Hi guys, I am a 30-something guy. I've been trying to find diagnosis for years now, without luck. Doctors dismiss me, probably because I don't feel any pain.
My problem is that I have symptoms that make me... ugly. My body retains a lot of water, sometimes more, sometimes less. I have skinny arms, but tend to get a big bloated belly and face. My skin goes from dry to super dry (including eyebrow dandruff). I still haven't found what is triggering the worse looks, it's probably either some food, stress or both. When the symptoms are the worst, my face would look dull, tired, asymmetrical (right corner of the lips facing down) and fat (because of the retained water). I don't look like myself. when that happens. Several years ago I'd look like that maybe once in a couple days. Now I look like that most of the time.
I drink very little alcohol, never smoked, but I overuse sugar. Lab tests say I do not have diabetes. My thyroid tests are perfect.
Other symptoms include halitosis, white coat on the tongue (all the time) and one intimate problem. My penis shrinks a lot when I'm in a worse state - the muscles down there contract as if I was in a cold water. The head of the penis looks dehydrated and the skin is less flexible. I do get erections, but when my state is bad, they are not pleasant, because of that skin. I am circumcised.
I am a very emotional person with traumatic past. My symptoms could be psychosomatic. Doctors love to dismiss my problems, especially when they learn about my neurotic nature. That's why I started to take photos of different stages in my symptoms. They talk to me differently now, because I have a proof. But they still don't know the cause.
Here's my question to you guys - do my symptoms look familiar to you? I thought of checking my kidneys because of the dry skin and general feeling of being a bit like "poisoned" all the time, if that makes sense. I know that kidneys are supposed to filter out toxins, so maybe the looks I'm getting are caused by permanent poisoning?
Any feedback appreciated
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bearek
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I swell up and look pregnant. I have a horseshoe kidney and was undiagnosed until 32. I am a small woman and not overweight and my condition was discovered due to ileus and nothing working in my abdomen due to taking Tylenol. The shrinking thing can be something akin to Raynauds - I don't have that kind of genitalia so don't know how it affects men but I am always freezing and my hands and feet will go from red to dark purple at times. Have you had a free-floating T4 done to rule out other thyroid-like conditions? Such as familial dysalbumichyperthyroxanemia? not sure I spelled that right or been checked for Lyme Disease, MS, or Lou Gehrig's?
So, I had a full thyroid profile done and everything was great in numbers. I was surpsised to be honest, because hypothyroidism would explain my symptoms. But looks like nah.
I've been to a cardiologist for the first time in my life recently and everything was perfect too. He said my heart is super healthy.
As for the Raynauds, I've never heard of it before, but it definitely looks like what I experience. There must be something about the circulation down there, plus maybe possible stress response. Circulation itself doesn't cause that much contraction to my knowledge. And sometimes it gets ridiculous, like my penis wanted to disappear by shrinking as much as it can. Same goes for testicles - they'd go up as high as they can, to the point when it's easy to hurt them. This is a very embarrassing problem for me, I must say.
I need to do some research about the horse kidney that you're experiencing. As for the medicine, I have never taken any meds for longer than couple of weeks. And they were mostly psychiatric drugs or something for acid reflux. I haven't taken any meds in years now.
Had to chime in again, you sound like me before (although a bit more conceited, just kidding) I wasn't conceited I was convinced - minus a penis. It took years for me to finally figure it out and still have not quite. See a chiropractor if you have a subluxation it can cause edema, swelling, stress, tension, and a variety of other problems. I actually had a fracture in my spine and had to have plates put in. I have an extremely high pain threshold because simply put if you have never been without pain how do you know that what you feel is not normal for everyone. I had 30 minutes once pain-free after the right drug combination and that is when I discovered I had not had a moment in my life I could remember that I was not in pain. Other considerations get blood metal levels done for lead, mercury, etc. . . test for Lyme Disease, MS, and so on. So many things can cause these symptoms. There is a site I use off and on it is called mydiagnosis I believe and it was spot on but at least two years before the diagnosis it came up with was diagnosed but it hit it right on on every single one before it was clinically diagnosed. The site maybe called yourdiagnosis not sure which.
