Weird swelling
moonie_57 (8 NC)
7 years ago
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Saints, Dry Eyes and other stuff.
Comments (23)Hi Karen, this is going to be a bit long but please bear with me 'cause early Sjogren's is sneaky & I'd like to give you a reasonably comprehensive overlook. I'll start with Dry Eyes & Dry Mouth 'cause they are hallmarks of Sjogren's. Dry Mouth - Even as a teenager, I remember always having a drink with me although I don't exactly remember why. Never went to the store, never went on a date, etc. without that drink. It was a part of me. It wasn't as if I felt urgent need to hydrate myself. Just always this desire for frequent small sips. That continued for the next 30 years but didn't get any worse. About 6 years ago, it became uncomfortable enough I started mentioning it first to DH. "Gosh, my mouth feels like cotton balls!" Soon, it was bothering me enough I mentioned it to my primary care doctor. I was taking Flexeril at the time for a spinal injury & my PC doctor just shrugged the dry mouth off as a side affect. Now, it's so dry it bleeds. Mouth sores - yes. Dry lips - yes. Blisters - yes. The dry mouth has progressed to now being nearly impossible to deal with but that has taken decades to reach this point. Dry Eyes - My eyes have sorta "itched" for several decades. I never thought much about it. I've had eye infections over the years also but they were far enough apart I didn't think to mention it to a doctor when a new one turned up. Dry eyes have not been my primary focus with Sjogren's but they are now dry enough my opthomologist pretty much insisted I have the Eye Plugs inserted. They've helped, a lot. I still need drops. Eye lid infections - yes. Sores in the corners of my eyes - yes. Swallowing, Talking, Choking - My Sjogren's has progressed to where I can hardly talk anymore. I also have trouble chewing & swallowing. Many foods are impossible for me to eat. My diet has changed dramatically in the past 3 years. I also choke - especially on pills but also just trying to eat a meal. At night, my throat swells & sticks together blocking off my air. I wake up in a panic reaching for water. Dry Skin - Again, for as long as I can remember I've had dry skin. I'd go through gallons of lotion. Now, I use prescription stuff that really helps. Fatigue - Gosh, just thought I was "weird" & a bit unlike my friends. I never had a curfew as a kid. Mom knew I couldn't stay up late enough to need a curfew. She was right. Sometimes, I would fall asleep practicing with my chin on my accordion. Again though - nothing that seemed like a trip to the doctor was necessary. I will say though that the fatigue was complete. Sometimes, it felt like lifting my arms to brush my hair was impossible. Muscle/Joint Pain - Today "this" hurts, yesterday "that" hurt. Everyday, somewhere else hurt. The pain would last for a day or weeks & then disappear just as mysteriously as it had arrived. I thought it must be "normal" & I was just a wimp. I was diagnosed with fibromyalgia at some point & from then forward whenever something hurt doctors would just shake their head & use that diagnosis as explanation for my pain. Many times the pain was unbearable. I once overdosed on aspirin trying to get relief. That episode resulted in more blood work. Negative for everything. The pain though continued. In my mid-40s, I had an extensive & unusual spinal surgery to correct a rare injury. The surgery almost did me in. After that surgery, doctors blamed the surgery every time I burped. I should note that I've had 13 major surgeries for "unusual" stuff. Fevers - I have a history of spontaneously running a fever. Fine one minute. Poof, next minute...I've got a fever of 101+ degrees. An hour later, I'm fine. Nightsweats - I've had then for decades. Always associated them with some cancers (I'm also a multiple cancer survivor) so I was afraid to mention them to my doctors. But, my fear didn't make them go away. Still have them. Still haven't told my doctors. Heart Palpitations - Ended up in ER. Diagnosed with "Anxiety Attacks". Nope. Sjogren's. Sensitive to Temperature Changes - I'm either cold or hot. There's only about a 5-8 degree range I'm really comfortable. It's not just chilly or a bit warm either. I'm either shaking from cold or in ER from heat stroke. So, we keep our house even temperature year around. Sometimes, cost isn't everything. Dental - Gosh, where to begin? Let's just say I fought a good fight but just a couple years ago I said, "ENOUGH! I can't tolerate this anymore. Pull them out, every single one - NOW! I'm not leaving this office until they are gone." Even implants would not stay in my jaws. I've pulled two that were erupting from my jaw by hand in the middle of the night to stop the pain. Now, I've