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Old 11-25-2008, 01:31 AM   #1
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Mary Mae HB User
Swelling

Hi Everyone
I was not really sure where to post --- where I might get the most help.

I am a diabetic ----for almost 15 years.

In late August, I had a bad bout of edema --- in my feet, ankles, legs, up into stomach. For anyone who has had this, you know how uncomfortable it is. I am 47 and returning to college.

My drs. took me off of Metformin that I had been on for years. They also changed my BP meds from HCTZ to Norvasc. The swelling went down.

I saw a kidney specialist and she sent me for a renal ultrasound and a heart ultrasound. Took MANY blood tests. EVERYTHING was normal.

Now I am battling it again. This time --- we moved and I have a new Internist. They said the Norvasc causes swelling too. SO, I went back on a ACE - Lisinopril (my dr. had taken me off of it a few years ago).

The dr told me the swelling should go down within a week. That was 4 days ago. Due to the Thanksgiving holiday, college is closed this week. That helps a lot -------I am able to keep my feet up more and get more rest.

I was just wondering if anyone might have any ideas what could be causing this --- assuming it was not the BP med. I do not use salt --- past seasoning for flavor. I drink lots of water and tea sometimes.

If anyone has any ideas, I would really love to hear them.

THANK you and Happy Thanksgiving!!!!!!!!!!

Mary

 
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Old 11-25-2008, 04:32 AM   #2
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Re: Swelling

Hi Mary,

I'm all swollen up right now too. I'm 49 and I'm also back in college.

This isn't my first bout with the edema either. Mine started about march of 2007. I had a few tests done and was put on lasix as needed but it seemed to get quite a bit better on it's own about 6 mos after it started. That's about the time I was diagnosed as having chronic renal tubular acidosis but that shouldn't really have any bearing on it. I was diagnosed slow onset type 1 and put on insulin the beginning of this month. My sugar levels are fantastic right now. I saw my gp yesterday and it appears that possibly my natural sugar diuretic is gone and the original cause of the edema never went away, it just got masked. So now we're back on the hunt again.

The first order of business is to back off the sodium bicarb I take for the RTA and give it two weeks to see if the dam let's loose. Considering I wasn't taking bicarb when it originally started, I'm not so sure it's going to help. However, we have to start somewhere.

I know how you're feeling. It stinks. Feet up are great when there's time but when I do that, my butt gets huge. This really is frustrating as can be. I'm getting terribly tired of waddling around.

I wouldn't mind bumping heads together to see if we can't figure this out???

You don't think it's college, do you?

Helen

 
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Old 11-28-2008, 08:38 PM   #3
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Re: Swelling

Try eating fresh fruits and veggies, lean meats and chicken for 3 days. Walk briskly for 20 minutes a day. Stay away from anything in a box or can. No fast food. No anything but tea, coffee, water. I swear some of the "hidden" chemical ingredients cause swelling automatically. You might be surprised. Other than a side effect of a med, you can then rule out food preservatives.

 
Old 11-29-2008, 05:23 AM   #4
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Re: Swelling

Hey thanks for pointing that out. That's pretty much what my diet's been for the last 20 years or so. We live way out in the woods, far from the temptations of fast food and large grocery stores. I'm so totally with you on the preservatives and such. I've gotten so that if I don't cook it, I don't really wanna eat it and it's even better when it comes off our land. I'm not a total die hard about it but it's become habit and I figure it's good for me. I live a very healthy lifestyle. That's what floored me when I was told I was a diabetic. That's the last thing in the world I expected.

I'm not a big salt eater either. I don't salt my food and I don't cook with it either. I figure my hubby puts enough of that on his plate for the both of us. I really wish the gp wasn't going down that path. I think it's just going to be a waste of time. I'm one week into it and a pound of water heavier.

But my sugar level's are truly great! Averaged 110 over the last several weeks with no peaks and no valleys. I love that Humalog.

 
Old 12-06-2008, 03:08 AM   #5
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Mary Mae HB User
Re: Swelling

Hi guys!!! Thank you so much for the responses!!!!!'''

My swelling went down a little over Thanksgiving break -----which I figured would happen --- with more time to relax and "put my feet up". Come Monday --- back to classes and life, it was back!!!!

I am now taking a heavy duty diuretic --- zaroxolyn. It is 2.5 mg. She said that you have to be very careful about BP dropping too low and dehydration to the point of being hospitalized!!!!! And I take it 3 days a week.

I will be so glad to see this stuff end!!!!!!!!!!!!!!!!

Helen --- where did you swell? I am swollen in my feet, legs, stomach, and hands. I gained about 10 pounds each time. Lost it after I lost the water!

