Discussions By Condition: I cannot get a diagnosis.

whole body swelling and edema help!!

Posted In: I cannot get a diagnosis. 50 Replies
  • Posted By: theresemarie
  • December 31, 2007
  • 02:18 AM

Im just going to give this a try and see if anyone out in this broad world may have an answer for me! Last may i was a 42 yr old healthy woman--i slept thru the night and had no aches and pains at all--barely ever took a tylenol--nothing. Then all of a sudden i started waking up in the middle of the night with aches in my arms and hands--my hands would cramp up and freeze too if i wrote or txt longer than a few min--and i was so tired(extreme fatigue) and i had a slight swellin on the very top of both my feet. No headaches--night sweats or fevers--i just hurt. well i went to my reg family doc and she immediatly thought lupus and sent me to a rheumotologist. (my mother has ms by the way) All the tests were negative--i had a chest xray--tons of blood work and even a bone scan before i was sent back to the fam doc. All they found was a case of anemia and vitamin d deficiency. then the fam doc sent me to a endocrinologist( and i will mention at this time that i had had gastric bypass a year earlier with no complications at all) and at the endo doc they diagnosed me with hypothyroidism and gave me synthroid .05mg everyday and i take iron pills now and vit d. Now by this time I had edema from the tips of my toes all the way up to the tops of my breasts--my legs-arms-my hands-and torso swell --every single day. my legs are the worse due to the gravity. everything but my neck and head. I have had a echodardiogram and my heart is normal--i have had a colonoscopy and a egd all with normal results. I live every day with pain and swelling--and it is pitting edema on my feet and legs--everywhere else in non pitting--tho when i wake up in the morning u can see where the wrinkles from my sheets are on my arms and torso--its been 8 mnths now and i am steadily getting worse and ive even been to a infectious disease doctor because one month before the symptoms i had gone on a cruise to cozumel --that doc tested my protein and its fine and they thought maybe it was filaris but have ruled that our saying that the disease is not where i went on vacation. I am so depressed now because i am sick all the time--i have no diarhhea--no abdominal pain--just the aches in my arms and legs. I have the cramping in my hands and feet --oh and by the way i had a cat scan to ck my vena cava--that was fine--they did say i had whole body acisites going on tho--any clue on what it may be? my blood work is normal besides the anemia and hypo and vit d deficiencies---HELP! i am a married mom of 5 and this is really affecting my life. Thank you

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50 Replies:

  • Have they checked your liver enzymes? Do you have retention of urine or is your output scanty?DOM
    acuann 3080 Replies
    • December 31, 2007
    • 02:50 AM
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  • dear mam i think you should have your renal function test done. please check with your doctor for neprotic syndrome
    fatimah 2 Replies
    • December 31, 2007
    • 02:57 AM
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  • by the way --all liver and kidney functions are fine--there is nothing showing up in my blood work so far--
    theresemarie 2 Replies
    • December 31, 2007
    • 03:01 AM
    • 0
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  • Interesting. Have you tried diuretics? Fresh parsley tea is very good. Any other herbal diuretics have you tried? Acupuncture and Chinese herbal medicine may really help with this. In Chinese Medicine this is a problem with what is called the San Jiao meridian. Please consider this form of medicine. Best wishesDOM
    acuann 3080 Replies
    • December 31, 2007
    • 03:05 AM
    • 0
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  • i have been taking lasix for awhile but that really doesnt help much at all--they doctors all say they cant treat anything until they find what is causing it--im getting sent to a research hosptial soon because ive run out of docs where i live --i just cant believe that its this hard to figure something out-- does anyone out there think it could be a blockage in my lymph system? The infectious disease doctor said no because he said i wouldnt have the swelling in my upper body too--it would just be in my lower body--but for all i know he doesnt know what he is talking about--i havent had a test to test that theory yet--any thoughts
    theresemarie 2 Replies
    • December 31, 2007
    • 03:10 AM
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  • what medication are you taking at the moment
    fatimah 2 Replies
    • December 31, 2007
    • 03:47 AM
    • 0
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  • i take iron supplements and lasix for swelling and synthroid for the hypothyroidism and other than that just multi vitamins
    Anonymous 42789 Replies
    • January 1, 2008
    • 01:25 AM
    • 0
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  • Since it does not sound like water retention there is an ailment known as lymphedema. it is basically the lymph system that is not draining correctly and the lymph fluid builds up in the interstial skin layers. The treatment for lymphedema would be to see a lymphedema therapist to do lymphatic drainage massage, possibly compression stocking ect. If there is a teaching hospital near by I would make an appointment to see someone vascular medicine. I was diagnosed with lymphemdema bilateral legs. Lymphedema can even be in abdominable area. Also have the doctors done a full vitamin panel yel yet ABCDEK. Vitamin D deficiency can cause bone pain tooth enamel to become thin and cause a greater chance for cavities, lethargy, increased chance of cardiovascular disease stroke ect, other vitamin deficiencies can have other symtoms you are experiencing as well. hope this helps.christinarightmerca@hotmail.com
    Anonymous 42789 Replies Flag this Response
  • I have the same problem and doctors cant figure it out either. Ive had the edema for 5 years. Im on the same meds as you, except for the iron. I had all the tests that you did plus the lympedema test and still nothing. I got temporary relief while on Prescription Vit D and 400mg of coQ10 -- the Q-Gel Brand. Now it is back again after 4 months of no edema. The only thing that changed is now im not on the prescription vit d, so perhaps the prescription vit d did the trick. I dont know. If you find out anything let me know. Have you been tested for a mitrochondrial cell disorder? You would need to see an immune doctor for this.