got dentures (should have done that years ago!) but my mouth is so dry my tongue sticks like glue to the dentures & bleeds when I try to move it. Ugh. Neuro Pain - This is now a serious problem. I have no feeling at all in my legs/feet. Seriously, I can't feel the floor or anything else. Sharp pins/needles type pain virtually constantly. Stress - I had a garden accident July '09 & re-injured my spine around the surgical area (right between the shoulder blades). My back surgery had been so "unusual" a hotdog surgeon was brought in from Arizona. He published a "White Paper" on me that lives for eternity in medical journals along with the video they took of the the entire surgery. Anyway, the re-injury hurt so bad I had a stroke. Yep, I met the definition of "stressed" there for awhile. As I started to settle down from this little incident I noticed that my mouth was drier, my eyes were drier, my muscles/joint pain was worse, the fevers were more frequent, etc., etc., etc. I could go on with other symptoms but I think that's enough for you to get an idea of Sjogren's. Eventually, I found a doctor that treated me as a whole patient & didn't just look at the reason I'd written down for that particular appointment. It led to my diagnosis for both Lupus & Sjogren's. A word about the bloodwork is in order here, I think. I'd had these tests multiple times before - always negative. Many doctors said, "Tricia, I "think" you've got Lupus but your tests don't bear confirmation of that diagnosis." One even prescribed Placquenil & my fevers virtually disappeared. Unfortunately, that doctor left the practice & his replacement didn't believe my tests justified the risks of Placquenil. The fevers returned within a few short months. Anyway, my current primary care doctor redid the bloodwork yet again. This time, I was positive for both Lupus & Sjogren's. It tooks decades for those tests to turn positive. My last SS-A test results were 2.78. Positive. My SS-B test results were 3.25. Positive. Also, Sjogren's patients often show Vitamin D deficiency. I'm almost always testing deficient & take 50,000 mgs once/week for 4-8 weeks then off for a bit until we test again then back on for another 4-8 weeks. You will also, most likely, have an abnormally high SED rate. It will vary if you're having a Sjogren's "flare". BTW, that's the best time to make the doctor's appointment - when you feel awful, like you can't drag yourself anywhere. I'd recommend finding a doctor that will treat ALL of your symptoms. Treat you as a whole person with this variety of things happening that may seem unrelated, to you. Tell your doctor every little thing. Sjogren's is SYSTEMIC. It affects your whole body. Yes, there are specific markers like the dry eyes/mouth thing but many Sjogren's symptoms mimic other diseases. Diagnosis is often overlooked both due to doctor indifference & lack of persistence in patients. There is no defined Sjogren's protocol for treatment. It's a "treat it as it appears" approach for most doctors. (bummer) But, a protocol is being developed now & the goal is that it will be available to doctors in 5 years (I know, sounds like an eternity but, like breast cancer, you have to start somewhere). I've recently been excepted at John Hopkins. They have a specific Sjogren's department & a doctor heading that clinic who has chosen Sjogren's as his life work. My first appointment is October 18. I've received volumes of "stuff" from John Hopkins regarding my appointment that will be two full days. I'm got appointments for about a dozen specialized tests. I've got advanced Sjogren's & frankly feel just about defeated. After 50+ years, it's taken a toll. But, I accomplished a lot with my life - Sjogren's be damned. I don't know if my disease process will help you identify what you're experiencing, or not. But, don't ignore your symptoms. If they sound like they could be Sjogren's - be persistent. Just know that it will be a journey to diagnosis. Not a short sprint. Since getting me as a patient my PC doctor has been able to make a diagnosis on another women for Sjogren's. She's thanked me saying she would have overlooked the clues had it not been for having me as a patient. We're learned together about Sjogren's. So, doctors are becoming more aware & Venus Williams' diagnosis, hopefully, will also draw more attention to this autoimmune disease. mboston, don't give up. If your gut feeling is correct (and, IMO, our bodies usually tell us the truth) then you'll need to stay in your doctor's face until you get a blood test that pops positive. That can be illusive. If you're having a flare...make an appointment. Tell the receptionist that next week is not OK...you need an appointment tomorrow! /tricia...See Moreweird heartbeat issue-Ahhhhhhhhhh!
