Swelling all over body, edema, oedema, water retention 27 months. Please, help!

[[Cu...]]

 

Finally I decide to write here. Hi!
Sorry for my english. I'm not good in it.

I'a 27 months off phenazepam after 9 years almost c/t. And 5-6 times in months xanax. Like many here, I had a strong benzobelly (looked more than 9 months pregnant but it's gone. At the 3rd month w/d start to swell suddenly and in 3 months I swelled by 26,5lbs (1/4 of my weight) weit of water.
Whole body and face - from head to toe - is a massive swelling. My face looks like a perfect circle.

I did all analizes including aldosterone, ACTH, prolactin, cortisol, thyroid gland, protein, a complete biochemical blood test - everything is normal. Ultrasound of the abdominal cavity, ECG too.

I visited 5 therapists, a gastroenterologist, nephrologist, endocrinologist, 2 urologists, psychiatrists and psychotherapist (total 15 doctors) - no one found the cause. The only thing that clear - a delayed reaction to food (maybe food intolerance). I swell after 2-5 hours a day by 200-1100ml daily. I take diuretics veroshpiron, torasemide, hydrochlorothiazide, indapamide alternating, having agreed with the nephrologist.

Most of my doctors agree that it is w/d, but don't know what to do. They diagnosed me with "edematous syndrome of unknown origin, unspecified metabolic syndrome". 

I have almost no fat, I'm very skinny. But the edema is huge and from the side it seems I am fat, but when pressed, the edema is pushed to the bone. When I bend over, my bones stick out, so I'm very skinny. No fat, just water and bones...

I can't walk!! My spine is deformed with edema and I can't straighten up, I feel VERY bad because of fluid retention.

My w/d symptoms are 95% gone but swelling remains. My breasts are 5 sizes swollen and I can't sit up because it's heavy. Thighs literally bursts when sitting because water inside, and I became an invalid person phisically, chained to the house. I have terrible dyspnea even when I brush my teeth. I can’t walk even 50 meters.
Body is huge and heavy, as if tied with cotton wool soaked in water. Or I have a big backpack tied to my chest and legs and I can't take it off 24/7. I am very heavy.

Movement does not help.

My brain feels great, no anxiety, no electric shocks and so on. I am the same as before. I can eat any food without constipation/diarrhea and bloating afterwards, but the fluid retention still here.

The only analysis that gave a result - a 3-component food intolerance test - revealed milk intolerance. But for potatoes it showed very few IgG4 - although it swells me. 

I tried suprastin, loratadine, lymphomyosot, chestnut fruit extract, enzymes and probiotics in high doses - nothing helped. I have been fighting and looking for a way out for two years. My diet is extremely healthy now, lots of fresh vegetables, but nothing helps.

I swell even from what has no carbs - raspberries, currants, all fruits, coconut milk ... Sometimes there is swelling or not whith the same foods.

The edema itself does't hurts and does't have an inflammatory nature, it's symmetrical, more like allergic - swelling of adipose tissue - it seems to be saturated with water. Swelling grows absorbing all the water I drink.

I don't eat more than 2-3 grams of salt per day. I drink a lot of water / little water - it does not help. 

Absolutely - it is caused with GUT. But I can't stand the keto diet. I feel very bad of it - tryed it with 6 months - this diet does't fit to me. I use an elimination diet it helps to identify food allergens.

Doctors tell me necessary to stop the edematous syndrome as soon as possible, because it destroys the  cardiovascular system and bones.

Please help me...

Links to benzobuddies topics with similar s/x:

https://benzobuddies.org/topic/212774-water-retentionswellingplease-help/
https://benzobuddies.org/topic/250534-how-long-did-you-benzo-belly-last/
https://benzobuddies.org/topic/14333-benzo-free-and-swelling-up/
https://benzobuddies.org/topic/97956-weight-gain-amp-edema/
https://benzobuddies.org/topic/197920-water-retention/
https://benzobuddies.org/topic/266758-benzo-body-help/
https://benzobuddies.org/topic/74462-water-retention-all-over-the-body-more-than-benzobelly/
https://benzobuddies.org/topic/251312-water-retention/
https://benzobuddies.org/topic/56612-swelling-all-over-the-body/
https://benzobuddies.org/topic/215271-water-retention-and-swellinganyone/
https://benzobuddies.org/topic/181705-suffering-with-fluid-retention/
https://benzobuddies.org/topic/200991-water-weight128555/
https://benzobuddies.org/topic/169334-full-body-bloat/
https://benzobuddies.org/topic/188198-swollen-fingersfluid-retention/
https://benzobuddies.org/topic/214431-swollen-arms/
https://benzobuddies.org/topic/172743-retaining-fluid-anyone-else/
https://benzobuddies.org/topic/227066-benzo-induced-swelling/
https://benzobuddies.org/topic/19189-puffy-legs-weird-symptom/
https://benzobuddies.org/topic/235068-benzo-belly-and-face-swelling/
https://benzobuddies.org/topic/212774-water-retentionswellingplease-help/
https://benzobuddies.org/topic/155692-leg-swelling-please-read/
https://benzobuddies.org/topic/133506-8-months-outswollen-fingers-and-ankles/
https://benzobuddies.org/topic/68471-anyone-retaining-fluid-swollen-ankles-etc/
https://benzobuddies.org/topic/222437-heart-and-vascular-system-effects/
https://benzobuddies.org/topic/64596-severe-swelling-in-legs-and-feet/
https://benzobuddies.org/topic/22657-re-swollen-joints-and-pain-benzo-withdrawals/
https://benzobuddies.org/topic/74995-feet-issues/

