CFS and funky ankle swellings ???

Discussion in 'Fibromyalgia Main Forum' started by Lillie17, Dec 14, 2008.

  1. Lillie17

    Lillie17 New Member

    Have any of you with ME/CFS gotten strange edema like swellings around your ankles (especially when standing). My once lovely ankles now have egg-sized swellings around
    the outer side of the ankle. Different from the all around swelling like one would get with

    Anybody else?

  2. munch1958

    munch1958 Member

    I think I transmitted my Lyme disease to him. He's had an X-ray which was normal and seen his PCP. I booked an appointment with a podiatrist for him. If that doesn't help he may have to see a vascular surgeon.

    Have you seen a doctor? Had any tests?
  3. TeaBisqit

    TeaBisqit Member

    My latest thing in the last few years is the top of my feet swell up so badly that I can't wear shoes and end up having to wear slippers. My ankles do swell up and sometimes all the way up through my knees I get swelling. The thing is, my worst symptoms come from NMH/POTS with severe lightheadedness, so I can't really take diuretics for this. I just try to put my feet up whenever I can.
  4. wendysj

    wendysj New Member

    Yes, both of my legs were swelling so badly it was getting harder to walk. I went to see a vascular surgeon and he did an ultrasound on my legs. Found out that I have leaky valves in my deep veins and blood was pooling in my ankles. I had a surgery to correct the problem but it didn't help. I have to wear super tight compression hose everyday now.

    Before that, I found out I had blood pooling in my abdomen. I had three or four procedures to get that corrected.

    Also, my hands have been swelling for 3 or 4 months now. Yuck. I hate it...

    Good luck with your swelling.

  5. hensue

    hensue New Member

    Maybe i should seed out a vasculor doctor and see what he says it feels like all the blood pools there.
    Every time i called it a flair my legs and and ankles swell really bad. This has always been real strange to me.
  6. gmom605

    gmom605 New Member

    oh yea , i went to so many dr`s until i found one that he

    said i was having problems with my artries so he send me

    to get a {mra} to be sure and sure enough he was right

    but i wasn`t hurting no where only my ankles would swell

    up they look like donuts around my ankles and would hurt

    to walk and stand my legs hurt so bad i couldn`t stand it

    nomore so they found that i had 70% blockage toward my

    kidney so they put a stent my swelling has gone and i`m on

    plavix 75mg. every day gmom,,take care

  7. findmind

    findmind New Member

    You know, I read this, and I has just finished reading an article sent to me by Science site, which talked about DIASTOLIC heart failure.

    We all have heard about Systolic or Congestive Heart Failure, which means your blood doesn't pump out of your heart normally.

    Diastolic Heart Failure is when your blood doesn't fill your heart fast enough, so blood pools in other lower areas of the body.

    Dr. Paul Cheney, in his article posted on the Dallas Ft Worth CFIDS Support Group site, stated that many people with CFIDS (FM?) have this and it gives us that feeling of "I have to lie down right now, or die", and lying down can actually save our lives.

    There is a test called an Impedence Cardiograph that can diagnose this in 30 minutes; it's non-invasive and measures the blood inflow problem, if it exists. Call 1-800-555-1212 and ask for their CA tollfree number, give them your ZIPcode, and see if they have someone in your area giving the test. It's about $120 and involves tests while lying down and then standing.

    A good cardiologist must then be consulted with the results. They are so used to seeing Congestive Heart Failure (Systolic), and are just now getting around to recognising Diastolic Heart Failure.

    Any swelling of the lower legs, feet, ankles, etc., should be carefully evaluated.

    NMH/POTS may be found someday to be caused by Diastolic Heart Failure, I believe (IMHO). Who knows?

    I have no swelling, just neuropathy, but my CT scan of veins and arteries were "amazingly normal for a woman your age" they said.

    Hope all here make sure their drs are on top of this problem: it can be serious.

    Mucho huggies,

  8. wendysj

    wendysj New Member

    Thank you for all of this information. I will be sure to keep a close eye on this... I did speak to my Dr. last week regarding sleeping after I excercise. She said, "if that were the case, I would have killed hundreds of FM/CFS patients over the past 25 years". She obviously didn't take the heart failure theory seriously. I may have to see my GP and ask him if I should have another work up from a Cardiologist.

    Thanks again!

  9. gmom605

    gmom605 New Member

    for more replys!

    take care gmom,,,
  10. ulala

    ulala New Member

    DIASTOLIC heart failure. I've attached a link to clinical trials relating to this. Some very interesting trials listed.
    [This Message was Edited on 12/23/2008]
  11. stinker56

    stinker56 New Member

    I know what you mean. I get them ever so often and don't know why. I can actually feel my feet and ankles swelling and sometimes my right calf will swell too.

    I asked my rheumy about this and even took pictures showing it at it's worst and he didn't seem in the least worried about it. He suggested I wear compression stockings which help somewhat but when you take them off they still swell.

    I have had two ultrasounds done on my right leg by my regular doctor and both showed no problems but something is causing it.

    Hope yours is better and you get some answers soon.