Honey, I think college is causing a LOT of things!!!!!!! Where are you at in college? My husband and I are just about to finish our first semester. Have you had any memory problems???? I sure have!!!!! It has hurt me a lot. Research says insulin can cause memory problems. My dr. added Novolog pen to my Lantus. I love it!! It may not help the memory, but I like the BS effects!!!!!!

I RARELY (once in the last 6 months) eat fast food. I don't add salt. I just don't know what could be causing this.

Helen ----please keep me posted on how you are doing and any changes, OK? Thank you!
Mary

 
Old 12-06-2008, 05:34 AM   #6
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Re: Swelling

Hello Mary,

Been wondering how you were doing.

Now who cooked your thanksgiving dinner? Feet up? Man, that musta been nice! I went to my folks and got to cook everyone's dinner. You weren't there in the crowd they invited, were you???

Ok. So you're doing a heavy duty diuretic. Is there a time frame on this? Are you supposed to pull the water off and then stop and see if it comes back? The thing about diurectics is they treat the symptom and not the cause. Now it is possible that you had a fluid shift that got stuck and the diuretic will sponge you out and things will be ok but I think it's important to know if that's going to be the case. From what I've been reading, edema without a cause is pretty rare once you get to be our age. That's reserved for the younger gals in their 20's and 30's. Has to do with the hormones. Once a woman reaches 45, they're supposed to look harder and not be so quick to just label it "idiopathic".

I think you'll feel a lot better during the search though. Is it coming off?

I'd have to say I swell all over. It always settles at the lowest point. By noon, it's usually from the ribs down. In the mornings, I feel a tad lopsided but awaken to find that I actually have boobs!. Well, at least one. The other thing is I evidently take up snoring when I'm swollen. I hear it's pretty bad. When I mentioned that to the gp the last time it happened, he sent his condolences to my husband. I've added another 3lbs since I stopped the bicarb so that makes 10. I'm small, 5'2" and lately had been running 100-105lbs. It's pretty noticeable.

I'm just finishing my first class. Final exam on wednesday. I only took one class to test the waters and fell in love with it. I love this online learning. I'm getting ready to jump in with both feet come first of the year. I found a self paced program where I can get my degree as fast or as slow as I want.

I was having major memory problems before I started the insulin. I was also having trouble with my coordination, speech and typing and couldn't pass a neuro exam. It was bad enough that the gp sent me for a brain mri. I've always had a really good memory and this was driving me nuts. Within a week, things started improving and now, I'd say I'm almost back to where it was. I've also got my sugar levels almost perfect now. They're staying very level. I think it was the wild swings that were messing with my head so bad.

I've been doing some research. I've become a compulsive researcher over the years. I deal with a lot more than just the diabetes. My major problem is I have a very rare form of hyperthyroidism that involves a genetic defect and am dealing with the effects of long term thyrotoxicosis. Only one of them being diabetes. But anyhow, there's some great sites out there that provide diagnostic flowcharts for the diagnosis of the causes of edema and chart the whole diagnostic path. Turns out I'm a prime candidate for pulmonary hypertension. I did have an echocardiogram done last year because of the shortness of breath but they couldn't measure the pulmonary artery pressure. Something about the study being "technically difficult". It was never followed up. One reason to always get copies of your labs and reports. I'm going to see if the gp will now be willing to followup and see if he can't talk them into trying a little harder and doing a little better job of it.

I had 4 toenails removed on monday. Big and second toe of each foot. It hurts. However, I did get to keep my feet elevated all day wednesday and got to see how skinny my legs really are. I think I need to put on some weight. I got back up on thursday and it all dropped again. Now I'm waddling with a cane. Not a pretty sight.

 
Old 12-11-2008, 08:03 PM   #7
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Re: Swelling

Just a little update. I saw the gp this evening. I didn't even have to mention it before he told me he thought it's pulmonary hypertension causing the edema. Man oh man, I wish I had been wrong.

So it looks like the only link to the diabetes is that the natural diuretic effect of the sugar had kept the edema down so that the issue wasn't pursued earlier.

 
Old 12-12-2008, 02:11 AM   #8
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Mary Mae HB User
Re: Swelling

Hi Helen (& anyone else who is reading!!!!!!)

Yes, thankfully, we went to my inlaws for Thanksgiving (2 1/2 hour drive). It will be the same for Christmas too!!!!

I have been taking zaroxolyn 2.5 (generic name is metolazone) since Dec. 4th. My dr. said to continue with the Lasix (40 mg a day) and my BP med lisinopril 40.

SO, what should my drs. be doing now to find out the cause for my edema???????? What is left to do? They did a renal ultrasound, the heart ultrasound (forget the name!), and the myriad of blood/urine tests.

What is left??????????