https://benzobuddies.org/topic/241292-fluid-retention

Upd: I will update these links as I find new ones.

Thanks for reading

Edited September 22, 2023 by [Cu...]

[[or...]]

I just read your post and I am so new at the taper thing, I didn't CT, I wouldn't know where to start to help you except just tell you that you must be very strong to have gone through all you have already.  I am glad you are posting on BB as I know you will get help from those much more experienced than I am.  I can encourage you with know about a lot of people here that have come through overwhelming wd sxs, and they are doing very well.

Are you saying the links you posted are ones you have found and read already?  I know you just posted this about an hour ago so I'm assuming you haven't found much yet to help you through this, so hang on and stay on BB as there are people in different parts of the world, and timezones so they are on all throughout a day.  I will follow your thread and see if there are more replies for you, and help.  Big hugs, and encouragement, I'll be around.  By the way, I just have 5 months of a taper behind me, and I took Clonazapam for 35 years.  I am also 70 now so I am doing a very slow taper.  I have a few much milder wd sxs, that's all the experience I have, but lots of people are in similar situations as you are and will be around.

Keep looking around and other posts to see if you can find threads where you might be able to find some answers, it's a wonderful site, and I feel it's saving my life, Denise

[[Ma...]]

I have no clue what happens with these benzo stuff I gained 60 pounds of fat only on my belly and Thighs and it’s not water retention but all my labworks are perfect 

 

these drugs destroyed all I have I have severe dystonia too 

[[Cu...]]

On 10/08/2023 at 21:54, [[o...] said:

I just read your post and I am so new at the taper thing, I didn't CT, I wouldn't know where to start to help you except just tell you that you must be very strong to have gone through all you have already.  I am glad you are posting on BB as I know you will get help from those much more experienced than I am.  I can encourage you with know about a lot of people here that have come through overwhelming wd sxs, and they are doing very well.

Are you saying the links you posted are ones you have found and read already?  I know you just posted this about an hour ago so I'm assuming you haven't found much yet to help you through this, so hang on and stay on BB as there are people in different parts of the world, and timezones so they are on all throughout a day.  I will follow your thread and see if there are more replies for you, and help.  Big hugs, and encouragement, I'll be around.  By the way, I just have 5 months of a taper behind me, and I took Clonazapam for 35 years.  I am also 70 now so I am doing a very slow taper.  I have a few much milder wd sxs, that's all the experience I have, but lots of people are in similar situations as you are and will be around.

Keep looking around and other posts to see if you can find threads where you might be able to find some answers, it's a wonderful site, and I feel it's saving my life, Denise

Hi! Thanks for the answer and support! Yes, I have read these links already for many times.

35 years is a very long time. Almost my entire life!) (I'm 37) I wish you much luck, strength and health on this difficult path!

It's hard for me to reply to messages right away, even in my native language....

[[Cu...]]

On 11/08/2023 at 00:17, [[M...] said:

I have no clue what happens with these benzo stuff I gained 60 pounds of fat only on my belly and Thighs and it’s not water retention but all my labworks are perfect 

these drugs destroyed all I have I have severe dystonia too 

Maybe metabolic syndrome/insulin resistance? I read about this when looking for information about edema...

[[Cu...]]

 

Yesterday I visited an immunologist. After studying all the tests she said this is not a w/d.
Because other symptoms had passed. This is consequences of long-term use of psychomedicines. She prescribed me a lot of supplements to restore the liver and the whole body.

But I think her diagnosis is wrong and it’s a waste of money...

She said it just to say something.

I'm 28 months already but the swelling gets worse.

 

[[Ma...]]

On 13/09/2023 at 16:32, [[C...] said:

Yesterday I visited an immunologist. After studying all the tests she said this is not a w/d.
Because other symptoms had passed. This is consequences of long-term use of psychomedicines. She prescribed me a lot of supplements to restore the liver and the whole body.

But I think her diagnosis is wrong and it’s a waste of money...

She said it just to say something.

I'm 28 months already but the swelling gets worse.

Hoe are you now?