Comments (22)Hi Andre, I'm here to tell you that for years, I felt like I had a small animal living in my chest. I saw several doctors and had alot of tests. I have GERD, but its under control. You might need an endoscopy, just to make sure your esophogus isn't erroded, but I don't think its necessary at this point. I have IBS (irritable bowel syndrome). My intestines are very weird, fluctuating between diarrhea and constipation, gas, tons of pressure, burping, and constant activity/noise in my intestines. For me, my chest seems to be the focal point of my intestinal craziness. That's what I mean about feeling like I have a small animal living in my chest. I think some of us are very sensitive to internal sensations. I think some of us feel gas/food moving in our intestines, and it can be transmitted up into our chest. Our stomach is really very high up in our chests and many times, its easy to confuse feelings occurring in the stomach, with feelings in our heart/chest. I'm wondering if that's what you're feeling. I know that when I quit eating in the evening, I didn't spend the night with funky things going on inside me, and I would also get a better night's sleep. I think it would be a very good habit for you to get into, to quit eating after dinner. I know its hard, but I think you'd feel alot better......and sleep better. Did you know that our intestines are called "the second brain" because they secrete alot of neurochemicals, just like our brain does? When your intestines are working all night to digest the food you ate all evening........its going to keep you awake. I'm a compulsive eater, but seem to have gotten it under control most of the time. What's interesting is that when I overeat, or eat too many carbs, or eat in the evening, my CPAP machine shows that I don't sleep well.......even if I'm not aware of it. Anyhow.......sorry to get off on a tangent. But I just wanted to mention how sensitive some of us are to the goings-on in our intestines. Some of those sensations can feel like they are coming from the heart/chest. It should be interesting if an irregular beat showed up on the holter, when you sensed something. There are lots of things to do for GERD that don't even involve any tests or even seeing a doctor. Do an internet search on it, and you'll learn all the things you can do to lessen it. Also check out IBS and see if you have any of those symptoms. You also might be developing an intolerance to dairy or wheat. Try cutting back on your carbs. Keep us posted....See More*weird* upside of hot flashes...
Comments (6)Whew! I'm *just now* crawling out from under this horrible bug! I dared not to take antibiotics last night -- I started on a second Zithromax round but only did one night of it...let's see if it was premature. I don't think it's a polyps thing, although my tonsils were very swollen. Thanks, though, oakley. and I try to stay away from decongestants because I tend to get a rebound congestion which is a big PITA. The congestion is still there (still not minding the hot flashes :)) but it's not as nasty anymore. I hope it doesn't come back. Thanks again you all and now you know you may have something to look forward to this winter LOL...See MoreSudden Swelling of Joints & Leg Muscle Pain
Comments (9)I woke up with right hand swelling and within weeks the swelling included the left hand. Then it was the right and left foot, right and left knee, back of right and left knee, legs, both forearms and elbows, swollen veins under tongue, swollen eyes from the beginning. My hands will not close so I have no grip but I do have muscle strength. Mid Feb 2011, I started to get short of breath. I do have speckled ANA antibodies but that is it. Nothing else in my blood work is abnormal. They did 2 weeks of in hospital testing (Doppler of legs, vascular study, lymphatic study, CT stomach, Ultrasound stomach and liver, X-ray chest, Echo of heart, pelvic ultrasound, mammogram, CT brain). The doc are giving me prednisone to deal with the swelling symptoms but I think the drug has made me as weak as a kitten and raised my resting heart beat since being sick from 72 bpm to 115 bpm. I think the docs are on the wrong track. Not one doctor will agree to a body MRI. All the symptoms just came on too fast. I will be 50 this year. I am hoping someone out there can relate and share their answers....See Moremoonie_57 (8 NC)
7 years agomoonie_57 (8 NC)
7 years agomoonie_57 (8 NC)
7 years agomoonie_57 (8 NC)
7 years agomoonie_57 (8 NC)
7 years agomoonie_57 (8 NC)
7 years ago
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