    Anonymous 42789 Replies
    • October 18, 2008
    • 02:09 AM
    • 0
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  • I feel your pain. You and I are going through the same thing! I am 34 and I am so depressed due to this edema. My legs throb, ache, and are so painful! I cannot work due to this. My whole body is swollen! I was just diagnosed with venous insufficiency/varicose veins, given support hose and LOTS of diuretics. It has gotten worse in the last two months. I have gained 20 pounds in 2 months with this edema. (You may not be gaining weight from the edema as you are also losing weight from the gastric bypass. I betcha if you got rid of all the edema, your weight would drop a LOT more!) My edema has now gone up to my abdomen and arms, like you. By the way, acisites is a term for swelling in a body cavity. It is usually a term to describe abdominal edema in association with cirrhosis of the liver and other liver conditions. I was wondering if you wanted to maybe chat privately since we are going through the same thing. I need support and maybe we could share info. I also had a gastric bypass... four years ago. I am also diagnosed with iron deficient anemia (makes you feel so tired and crappy, doesn't it?) I also have hypothyroidism. Doesn't that make you think that we both are having symptoms of something larger? Have you ever been tested for Cushings syndrome by your endocrinologist? Some of the symptoms we have may point to that, even the swelling. Usually not the severe leg edema, that horrible pitting stuff, but I thought I'd get tested. I would love to talk to you about possibly other symptoms you may not even be aware about. I often discard things to just getting older, etc. but maybe somehow you and I can find a "link"? Just a thought. I am at the bottom of my rope. If you want, you can email me at kathy8167@gmail.com. I hate putting my email address out here but that's how much I would like to converse with you. Maybe we could even chat over the phone? If you only want to communicate over this thread, that's fine, just don't lose touch! We need to let each other know what the doctor tells us. What if either of us got cured? We could help a lot of others here with that info. I will keep you in my prayers... Is your name Therese, or... ? Where in the country do you live? Boy, I sound like a stalker, don't I? No specifics, just keep it general. :) Today, I feel hope because I learned I am not alone in this. Thank you for that. Good luck and keep those feet up! ;) -Kathy
    kathy8167 1 Replies
    • December 31, 2008
    • 00:40 PM
    • 0
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  • I happened to be searching the internet regarding the pitting edema and weight gain and found this site. I too have these symptoms that started about 6 weeks ago. The only thing I did around that time was have the Laser therapy to stop smoking. Yes I have stopped smoking, but now have this.
    Anonymous 42789 Replies Flag this Response
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  • The symptoms you all have been describing is exactly what my wife has been experiencing. it started for her when we got back from our honeymoon in cancun a year ago. the thought it was rumatoid arthritis but later told she had 3 different types of parasites. she's been taking natural and herbal pills and pumpkin seeds to get rid of them. it seems to be working and there are signs of improvement.
