazy

[naominorthenellis in reply to Kerrazy]

rant away - we all need to do that. All addictions are hard to kick; be it sugar or nicotine or alcohol. Lymphoedema is tough for people to understand. But seriously; clean eating will make such a massive difference - i also have a sweet tooth, so something delicious from time to time isn't going to harm in the long term; it is kicking it on a daily basis that is important and not using sweet snacks as a crutch for an energy boost . Green things are delicious!! Juicing also a great way to get your 'greens' down; add a lemon and a green apple to the mix to make it sweeter.

over and out! NNE

[Hidden]

Hi, I am by know means an expert but your stress levels seem to be high, which is understandable. The toilet problems could be IBS (irritable bowel syndrome) which are always made worse by stress. I came across this quote the other day "alcohol turns to sugar - sugar turns to bacteria. So the sugar you have been taking in your energy drinks won't have helped. Also my hubby who has also worked on construction sites and building trade and used high energy drinks, now has serious heart problems because they are full of caffeine not to mention other chemicals. There are lots of articles on the internet on the benefits of drinking water which relieves tiredness. You are lucky that you can have MLD. In addition to compression garments there is also 'taping'. You can be taught to do the taping yourself and unlike compression garments that you remove at night, taping is on 24/7. In simple terms taping channels the fluid away from built up areas, moves with you. At all times you should consults your health care professional. I hope this helps a little. LSN have lots of leaflets that you can read lots of them online.

[LymphSuppNetwork Partner LSN]

Hi Kerrazy some people with primary lymphoedema do find it affects their intestines and manage it by following the RAD diet. there is a link to it here

lipomadoc.org/blog/rad-diet

hope it helps

[Andy13]

Hi Kerrazy,

I don't quite match your profile but I am male, late fifties, diagnosed with primary lymphodema when I was 16 and have it in both legs (one more so than the other) and some swelling in one hand.

I am an office worker but do take regular vigorous exercise. I do sometimes suffer from lack of energy but that's usually a short term issue related to plain hunger!

Over the years my diet has evolved to be pretty healthy. I don't go a bundle on lettuce leaves and celery but do eat a reasonable about of vegetables and salad. Appreciate diet can be a challenge on a construction site, man food is usually high protein and high carbs but watch out, high carbs can lead to energy crashes as your body shunts the excess into storage and over does the storage leading to low blood sugar. That's the usual cause of the 'hunger' I mentioned above. The irony is that overeating, particularly over eating carbs, can lower your energy levels and make you hungry. Foods which burn more slowly, usually because they are slightly harder to digest, can help you literally balance your energy input better.

As regards your digestive problems, I haven't experienced those problems. The lymphatic system is closely linked to fat absorption in the gut so you might want to think about lowering your fat intake to avoid overloading it.

Hope that helps.

Andy

[gavinlwright]

Hi Kerrazy

I sympathise with you. Whilst all the advice on diet is good it is also a mindset you need to get. I was once a smoker and it was only when I decided I was going to give up that I was able to do it. I had tried several times to appease other people but never really wanted to, when I decided I wanted to I found it easier. It is the same for diet and exercise. I have recently started going to the gym again after a layoff for 18mths or so. I kept telling myself I needed to go but couldn't get motivated until I thought about it more and decided I was only fooling myself with all the excuses. Unfortunately I have had to leave it for two weeks because of an ear infection which caused temporary deafness and a slipped disc.

Whichever way you choose to go with diet I am sure you will find a way that works for you, remember why you are doing it and that you are not the only one suffering. I get tired a lot at the moment but this is partly down to stress with a new business proposition and money.

Keep busy and remember to set achievable targets. When you feel like going back to bed set yourself 4 things to do in the day this could be reading, getting the kids to school, cooking dinner, washing the car. Anything but by setting four tasks each day and doing them you can quickly get into a routine and start to feel as though you are getting things done and achieving something. It works for me.

Good Luck

[craftinglady]

Hi, Your post is very interesting, If you can be lucky with Lymphedema for me it is because i am retired. Ifi have a bad night i have a easy day and on the good ons i try to catch up. I think you have to listen to your body and if you can work things out all the better.

If i drink wine i get bad cramp that night--Big roast dinners make me feel sick so i have a small plate and devide it up -cover-fridge for the next day. People dish up far too much food.

I am trying to loose some weight as my kneese will play me up most days ,

I hope your relations support you , mine are great and i try not to mention it all the time.