I am definetly feeling better since I started the new pills. I just wonder what is causing the edema. Oh my dr. did say I could try support hose. Do you have any experience with those?

My husband and I just finished up our finals this week. Now we are off for 5 + weeks.

What kind of plan does he have for you --- with the PH? Are you on meds???

I hope you are doing great!!!! I am back to bed to finish my nap --haha!

Thanks for talking with me. Really enjoying it!!

Mary

 
Old 12-12-2008, 06:30 AM   #9
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Re: Swelling

That's a long drive. My folks are only half an hour. Well, they were. They unexpectedly upped and booked for florida last week. That means a nice quiet xmas at home, alone with the hubby. I'm sure we can find something to do.

Did you get copies of your tests, the u/s and the echocardiogram? I'd feel very uncomfortable just dropping the subject. Simple leg edema could easily be attributed to venous insufficiency with "normal" test results but not generalized, dependent, pitting edema. And the reason I say "normal" is I never say they're normal til I've seen them for myself. I've seen more than my share of errors. If the lab work truly looks good, then I'd ask for a referral to a cardiologist just to be on the safe side and if they said not to worry, I'd probably feel better. I don't want to be an alarmist or anything but I should have jumped up and down a year and a half ago when that echo came back missing information. Instead, I hid my head in the sand even though I already knew that doctors are not infallible. I've seen more than my fair share of mistakes over the years.

I've never tried the hose. Have a friend who did. She couldn't stand them. She has venous insufficiency. Those are usually the treatment for that.

I'm glad you're feeling better though. That's one of the main goals. I can't wait to shed some of this water. I did a naughty and let the sugar creep up. Got rid of 3lbs since monday but that was only the 3 I'd gained over the weekend. I told the gp that and he giggled and said "ya know, you ain't supposed to do that?". I'd become almost immobile though and it was setting my bad nerves on fire.

I aced my final. Finished it and jumped right back in. Enrolled in a self paced independent study program. I can go as fast or slow as I want with very, very, very generous deadlines. I can have my AS degree in a couple months or take up to 6yrs to complete it. Enjoy your time off. I don't know what I'd do with 5 whole weeks. I've already taken a whole day off and already miss studying. That's something I thought I'd never say. I hated school the first time around.

We didn't make firm plans. He said he'd call in a week or so to see how things are going but we agreed we'd deal with it after the holidays and I might as well just keep the appt I already had on the 5th instead of going back in 2 weeks. I pick up my script for lasix this morn. Oh joy! He wants to get some of this water off me while he thinks and looks some stuff up. He's setting me up for a new echo. This time over in the "big city" where the newer equipment is. He's going to talk to the tech and tell him that he wants a good view of the right side. The ekg he did yesterday showed right atrial enlargement and he wants them to look at that and get a good pressure reading. He did say that he's hoping this is going to be more of just an annoyance than anything. Fingers crossed here. They've got all kinds of new treatments now. One of the newest one's viagra. Hey, maybe we can make things interesting.

I'm actually doing ok. The toes are finally starting to feel a little better. I even got shoes on long enough to get to work yesterday. Put em back on to come home. They're taking their sweet time of it though. I've noticed that I heal a lot slower now since the dirty sugar word came up. See guy's, I am talking about diabetes here. Don't want to stray too far off topic.

That's the other thing. With you being a diabetic, you need to watch for microvascular changes from the diabetes. Another good reason to see a cardiologist.

I enjoy talking to you too. Didja have a good nap?

Helen

 
Old 12-16-2008, 02:36 AM   #10
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Mary Mae HB User
Re: Swelling

HI!!!!!
NO! I sure didn't get copies of the tests -----do I need cds of them (or whatever) or is written reports ok??? I do have the report on my blood tests. It looks all normal to me. Anything special I should look for?

You would not believe how I was treated at the Nephrologist!!!! Oh to begin with everyone was just so sweet. But, my old dr. was not sending the test results they needed --- they were waiting on a fax from them. Now, instead of calling me or even telling me when I got to the office ---- they waited about half an hour past my appt. time and then after I was in the room, they tell me!!!!!!! Well, I know my drs. office and I knew how to handle it!!! I got on the phone and told the nurse that my drs. there (one of them is the Clinic Director!!!) wanted me to see a specialist and to send the paperwork. She was like "well, I will have to ask the nurse" -- I said and let them know that Dr. ....... and Dr......... want this done. I'm telling you it wasn't 5 minutes before that was faxed.

But, that was nothing --- I had to call them to find out about the test results. They did not care==== the dr. I saw said that the other dr (clinic dir.) makes the follow up appts and he would call. Never did.

