Help! I was just diagnosed with Idiopathic Edema by a Rheumotoligist in Nashville, TN. I have struggled with a short list of symptoms for the past 7 years but they are increasing at a rapid rate. I will be 38 in 3 weeks. My symptoms include extreme fatigue, mouth sores, bruising, muscle spasms in the hands and feet, extreme sensitivity to the cold, facial swelling in the jaw tissue to the point it hurts to chew, high blood pressure, swelling in the hands and feet, constipation, re-occurring UTI and throat infections, skin changes and horrible PMS and sensitivity to hormone changes. I notice these symptoms are worse during stressful days and always around my menstrual cycle. I basically have one week out of 4 in a month that I feel or look any kind of normal. The week before my period I feel like Satan's sister, I don't even like me! I have had heart tests, kidney tests, allergy testing all of which are always normal. The swelling in my face is sometimes so defined on one side or another it hurts to chew and I almost look deformed. It can come at any time and stress or hormones is all I have been able to relate it to until now. After my diagnosis of Idiopathic Edema I have been placed on a beta blocker and a daily water pill. I do feel some better but not 100%. My mother was adopted and anything I read regarding this diagnosis says it is genetic and rare. Any help you could give me I would great appreciate. It is a pleasure to meet all of you.
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Hello again!
I hope you received all of the articles by now. Your symptoms follow pretty close to what I experienced over the years. I have experienced chronic fatigue in the past. I have always bruised extremely easily. I have had chronic constipation since childhood. I occasionally get itching with or without rash and hives. I have developed a Raynaud's type of disorder where I experienced blanching of the tips of my fingers and my toes turning bluish purple. In the warmer weather my hands get red and swollen and it is all very uncomfortable. I have not have mouth sores since I was in my teens. Had multiple UTI's until I was about forty years of age. I wanted to kill someone if they asked the same question over and over. "Do you wipe front to back." Uggh. I experienced the worst PMS symptoms and hormonal shifts. I too belonged to the Satan's sister club at that time as well. ;-) I have been diagnosed with so many things that were not true and treatments that did not help. You are perceived as crazy (or as I like to call it "nutsy-futzy). Doctors can look at you and dismiss the edema staring them in the face because they don't know what is causing it. Since they don't know, you are again nutsy-futzy)! I too was on a beta blocker but nothing helps for long and many diuretics do cause a rebound effect. Nice right? I am stubborn, so even after being diagnosed I would only take the medication when I was really bad. Big mistake many of us make I am told. I finally stabilized when I took the medication every day. Drinking some warm water with a little stevia (instead of lemon, uggh) works well for me for constipation as well as H2GO when I am "not in remission". The medication works the best for that also. So, we all have so much wrong that we do sound crazy. This disorder involves the capillaries and may be a defect in all our tissues as well. This leakage from our intravascular space to our extravascular space causes a lot of these issues. Toxins and hormones (chemicals) spilling where they shouldn't be and causing edema, hormonal shifts, itching, hives, fatigue, and havoc with our bodies. So you are not alone but I can tell you that you can stabilize and find other people who share this disorder. We will support one another and help all to get the treatment they need. Hang in there and if you have any questions about the disorder or about seeing Dr. Check I will help in whatever way I can. Ei
Hi there,
Nice to meet you too. I’m so sorry to hear this news. I feel for you and hope that you find answers and relief from your symptoms soon. Your description is different from mine yet know that all of us have variations on this crazy theme. One thing that caught my eye is you’re on a water pill or dieretic which Dr. Check said “never let anyone give you a dieretic it causes a rebound effect” which I learned the hard way. Basically the edema episodes reoccurred for several months in a row instead of the handful of crappy times a year. The other thing that causes rebound is extreme heat, I was spending loads of time in a steam room or hot tub which initially felt great but later suffered the edema month after month for a period of time. I’m not a medical professional yet would be hesitant about taking the water pill. If you haven’t read the article by Dr. Check on this blog site I’d encourage you to do so, it has so much information and I had to look up a lot of the terminology yet it’s worth the time. I’d also recommend contacting Dr. Check at his PA office to discuss & paying him a visit it would be worth the trip to get evaluated. I’m glad you came across this blog it helps to know there are others out there & it’s a great place to ask questions. I’m happy to help in any way I can so holler of you need anything.
Best to you!
Cathy