    Anonymous 42789 Replies Flag this Response
  • The symptoms you all have been describing is exactly what my wife has been experiencing. it started for her when we got back from our honeymoon in cancun a year ago. the thought it was rumatoid arthritis but later told she had 3 different types of parasites. she's been taking natural and herbal pills and pumpkin seeds to get rid of them. it seems to be working and there are signs of improvement. *** HELLO TO FISHFACE (AND ALL) !! Are you still here ? I am doing research on parasite-induced edema - I have been dealing with edema for years and I suspect that this may be at least part of the problem - and I think I am finally learning how it may cause the swelling. Parasites are so much more common than realized. And - you do not have to leave the country to get them. I have some theories about this - if people would like to discuss this - please let me know - I don't know if anyone will be coming back to this thread or not. There are some non-prescription treatment approaches that could work.Also, anyone please feel free to email me : blissparadise@gmail.comI hope to hear from someone so that we can share what we have learned.Sara
    Anonymous 42789 Replies Flag this Response
  • Hi folks, I am in the same boat -- I have been doing a lot of research on this far and wide and I have several ideas - one is that it can be a combination of things that cause it. Once the edema gets bad (whatever the cause) the pressure on veins from the swelling and from the extra weight can cause the veins to become insufficient. That is one thing. If there is a vein component and/or a lymphatic damage component, diosmin and hesperidin (natural bioflavonoids) have been found to help both of those problems - youtube has a video on a similar product called, Daflon 500 - it is better than what we have here because it is micronized for better absorption. The you tube video only goes into how it works on veins but if you go to the site of the French manufacturer - you will see mention of it's use for lymphedema - which, you will see if you read below, can develop (and cause much more edema) because of the damage the swelling itself causes. Also, there parasites which are easily gotten in "civilized" Western countries like the US and Europe, etc - can cause chronic infection and clog up and damage the lymph nodes and vessels - that, of course, will make it impossible for the lymph to get out of the tissues of the body and back to the heart. Modern medicine is just awful at diagnosing parasites - I could write a book on that topic. I saw a post here on another thread where a man stated that his wife's edema was, in fact, improving since taking natural antiparasite treatments. Personally, I have not found the usual approaches of that sort to help - but not all parasites respond to them. There is no doubt that parasitic infection can damage the lymphatics ! The cdc only discusses one type that they think can cause edema - wrong ! any chronic infection can damage the lymphatics and parasites are so large compared to the size of bacteria or viruses - of course they would do more damage in a short period of time. I would love to continue this but since I don't know if anyone will return to this thread, I will wait to see. May will figure this out soon. June
    Juniper 4 Replies Flag this Response
  • Hi all, I too have been doing a bit of research on this issue. I have been suffering from full body edema for the past 6 years and I still have no answers. I've seen numerous GPs but none of them could help me. I've also been treated by a vascular surgeon and numerous specialists of differing fields. I've had blood and urine tests for protein deficiency / hormones / thyroid / diabetes / renal function / liver function / etc, as well as an abdo CT / lymphocintograph and numerous dopler ultrasounds, all with normal resuilts. I'm currently seeking treatment from a Chinese herbalist but so far the results haven't been promising. It started with swelling in the legs on a daily basis in late 2003, and quickly progressed to include an occasional full body swell - right up to my face. During this time, I was using contraception via the depo ralavera injection followed by implanon with a lengthy break in between of no contraception, all with similar swelling symptoms. Since having the implanon removed in January 2009, my swelling has been getting worse. I am swollen every single day with a full body swell monthly. It's gotten to the stage where I don't even know what my normal body looks like anymore. I have the pitting edema in my legs and non-pitting edema everywhere else. I often get a distended abdomen during my full body swell and I find my swelling worse after I work night-shifts. Back in April I gained 6 kgs over a period of 2 days due to fluid retention and I have not managed to lose any of this weight over the past 7 months. I am an otherwise healthy person who exercises daily, running 10km 4-5 times a week as well as light weights and cycling. I have a very healthy diet consisting of mainly fruit and veg with very little processed foods. I don't smoke and rarely drink alcohol. I am a 27 year old female and, after 6 years of swelling, I'm finding it very taxing on my emotions. I would dearly appreciate hearing if anyone has found out any more information. Kind regards,FRUSTRATED IN AUSTRALIA.