It was truly like, gee we can't possibly get anymore money out of you (because she ran tests for every disease in the book!!!!!) so you are no good for us anymore!!!!!!!!!!!

I have officially lost all my edema weight!!!!! Yay ------God, it feels so much better!!!!!!!!

Do you mind me asking through what school you are taking courses and what kind of courses are you taking? I have thought about taking a independant study course but have not yet.

Well, we just moved here the last week of July, so I still have organizing to do. I have not felt well in a while. I also have sleep apnea and needed a new machine. Well the hospital here did a new study and I finally got my new machine last week. I am starting to get used to wearing it again and last night I got my first night of true sleep without waking up. So I feel good today.

WOW, they use viagra for everything, huh///////// Maybe that is what I need!!!!!!!

So are you STILL dealing with edema????? Bless your heart. People who have not had it have no idea. It is awful. And I cannot imagine having it really bad.

Well it is time for another nap ---hahaha====== I really slept good yesterday ==== my husband works nights, so we keep crazy hours around here.

I have to see the Nurse Practioner today. I love her!!! I have an owie on my hand and I put some ointment on it and covered it with a bandaid --- a small round one. Then I got a small round cluster of blisters!!!!!! So, it is looking rough!!!!! Thought I had better get some antibiotic. I rarely, I mean rarely use it so I figure it is safe for this. I just figure that is what they will prescribe ---who knows. I will try to remember to ask her about the tests/edema situation.

Take care of yourself. Talk to ya later.
Mary

 
Old 12-17-2008, 05:42 AM   #11
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Re: Swelling

Well howdy!

You sound awful chipper.

The written reports usually suffice. And make sure you have a complete set of all labs. They're really hard to understand at first but over the years, I've kinda learned what the stuff means. When I don't understand something, I either ask or look it up. One thing I've found is trying to go back later and get them is a lot more difficult than getting copies as you go. It's important to have a full set of your medical records. You never know when something might be important. I also take a copy of the most recent labs and reports and anything else that might be pertinent to any referrals. That way I don't have to play that game that you just did. Things often don't end up where they should.

Don't get me started on non-faxed reports, bumbled tests, lousy attitudes and all that other stuff. I could tell you some real horror stories. Oops. I was just about to start a tirade. I ain't going to do it. I did finally get a call that the echo's scheduled for tomorrow. I get really annoyed having to constantly stay on top of things, making sure things get done and that when they're done, they've been done right. I'm ill. I shouldn't have to put up with that crap. I'm paying them to take care of me, not for me to do their job. A little of it is a money thing like you say but there's also a lack of compassion for all the stuff the patient is going thru. Nobody seems to care anymore. To them it's become just a job. The medical field is not just a job, it should be a way of life. Oh well. Couldn't help it. Had to put on just a little tirade.

I'm almost there too! Just a couple more pounds to go to get rid of the last of the squish factor. There's only a little denting now. I'm like you. I absolutely can't stand the feel of it. Something about water is terribly uncomfortable. But now I'm starting to see the bones again and thinking, wow, I gotta put on some weight.

Penn Foster. I've been working on a degree as a medical assistant. After I'm done, I'll go somewhere else to get a certificate in patient advocacy. I'm the kind of person who not only gets annoyed about things but I try and do something about it. There have been times that I have been so ill and ended up just beating my head up against the brick wall of the medical system trying to get help that I've almost given up. And I'm not just talking short periods but years at a time. That's not fair. I think I'd feel good being able to help other people thru it. Besides, I like to stir things up. I can't wait to be able to be in an official position where I can ask "why wasn't?", "why hasn't?" and just plain "why?" and then actually be able to do something about it.

Hmmm. Interesting tidbit of information there. I've been doing a lot of reading lately. Sleep apnea is a treatable cause of pulmonary hypertension. It has to do with the lack of oxygen. The high pressures will often only manifest at night while you're sleeping and often is overlooked. It will cause edema. You say you've been without your equipment for a while??? I'm going to place a little bet here. That machine is going to help with your edema. But you'll also need to talk with your doctors to keep things watched carefully and under control if that's the case. The other thing is if that turns out to be what's causing it, you should do quite well.

I'm developing a bad psoriasis flare in one of the big toes. That sometimes happens when you do something that damages the skin. Darn things turning into a mess. I was hoping it wouldn't do that. I sorta told the only in-network dermatologist what I thought of him and his almighty attitude when he made a huge, ignorant boo boo after refusing to listen to me and I don't think I'll be welcome back. What to do? What to do? I can't see driving 2 1/2 hours to see the ortho cause I don't think she'll know what to do about it. She'll just tell me to go see a dermie. Maybe I'll just scream instead.

You enjoying your break from school? Did you get your hand taken care of? Are we talking up a storm?

 
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