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Undiagnosed chronic edema/water retention
I'm just going to take a shot in the dark here and hope that someone here has heard of similar condition.
I'm 45 year old male who has been dealing with chronic generalized pitting edema most notable in the lower legs. I also have some concurrent gi issues going on but am more concerned about the edema.
I've been checked for heart, liver, kidney issues as well as diabetes, thyroid and several other conditions that might explain the edema but nothing comes back abnormal. I'm not taking any meds and prior to the edema was lean person. These days, my abdomen looks very distended and I am puffy all over. I feel pretty lousy in general and exhausted most day. Some muscle/weakness aches, as well
Anyone ever hear of anything remotely similar? I think it's really bizarre that none of the docs know why this is happening to me
I'm 45 year old male who has been dealing with chronic generalized pitting edema most notable in the lower legs. I also have some concurrent gi issues going on but am more concerned about the edema.
I've been checked for heart, liver, kidney issues as well as diabetes, thyroid and several other conditions that might explain the edema but nothing comes back abnormal. I'm not taking any meds and prior to the edema was lean person. These days, my abdomen looks very distended and I am puffy all over. I feel pretty lousy in general and exhausted most day. Some muscle/weakness aches, as well
Anyone ever hear of anything remotely similar? I think it's really bizarre that none of the docs know why this is happening to me
Thanks for the response, Niko. Actually, the description does sound very similar to my own issue. I just with I could get a proper diagnosis, so that I know what I'm dealing with. I'm a bit leery of alternative docs.
I lost a detailed post I had just typed. :(
Systemic unchecked chronic inflammation causing connective tissue damage and intestinal permeability which has resulted in Gut Dysbiosis.
A double edged sword, where edema is the main presentation
(besides G/I issues), however, the risk of developing autoimmune or chronic conditions is imminent.
A PEG urine to test for intestinal permeability is necessary.
Additional testing may have to be considered later, as well.
Diagnosing intestinal permeability is the easy part. Correcting it,
however, is much more challenging and it takes considerable time to correct.
I would seek a good Functional Medicine, Holistic or Naturopathic Doctor,
to facilitate this for you.
Conventional medicine unfortunately has a rather dismal record, when cases, such as yours, do not get resolved timely.
If you decide to have the PEG test, please let me know the result.
Cheers,
Niko
Systemic unchecked chronic inflammation causing connective tissue damage and intestinal permeability which has resulted in Gut Dysbiosis.
A double edged sword, where edema is the main presentation
(besides G/I issues), however, the risk of developing autoimmune or chronic conditions is imminent.
A PEG urine to test for intestinal permeability is necessary.
Additional testing may have to be considered later, as well.
Diagnosing intestinal permeability is the easy part. Correcting it,
however, is much more challenging and it takes considerable time to correct.
I would seek a good Functional Medicine, Holistic or Naturopathic Doctor,
to facilitate this for you.
Conventional medicine unfortunately has a rather dismal record, when cases, such as yours, do not get resolved timely.
If you decide to have the PEG test, please let me know the result.
Cheers,
Niko
Thanks for the detailed response, jemma. Much appreciated. I actually already do most of the stuff you recommend but there are a few things on there that I haven't considered yet. My heart, liver and kidneys were checked already, which is why my docs are stumped regarding the edema. I've had the edema quite awhile, though, and I think I would have either died or grown seriously ill by now if it were an organ issue, but there's always a chance they could have missed something, I guess. I'm having another follow up appt with gastro next week and see what he says
I trust that you are now managing your gastric problems with medications that are working for you.
Eat small quantities of food, little and often and don't eat anything for a couple of hours before going to bed. What can happen is the food and gastric juices can come up into your oesophagus when you are sleeping.
If you are OK with yogurt, eat natural plain yogurt to help build up the good flora in your guts.
Cut out all fried and fatty foods. Boil, grill, steam or roast. Choose lean cuts of meat. Keep a written record of any fruit and veg that may give you a problem and avoid those that do.
As your pitting oedema may having something to do with your diet, cut out all sugary, junk and processed foods. Cut out fizzy drinks, cut down your consumption of tea and coffee. You may be fine with green tea and herbal ones.