    Anonymous 42789 Replies
    • October 31, 2009
    • 06:34 AM
    • 0
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  • Hello, Frustrated In Australia. I have whole body edema and would like to let you know of what seems may be an effective and yet little-known treatment that is actually out of Australia. I would love to live there right now. I live in the US and that makes it a bit difficult to do it properly---without the guidance of the therapist who developed it. I do not want to do any shouting from the rooftops about it yet ---but will share about once I am further into it myself and can confidently report on it. However, since you live in Australia, I would like to tell you about it as you may be interested in checking it out. I have no financial interest in this myself. I am really suffering from anasarca (whole body edema) and do a lot of research, as you do. I hesitate to leave my email address here but here it is (I had originally registered under a different name so you may see the email address there as well) blissparadise@gmail.com . Sorry that you are dealing with this too --- having it affect the whole body is very challenging. Perhaps we can make some headway. Looking forward to hearing from you. June I am very serious and sincere about this .... I look forward to hearing from you. Hi all, I too have been doing a bit of research on this issue. I have been suffering from full body edema for the past 6 years and I still have no answers. I've seen numerous GPs but none of them could help me. I've also been treated by a vascular surgeon and numerous specialists of differing fields. I've had blood and urine tests for protein deficiency / hormones / thyroid / diabetes / renal function / liver function / etc, as well as an abdo CT / lymphocintograph and numerous dopler ultrasounds, all with normal resuilts. I'm currently seeking treatment from a Chinese herbalist but so far the results haven't been promising. It started with swelling in the legs on a daily basis in late 2003, and quickly progressed to include an occasional full body swell - right up to my face. During this time, I was using contraception via the depo ralavera injection followed by implanon with a lengthy break in between of no contraception, all with similar swelling symptoms. Since having the implanon removed in January 2009, my swelling has been getting worse. I am swollen every single day with a full body swell monthly. It's gotten to the stage where I don't even know what my normal body looks like anymore. I have the pitting edema in my legs and non-pitting edema everywhere else. I often get a distended abdomen during my full body swell and I find my swelling worse after I work night-shifts. Back in April I gained 6 kgs over a period of 2 days due to fluid retention and I have not managed to lose any of this weight over the past 7 months. I am an otherwise healthy person who exercises daily, running 10km 4-5 times a week as well as light weights and cycling. I have a very healthy diet consisting of mainly fruit and veg with very little processed foods. I don't smoke and rarely drink alcohol. I am a 27 year old female and, after 6 years of swelling, I'm finding it very taxing on my emotions. I would dearly appreciate hearing if anyone has found out any more information. Kind regards,FRUSTRATED IN AUSTRALIA.
    Juniper 4 Replies
    • November 1, 2009
    • 03:17 AM
    • 0
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  • I just happened to stumble upon this site and have a very similar problem. I was sick since 2002. Dr's couldn't find anything wrong with me. They had alot of ideas but I always tested negative for everything. Here is a very short discription of my problems. Massive fluid retention in my arms, legs and abdomen, that would get worse as the day went on. Headaches, all my muscles ached, terrible pains in my abdomen that would only go away if I layed down. My stomach would sometimes blow up at night and I would look like I was eight months pregnant. I would often have to change cloths during the day because my body size would flucuate that much ( size 2 up to a size 8). I would slowely retain more and more fluid over the months. This would go on for a few months then I would get better and then it would come back again. It was very frustrating and I would get very depressed because I didn't understand what was wrong with me and why the Dr's couldn't find anything wrong. I have seen approximately 13 specialists. Anyway, I was on the internet one day and stumbled upon a disorder called Idiopathic Orthostatic Edema. It is a capillary leakage disorder. No Dr's in my area had ever heard of it or if they did never saw anyone that had it. So they didn't know what to do for me. I found some possible treatments that they agreed to try but nothing worked. So I researched it more and finally noticed that the papers that had the most research were almost all by the same Dr. I fought to get my insurance plan to approve a consoltation and things are going very well. I'm not sure if this is what is going on with you, but I do think it would be worth your time to look up some of the info that this Dr. has published. The disorder can present in many different ways. Not everyone has all the symptoms and certain ones seem to bother different people more. There is no actual test to diagnose it except for a water load test, symptoms and exclusion of other disease states. I hope this helps and I hope you find out what is wrong with you. It is very, very frustrating being so sick and not knowing why. The disorder is Idiopathic Orthostatic Edema and the Dr's name that has all the published research is Jerome H. Check, M.D., Ph.D.
