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Hi everyone, I had sudden severe edema flare up 1 1/2 yrs ago. Recurs ever 2-3 mos. Help!

Posted , 4 users are following.

cindi1214
cindi1214

I am a new follower of this forum and recently registered so as to become part of your discussions.  So far, so many of you describe my symptoms to the 'tee', but we are all at a loss as to what is causing it and how to prevent it.  It started suddenly 1 1/2 yrs ago, with a left foot that became sore, and more and more sore.  Within a few days, it had become very painful, red, burning to where I could not even touch my skin.  I went to the doctor and she said she didn't know, but was probably nothing to worry about.  Since then, the flare-ups have come regularly about every 2-3 months, getting worse each time, both feet and up the ankles.  The whole episode from start to finish is approximately 3 weeks.  My skin gets shiny, beet red, and is difficult to walk.  The swelling makes my feet TWICE as big as they are.  I cannot even put on any of my shoes at the height of the flare-up, only large slippers.  I have shown my doc pictures and she still doesn't seem overly concerned.  It is absolutely HORRIBLE and puts me out of commission each time.  I have read your posts, and have some things in common.  I live in the mountains of Colorado, so it is not heat related.  I do not have diabetes.  I love salt, but always have and this just began in my life and I am 60.  I have had no tests or referrals.  I realize a second opinion is overdue, but she manages all of my meds and 2 upcoming surgeries I am going to have to have.  I went to the Spine doc last week to discuss the cervical disc which is going to be replaced, and it took him 5 minutes to find a 'faint' pulse in my right foot (after seeing the horrendous edema).  He said, "She IS taking care of this, right?"  When I said she did not seem concerned, he said he wanted a CT Scan right away and she needed to arrange that.  He mentioned CHF, which I had already read about on the Internet.  He is VERY concerned, and now I am petrified.  I am not overweight and used to work out regularly, cannot now, however, because I also have a blown out R knee which has to be replaced, and can hardly walk, causing me to gain weight!  I am SO upset that this is happening to me--I do smoke (I know, bad bad--its been a very bad habit for 45 years and seems to be something I just can't get a handle on--so addicting, but I am trying.), so I am torn:  worry?  don't worry?  

If anyone has any suggestions or feedback, I would surely appreciated the direction.  I think my spine doc is jumping on this, so I will return to our forum with feedback which may help anyone else.  SO VERY VERY FRUSTRATED!  Plus, summertime is shorts, bermudas, capris and leggins around here--all of which show the extreme ugliness I feel.  I can't get in to anything but shorts or dresses--capris and thong sandals won't even fit!

Thank you, I am so glad to find out I am not alone in this!  I'm not sure how one gets a notification if I receive a reply, does it show me I have an email on my computer?  I would like to know immediately if someone is responding to me.  smile  Thanks again!

0 likes, 5 replies

5 Replies

  • sally14335
    sally14335 cindi1214

    Posted

    Hey, actually, I applaud you!  You are doing a lot of "right" things.  I know, you hate to leave the gp who is and has been in charge of your meds but, you may need another opinion and a transfew since he/she is not interested in this swelling.  Thank goodness for the doctor, the spine man (?) I think, who was concerned!  Stay with him and his suggestions, do those tests and you may find some answers.  For me, I've visited the heart doctor, the kidney specialist and all I get is, it is my vericose veins.  Support hose they say, and I cannot stand them, bought the knee type, hard to get on with a bad lower back and I have fibromyalgia which objects, strongly to any tight band.  I end up with a deep, red ring which hurts and stays overnight!  Enough, too much, of me.  As I said, I applaud you.  Stay right in there and keep on this and you will find people who will help - " not concerned " about somehting that upsets you this much, and should, is not an acceptable answer from your doctor!  Let me know how you get along, I care!

    • cindi1214
      cindi1214 sally14335

      Posted

      Thanks, Sally.  I, too, have bad vericose veins, and had one stripped about 13 yrs ago.  I believe there is a correlation.  But I also had a toe surgery on the other foot 3 months before the first flare up, year and a half ago.  And that was the only limb affected, the first time.  It comes and goes every 2-3 mos, but bilaterally now.  I agree, my PC should have been concerned when I told her about this a long time ago, have showed her pictures and have had a visit during the 

      attack, especially because all you have to do is enter the symptoms and Google it, and CHF is always present!  I don't get it, but she put in an order for a CT Scan, having it Monday.  It should at least show the blood flow/restriction.  I really just want to know if I can prevent this--I'll do anything!  During the worst time, in the middle of the flare-up, I have nothing but an old huge pair of slippers I can wear!  Nothing else fits!  I'm at least 2 sizes larger.  And the stockings--all that's happened when I do that, is everything else swells up around it, I've had to CUT them off, cause it was obvious that it was cutting off my circulation!  I'm more worried than anything, I feel like maybe I'm a ticking time bomb.  But I hope to have something to report soon.  I get the back thing, I've 3 back surgeries.  Fortunately, my lower back, anyway, hasn't given me any trouble, yet.  My cervical discs, however, different story.  I have 2 titanium discs in C4-C5 and C5-C6.  Been great for 4 years, till a month ago.  Arms started aching and now I can't brush my hair without pain pain.  I pray its not going to worsen, cause I am scheduled for a complete knee replacement, that I've been waiting for over a year, in December.  Without good strength in my arms, it can't happen.  Was reading up on it today, and as long as the pain that radiates down the arm, cause those discs control that area, doesn't last for more than 6 wks, it should subside on its own.  If not, they'll be doing my neck first.  Not scared--easy recovery.  The knee, however, is a different story--long recovery and strong arms are suggested (I had the other knee done already, I know what I'm in for).  As you can see, I'm rather a mess.  But somebody will put Humpty Dumpty back together again!    Keep up hope!   Thanks for the response!

  • john79764
    john79764 cindi1214

    Posted

    Thank you so much

    I am a male 69

    And I read your experience

    I'm not as bad but yes my toes and feet , ankles calves are elephant size

    No pain yet and there not red .... yet

    But I noted the indifference of your doctor

    I'm in Baltimore and my dr is very much concerned

    She scolds me about salt, Greek olives , and feta cheese

    Being Greek salt comes natural , everything we eat is dipped or washed in salt

    I'm very sedentary

    Like to sit , am retired

    Had open heart valve replacement 3 years ago

    Weigh 303 lb

    Tired most of the time I sleep

    With my feet DOWN

    If I raise them above my heart I'm dead

    Can't do that ! I use compression socks leave them on day and sleep with them at night I even go swimming with them my feet are not red and my doctor says my sugar is good last reading was 102 so what is the worse that could haven to me

    Please tell me

  • mike31666
    mike31666 cindi1214

    Posted

    Try an allergist, and google it for the various types of angioedema and symptoms. Good luck. Antihistimes eoulk for my throat and Advil/ibuprphen helps with the feet and hands. I take 2 benydryl and 4 advil
    • john79764
      john79764 mike31666

      Posted

      Mike listen to me .. elevate your feet 

      Make sure you have a pair of compression socks

      At Walmart they sell for 20.00 anywhere else they go for 59.00 or even 69.00 

      In the morning your feet should be normal size  ... rub some antifungal cream between your toes .... Dollar Tree has a tube for a dollar

      Slip on the compression socks

      Hard at first ... you will get used to it

      Leave your socks on two days as long as you can  ... to give your veins time to strengthen 

      I live in my socks ... literally 

      My legs  my feet  looks like a kids  at 20 

      Really, I’m not lying  

      Do what I said

      You will dance and thank me 

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