Reduce the amount of salt that you consume. Don't add any salt to cooking your veg. Processed and ready made meals contain lots of salt and can also contain too much sugar, so avoid those.
Limit your consumption of alcohol. Drink more water - 2 litres a day is usually recommended, more if you sweat a lot or follow the advice given to you by your doctor or urologist.
Do not think that cutting back on your fluids will reduce the amount of fluid retention - it won't.
Still do some form of exercise, walking, swimming. If you have not done any for a while, start of slowly and for a short distance and built it up gradually.
When resting and watching the TV elevate your lets.
As your doctor to refer you to a dietician.
Avoid any foods that aggravate your condition or make it worse. So do keep a list of those so that you remember which ones to avoid.
Once you start a healthy and balanced eating plan and avoid all the sugary, processed and junk foods and the fizzy drinks, you will probably find that it will help with the pitting oedema and you may lose weight and will also start to feel better. Keep a food and drink diary.
Your doctor can prescribe a diuretic to help drain away the excess fluid.
Have you had your heart checked out? Fluid retention can be caused by kidney and heart problems as well as hormonal issues and eating the wrong foods. A different type of diuretic is prescribed to those people who have a heart problem than to those who don't.
Eat small quantities of food, little and often and don't eat anything for a couple of hours before going to bed. What can happen is the food and gastric juices can come up into your oesophagus when you are sleeping.
If you are OK with yogurt, eat natural plain yogurt to help build up the good flora in your guts.
Cut out all fried and fatty foods. Boil, grill, steam or roast. Choose lean cuts of meat. Keep a written record of any fruit and veg that may give you a problem and avoid those that do.
As your pitting oedema may having something to do with your diet, cut out all sugary, junk and processed foods. Cut out fizzy drinks, cut down your consumption of tea and coffee. You may be fine with green tea and herbal ones.
Reduce the amount of salt that you consume. Don't add any salt to cooking your veg. Processed and ready made meals contain lots of salt and can also contain too much sugar, so avoid those.
Limit your consumption of alcohol. Drink more water - 2 litres a day is usually recommended, more if you sweat a lot or follow the advice given to you by your doctor or urologist.
Do not think that cutting back on your fluids will reduce the amount of fluid retention - it won't.
Still do some form of exercise, walking, swimming. If you have not done any for a while, start of slowly and for a short distance and built it up gradually.
When resting and watching the TV elevate your lets.
As your doctor to refer you to a dietician.
Avoid any foods that aggravate your condition or make it worse. So do keep a list of those so that you remember which ones to avoid.
Once you start a healthy and balanced eating plan and avoid all the sugary, processed and junk foods and the fizzy drinks, you will probably find that it will help with the pitting oedema and you may lose weight and will also start to feel better. Keep a food and drink diary.
Your doctor can prescribe a diuretic to help drain away the excess fluid.
Have you had your heart checked out? Fluid retention can be caused by kidney and heart problems as well as hormonal issues and eating the wrong foods. A different type of diuretic is prescribed to those people who have a heart problem than to those who don't.
Thanks for the lengthy explanation, Ger. I truly appreciate it. Unfortunately, I don't think I fit that description at all, although I will mention to my doc, just in case.
My edema is not lymph related or at least that's what my docs tell me. I've actually looked up some pics of the lymphedema and it looks very different from mine. It's much less uniform and more lumpy in appearance. I just look swollen and the fluid is uniform throughout and could easily be mistaken for normal weight gain if someone didn't know I was carrying fluid
I've also been dealing with it for quite awhile now and there's no real long term changes for better or worse that I can see.
Someone in another forum mentioned that I might have a systemic inflammatory reaction second to my gi issues (recent endoscopy showed erosive gastritis and inflamed patch of colon) and to be honest that's exactly what it feels like. When the gi stuff is raging, the edema is severe. Both symptoms occur together and on the rare days when I feel a bit of improvement, both the edema and gi issues settle down simultaneously. I've never experienced an instance when the stomach is tender and distended and yet the edema improves or vise verse.