    Anonymous 42789 Replies
    • November 2, 2009
    • 08:39 PM
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  • I'm thinking kidneys, if your heart is ok. Any recent urine results to post ? What is your dietary protein intake like ?
    gungwane 62 Replies
    • November 3, 2009
    • 05:52 AM
    • 0
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  • I'm thinking kidneys, if your heart is ok. Any recent urine results to post ? What is your dietary protein intake like ?Thanks for your suggestion. I've had a few urine tests, including a 24 hour urine collection, and I saw a renal physician last week. The only thing he could tell me is that I excrete more protein than normal, but it wasn't enough to create the swelling I'm experiencing. He said it doesn't appear to be life threatening, my legs aren't going to drop off, I'm too young to be needing to see a renal physician, and I'm otherwise fit and healthy. He told me to save my money, put up with it for a few more years and monitor any changes. Back to square one...
    Anonymous 42789 Replies
    • November 8, 2009
    • 05:56 AM
    • 0
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  • I have the exact same thing that you have described. I have been on Synthroid for 23 years and my dosage never changed until after I had a Hysterectomy 4 yrs. ago. It has been up and down, but was way down again and my Dr is gradually bringing it up. In the meantime, I had seen a Vascular Surgeon for my varicose veins, and I asked him about the swelling and told him I had been gaining weight like crazy. He said that most of what I thought was fat, was actually fluid and that I have Primary Lymphedema. He referred me to a Lymphatic Massage therapist at a Physical Therapy office. I don't start until Nov. 23 and I will go 4 days a week for 4 weeks and be wrapped the entire time. The part that I hate is that I will always have to wear support stockings to prevent it from coming back. The director who took my history and examined me said I had alot of fluid all in my arms and legs, hen poked my abdomen and said that it was full too. (Feels very tight and hard). Sometimes I even feel like it is in my neck and causing pressure on my throat. The PT Director also asked me if I had any underlying problems with my Adrenals. I told her as far as I knew I didn't. She told me to Google it and see if I thought I had any symptoms worth getting checked out. I had alot of symptoms of too much cortisol, but when I had the blood test to get it checked it was very low. If you Google that you will get more info than I can write here, but the sleeping problems, swelling, muscle weakness/pain, joint pain and extreme fatigue were described exactly how I have been feeling. I am going to have further testing with an Endocrinologist. I would suggest that you read all you can about cortisol and then have the morning blood test. It is amazing what our bodies can do to us and how our Drs. can over look so much of it!! Good luck to you and keep us posted!Im just going to give this a try and see if anyone out in this broad world may have an answer for me! Last may i was a 42 yr old healthy woman--i slept thru the night and had no aches and pains at all--barely ever took a tylenol--nothing. Then all of a sudden i started waking up in the middle of the night with aches in my arms and hands--my hands would cramp up and freeze too if i wrote or txt longer than a few min--and i was so tired(extreme fatigue) and i had a slight swellin on the very top of both my feet. No headaches--night sweats or fevers--i just hurt. well i went to my reg family doc and she immediatly thought lupus and sent me to a rheumotologist. (my mother has ms by the way) All the tests were negative--i had a chest xray--tons of blood work and even a bone scan before i was sent back to the fam doc. All they found was a case of anemia and vitamin d deficiency. then the fam doc sent me to a endocrinologist( and i will mention at this time that i had had gastric bypass a year earlier with no complications at all) and at the endo doc they diagnosed me with hypothyroidism and gave me synthroid .05mg everyday and i take iron pills now and vit d. Now by this time I had edema from the tips of my toes all the way up to the tops of my breasts--my legs-arms-my hands-and torso swell --every single day. my legs are the worse due to the gravity. everything but my neck and head. I have had a echodardiogram and my heart is normal--i have had a colonoscopy and a egd all with normal results. I live every day with pain and swelling--and it is pitting edema on my feet and legs--everywhere else in non pitting--tho when i wake up in the morning u can see where the wrinkles from my sheets are on my arms and torso--its been 8 mnths now and i am steadily getting worse and ive even been to a infectious disease doctor because one month before the symptoms i had gone on a cruise to cozumel --that doc tested my protein and its fine and they thought maybe it was filaris but have ruled that our saying that the disease is not where i went on vacation. I am so depressed now because i am sick all the time--i have no diarhhea--no abdominal pain--just the aches in my arms and legs. I have the cramping in my hands and feet --oh and by the way i had a cat scan to ck my vena cava--that was fine--they did say i had whole body acisites going on tho--any clue on what it may be? my blood work is normal besides the anemia and hypo and vit d deficiencies---HELP! i am a married mom of 5 and this is really affecting my life. Thank you
    Anonymous 42789 Replies
    • November 8, 2009
    • 05:30 PM
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