Hi Bearek, Sounds like you've been through the wringer. It sounds, to me, like it might not be a physical problem but something caused by stress or food. You said you had a traumatic past... are you seeing a talk therapist? Not an MD kind who likes to prescribe meds but one who listens and hears what you have to say, to talk through your thoughts. Also you might try FODMAP, look it up. Food can cause many problems and it might not be an allergy problem. It's an elimination diet and is strict at first. Basically, you eliminate certain foods, see how you feel, then start adding them back in slowly. Also, I would suggest you start keeping a food/feeling/symptom diary, keep it daily. That will be a big benefit in helping you figure this out. Good luck kiddo
Hi joader, thank you for your post. Yes, I have a lot of experience with therapies. I gave up with them, because it always felt too slow and too shallow. Complex trauma is really difficult to wrap one's head around. Talking once a week for an hour is definitely not enough in my opinion. "Sounds like you've been through the wringer" - I think I have My childhood was very stressful, I've been having suicidal thoughts since the age of 7 and went through a lot. There is a lot of somatization going on in my case for sure, but hard to say what exactly.
I have heard of FODMAP before, but have never tried. I need to give it a serious chance.
As for how I'd sum up my symptoms in general, it looks like they all have something to do with blocking and contracting. But I don't quite understand why I couldn't find help for so many years. I am a very ambitious person in general and also very focused on the looks. So it is possible that doctors see me as an okay looking guy even with my symptoms, while without them I'd be a hottie My problems are not a matter of life and death, so maybe that's why they dismiss me that easily. I wanted to be an actor all my life, but when my face started to swell so much, I got ashamed of my looks. I don't look like myself on the photos. Today it is very rare for my symptoms to be relieved to a satisfactory level, but it still happens. And before it happens, I am definitely in a good mental space for at least a few hours. An easy answer - one given by several doctors - is that it's my mind playing games with me, making me see myself in certain way, good when I'm happy and bad when I'm miserable. But this is complete crap. I look at my photos from different days and the difference is huge. Also, when my symptoms are milder, people are much more attracted to me and I love it. These symptoms destroyed many years of my life and I don't even see any perspective for the better. If I was about to guess, I would say that it is absolutely possible that it's all a somatisation. I don't know many people who went through so much stress, fear, negligence, self-hatred and humiliation in their life, let alone childhood.
FYI, there is a type of therapy that may be helpful....somatic experience therapy. directory.traumahealing.org/As far as the physical causes, there are many avenues to check out: celiac disease? heavy metal toxicity? chemical sensitivities? microbiome/gut? I'm no doctor but it sounds like there's more than one thing going on, Raynaud's being just one. Keep digging and find your healing team.
Bearek sorry you are going through this . Prayers lifted for you. You ask if it could be a kidney disease. Have the did a renal panel on you? I have polycystic kidney and with that many time my stomach has look like I was pregnant and that happen to men to with pkd . An ulta sound can help with that to see if there cyst in your kidney some pkd kidney can get the size of a football . Good can do a lot as someone mention a food diary is good to keep. Keep a journal and write down how you feel every day I don’t have answer for you I hope it will all be figure out.
Have you ever taken the drugs propecia, finasteride, dutasteride, or accutane? If no, then consider that sugar causes you to retain more water. When I stop eating sugar I lose 5 pounds within 4-5 days simply because I'm losing the water retention (and sugar cravings go away), and when I eat sugar again I the cravings come back and I gain the 5 pounds of water, and yes I definitely see swelling under my eyes and in my face.
I have three comments: #1 What are the chances that you can reduce your sugar intake? Even you recognize it as a problem so you really have to do something about it. #2 Do you take a probiotic? It won't cure your ills but it might help with some of your problems. #3 Have you considered yoga? I think you would benefit from it because it can bring an inner peace which I think is what you are looking for.
Do you have access to your lab results. Look for a test called eGFR, that is the test of kidney function. It is a standard blood test. Anything above 60 is considered normal. You can read about the stages of kidney disease online. Since you have been to the Dr. and had blood work it is likely you had the test.
If your kidney numbers like Creatinine and eGFR are fine it's doubtful your kidneys are the cause.
Edema can be caused from many things. Some as simple as too much salt in your diet or food allergies.
Since your blood work is fine I'd consider other reasons than kidneys.
Look up edema and see the numerous causes and see which ones are more likely in your case.
If you are on any medications it could be a side effect of your meds.
If your Dr. has seen the edema and not diagnosed it then change Drs. Otherwise get a same day appt. when you are having your symptoms so the Dr. can be aware of what going on and run tests if needed.
Keep a journal of what you ate, drank and did the day before your edema is bad, unless you are saying you have chronic edema.
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Back to my kidney diet.
Are kidneys ok?
If your kidney problem is caused by autoimmune disease, better find a Rheumatism doctor 
Just Diagnosed Kidney Disease Stage 2