Still not sure of an underlying casues, though
My edema is not lymph related or at least that's what my docs tell me. I've actually looked up some pics of the lymphedema and it looks very different from mine. It's much less uniform and more lumpy in appearance. I just look swollen and the fluid is uniform throughout and could easily be mistaken for normal weight gain if someone didn't know I was carrying fluid
I've also been dealing with it for quite awhile now and there's no real long term changes for better or worse that I can see.
Someone in another forum mentioned that I might have a systemic inflammatory reaction second to my gi issues (recent endoscopy showed erosive gastritis and inflamed patch of colon) and to be honest that's exactly what it feels like. When the gi stuff is raging, the edema is severe. Both symptoms occur together and on the rare days when I feel a bit of improvement, both the edema and gi issues settle down simultaneously. I've never experienced an instance when the stomach is tender and distended and yet the edema improves or vise verse.
Still not sure of an underlying casues, though
I am not an expert and I do not say that you have lymphedema but I do know that lymphedema has different stages. In stage 1 the tissue is still at the pitting stage.
Stage 0 (latent): The lymphatic vessels have sustained some damage which is not yet apparent. Transport capacity is still sufficient for the amount of lymph being removed. Lymphedema is not present.
Stage 1 (spontaneously reversible): Tissue is still at the pitting stage: when pressed by the fingertips, the affected area indents, and reverses with elevation. Usually upon waking in the morning, the limb or affected area is normal or almost normal in size.
Stage 2 (spontaneously irreversible): The tissue now has a spongy consistency and is considered non-pitting: when pressed by the fingertips, the affected area bounces back without indentation. Fibrosis found in stage 2 lymphedema marks the beginning of the hardening of the limbs and increasing size.
Stage 3 (lymphostatic elephantiasis): At this stage, the swelling is irreversible and usually the limb(s) or affected area is very large. The tissue is hard (fibrotic) and unresponsive; some patients consider undergoing reconstructive surgery, called "debulking". This remains controversial, however, since the risks may outweigh the benefits, and the further damage done to the lymphatic system may in fact make the lymphedema worse.
Stage 0 (latent): The lymphatic vessels have sustained some damage which is not yet apparent. Transport capacity is still sufficient for the amount of lymph being removed. Lymphedema is not present.
Stage 1 (spontaneously reversible): Tissue is still at the pitting stage: when pressed by the fingertips, the affected area indents, and reverses with elevation. Usually upon waking in the morning, the limb or affected area is normal or almost normal in size.
Stage 2 (spontaneously irreversible): The tissue now has a spongy consistency and is considered non-pitting: when pressed by the fingertips, the affected area bounces back without indentation. Fibrosis found in stage 2 lymphedema marks the beginning of the hardening of the limbs and increasing size.
Stage 3 (lymphostatic elephantiasis): At this stage, the swelling is irreversible and usually the limb(s) or affected area is very large. The tissue is hard (fibrotic) and unresponsive; some patients consider undergoing reconstructive surgery, called "debulking". This remains controversial, however, since the risks may outweigh the benefits, and the further damage done to the lymphatic system may in fact make the lymphedema worse.
Yes. They're out of ideas, it seems. If it's not heart, liver or kidney failure, they're pretty much out of ideas at that point. This has been going on for awhile too, so it's really frustrating.
I think the lymphedema is non pitting. Mine leaves indents. The other strange thing is that the edema is all over the place. I can feel in in my arms, chest, back of my neck, etc but it's most visible in my legs because you can press on them and see it. If someone who knew me hadn't seen me in awhile and didn't know that I was carrying water, they might think I just put on some extra weight. It looks like weight/fat
I think the lymphedema is non pitting. Mine leaves indents. The other strange thing is that the edema is all over the place. I can feel in in my arms, chest, back of my neck, etc but it's most visible in my legs because you can press on them and see it. If someone who knew me hadn't seen me in awhile and didn't know that I was carrying water, they might think I just put on some extra weight. It looks like weight/fat
One cause that comes to my mind is lymphedema. I have seen this from very close and it looks very much like you described.
I however can hardly imagine that your doctors did not consider that.
I however can hardly imagine that your doctors did not consider that.
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