Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

High pulse and feeling awful

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by Jemima37, Jun 7, 2017.

  1. Jemima37

    Jemima37 Senior Member

    Messages:
    133
    Likes:
    137
    UK
    Recently I have been in a crash state for about 8 weeks. Daily I feel my heart working hard even when I am sat down. It's about 80 on sitting, used to be lower. Some days it can be in the 70s but on bad fatigue days around 80 sat. Soon as I stand up it jumps to well over 100 and i feel awful.

    Today is a typical bad morning. Not every day is this severe but I get a few a week this bad. Where I have to keep sitting down between making breakfast and packing kids bags for school as I can feel heart hammering and I feel dizzy and breathless. Makes me feel so awful and I have a strong urge to lie down. I sat on a seat in the dining room to have a drink and break this morning and pulse was 118 and lowest it went after 10 minutes sat was 100. I could feel it fast. It makes me feel hot and awful.

    Once the children left for school I dreaded walking upstairs so crawled up and once on my bed I felt dizzy and so exhausted.

    Thank goodness it's not this bad daily but I get a few a week this bad. Is this like POTS? I daily have the fast heart but my friend said it sounds more like deconditioning and nothing like POTS. I was doing less activity last year and never had symptoms daily this bad. This year my fatigue worsened and with it the heart symptoms worsened. I do about 4-5k steps a day. My fatigue worsened since April after 2 better weeks and ever since been in a long crash and these heart symptoms which make me feel worse.

    I don't have any pain or anything or palps.

    I have agoraphobia and all this scares me incase I need to go to have an ECG or tests for POTS.

    I have had chronic fatigue over 18 months, GP suggested CFS twice but won't officially diagnose as I had a thyroid result out. Which is now being treated and within range. The fatigue has continued and still he has given now answers. He is leaving and I am being transfered to a new GP this month. Maybe I will get somewhere with her.

    Julie
     
  2. Silencio

    Silencio Senior Member

    Messages:
    171
    Likes:
    588
    It sounds like pots me me. If your HR goes 30 higher from seated to standing, that means it's POTS. You're going 38 higher from 80 to 118. Pots or orthostatic intolerance can manifest a bit differently for ME patients, so you don't need to be passing out to have that diagnosis, and since this is very much part of the picture of ME/CFS, you should report to your doctor and it should aid in the diagnosis. It's not deconditioning. It sounds like for you, this is a crash. I think you need to cut your overall steps per day, as much as you can, down to 2000 if you can. And rest as much as you can to get out of this crash. Then figure out your anaerobic threshold and try to always stay under it, i.e. lie down when you are coming up to your AT. Then you can figure out what your envelope is when not in a crash, and work to see if you can expand it safely stepwise from there.

    There's a great FB group called ME/CFS -- pacing with a heart monitor, if you need help figuring things out.
     
  3. Mary

    Mary Senior Member

    Messages:
    2,803
    Likes:
    6,282
    Southern California
    @Jemima37 - you might be low in potassium. Low potassium has been associated with tachycardia and other cardiac symptoms.
    http://www.livestrong.com/article/540722-tachycardia-potassium/

    People with ME/CFS tend to have low intracellular potassium despite normal blood levels. Low potassium caused severe fatigue for me. Read the first post in this thread where Richvank talks about potassium and people with ME/CFS: http://forums.phoenixrising.me/inde...ded-in-methylation-treatmt.18670/#post-291410

    An easy thing you could try to see if it helps would be to get some high potassium foods like low-sodium V8 (or generic brand - the low-sodium type has more potassium than regular) and drink several glasses throughout the day. If your problem is low potassium, I think this would start to make a difference. It might take a couple of days. One banana is probably not going to resolve it.

    I have to take 800 - 1000 mg potassium gluconate daily (in divided doses) in addition to whatever potassium is in my food, but I do well with this. I had symptoms of low potassium for several years but never knew what it was until I started methylfolate which caused my potassium to tank badly, and from reading Freddd's posts about methylation, I was on the lookout for low potassium, it's a long story. I haven't had that awful fatigue for a long time now.
     
  4. arewenearlythereyet

    arewenearlythereyet Senior Member

    Messages:
    1,478
    Likes:
    7,572
    Hi @Jemima37 . I had a GI bug in March which gave the same effect that you describe. My base rate is around 58 and for 2 days I had the worst symptoms from the infection my heart rate went up to 95-100 all day just sat still or lying down. This lasted for 2 days, but the fallout was that I had very little energy for the next 6-8 weeks where any activity would make my hr shoot up much quicker than normal.

    I'm back to "normal" now but understand how annoying this is. Be interesting to hear what others say. I haven't gone down the pots route yet but I'm gearing myself up to see my GP. I guess the dehydration from the GI infection didn't help but it seems a bit weird.
     
  5. mdb55

    mdb55

    Messages:
    5
    Likes:
    8
    This sounds like POTS, or Inappropriate Sinus Tachycardia. There's some overlap. Beta blockers can help lower the heart rate and improve some of the symptoms that come along with tachycardia. I've found that a low dose helps significantly and makes it so that I'm more comfortable being upright. ("Less is more" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2758650/).
     
    Last edited by a moderator: Jun 8, 2017
  6. Jemima37

    Jemima37 Senior Member

    Messages:
    133
    Likes:
    137
    UK
    Thank you all.

    I did wonder if it could be POTS.

    It isn't potassium, I had that tested last week and it's fine. Electroyltes normal.

    I shall be mentioning the heart issues to my GP. Some days it's worse than others for sure. Some days I can walk about and heart doesn't beat as hard then others it does and I struggle to walk around the house.

    Thank you

    Julie
     
    Silencio likes this.
  7. Mary

    Mary Senior Member

    Messages:
    2,803
    Likes:
    6,282
    Southern California
    @Jemima37 - my potassium levels were always in the normal range on blood work, but I was still low in potassium. People with ME/CFS can have normal blood work, but the potassium inside the cells (not in the blood) can be low and this will not show up on blood work. If you look at the thread I linked above, you'll find an explanation for this by Richvank, who was extremely knowledgeable about many things related to ME/CFS. Unfortunately he died suddenly a few years ago.

    Low-sodium V8 or vegetable juice (drinking several glasses throughout the day) or some other high potassium food or drink is a safe and simple way to find out if this is at least part of what is going on with you. My fatigue was severe off and on, even before I started Freddd's methylation protocol and I never knew what it was until I learned about potassium.

    Also, potassium can be helpful with POTS.
     
    Jemima37 and arewenearlythereyet like this.

See more popular forum discussions.

Share This Page