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Unusual symptoms - looking for some verification

Discussion in 'General ME/CFS Discussion' started by Legendrew, Jan 7, 2014.

  1. Legendrew

    Legendrew Content team

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    I just wanted to get a feel as to whether and of these symptoms are usual or unusual for ME/CFS. I'm looking into POTS currently and wondered whether these symptoms are more indicative of POTS or ME/CFS. I put it here as i'm not sure which sub-forum in the symptoms category to use.

    Frequent urination (both day and night)
    Increased thirst (likely responsible for some of the urinary frequency)
    Hypoglycemia (not sure if it's 'normal' or reactive)
    Very frequent headaches (often eyebrow type headaches and migraines - often a little better upon lying down) Also wake up with these sometimes.
    Swollen lymph nodes (both underarms, one side of neck and behind one ear) - seem to swell and then go down
    Internal tremor type feeling at night-time upon lying down, particually in the legs- sometimes comes with numbness and cramping
    Muscle aches and joint pain - comes and goes
    Symptoms often worse when I have any other illness (colds etc) - always get acid reflux when I get a cold now
    Heat intolerance - often causes bad headaches and blurry eyes. I suffered vertigo once, related to walking in warmer weather.
    GI, IBS type symptoms - sometimes constipation and sometimes the opposite. Also stomach pain sometimes.
    Stress intolerance - symptoms seem a lot worse when i'm stressed - particularly GI symptoms
    I also seem to get bouts of proctalgia fugax after exercise and sometimes testicle pain - both get better after a short while.



    The thing that confuses me is that I don't seem to get the terrible 'crashes' that I hear so much about, after exercise and exertion I feel a little rubbish but I'm not laid up in bed for days on end. Rather, I just feel a little achy and rubbish overall, I can however still get up and go out sometimes.

    My onset was likely the most unusual thing, following the vaccination which triggered everything, my major symptom was relentless nausea and vomiting (causing weight loss) and general malaise, often with me feeling lightheaded and headaches. This nausea finally stopped after around 4 months however I am now left with the rest of the symptoms which came on more gradually.

    If there's one thing i'd like to know is whether swollen lymph nodes can be a symptom of POTS as I personally think many of my symptoms are more consistant to POTS.
    Last edited: Jan 7, 2014
  2. lansbergen

    lansbergen Senior Member

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    Mine was mild in the beginning after the worst "flu" ever but went to very severe over the years.
  3. rosie26

    rosie26 moderate ME

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    Regarding PEM, it might be that you are in the mild stage of ME ? I was having symptoms of ME up to 10 years before I collapsed. During these 10 years I was able to work.

    I had thick unwell feeling in my neck/throat gland in my severe years and severe exhaustion with it, so bad I could hardly eat or talk and it does add to the nausea. My glands were not visibly swollen though but as I say they felt very swollen.
    You sound like you have had that particular symptom very bad. I notice a lot of us have different areas that get hit harder. Some get hit hard in the gut, others Chronic Sinusitis, severe head inflammation etc. We can have areas of more sensitivity.

    I had acid reflux at onset, I think it was to do with the revolting toxic stuff coming out of my sinuses.

    I wonder Andrew if that onset vomiting nausea was part neurological, I had a shocker of a year in 2012 where I was waking with retching/needing to empty my stomach. I had 4 big stressful things happen that year and it really took a toll on my ME, I can't take anything stressful as it stirs up my neurological system - the sensitivity thing.
  4. Ambrosia_angel

    Ambrosia_angel Senior Member

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    Well I wouldn't call your symptoms "unusual". Your onset doesn't seem unusual to me either. You could have got a foreign tummy bug which triggered of your ME. Mine was triggered by an infection and no stress. Very sudden too. Everyone with the ME/cfs diagnosis is extremely different from one another so I would say typical ME symptoms to be honest.
  5. ukxmrv

    ukxmrv Senior Member

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  6. SickOfSickness

    SickOfSickness Senior Member

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    I have all of those listed, in some form, except for increased thirst. Also while I feel like I have hypoglycemic symptoms when I don't eat very often, I had a 24 hour GTT which said I don't have blood sugar problems.
  7. taniaaust1

    taniaaust1 Senior Member

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    Frequent urination (both day and night) - Could be POTS (suggest increase salt)

    Increased thirst (likely responsible for some of the urinary frequency) - Could be POTS (due to low blood volume)

    Hypoglycemia (not sure if it's 'normal' or reactive) ME thing or it could indicate Insulin issues some ME specialists have found insulin problems more common in us. Hyperinsulinemia (high insulin) can drop the sugar. Think about getting a 2hr Glucose tollerance test with the insulin levels included.

    Very frequent headaches (often eyebrow type headaches and migraines - often a little better upon lying down) Also wake up with these sometimes. Could be POTS esp since a little better upon laying down. ME too of cause.

    Swollen lymph nodes (both underarms, one side of neck and behind one ear) - seem to swell and then go down ME.

    Internal tremor type feeling at night-time upon lying down, particually in the legs- sometimes comes with numbness and cramping ME

    Muscle aches and joint pain - comes and goes ME (often joint pain wanders)

    Symptoms often worse when I have any other illness (colds etc) - always get acid reflux when I get a cold now
    That's an interesting one, I havent heard of reflux on getting cold before. (insulin issues commonly cause reflux)

    Heat intolerance - often causes bad headaches and blurry eyes. POT or ME

    I suffered vertigo once, related to walking in warmer weather. ME (not sure if POTS can do that or not)

    GI, IBS type symptoms - sometimes constipation and sometimes the opposite. ME or POTS .. the peristalisis of the intenstine is affected by the autonomic system so dysautonomias such as POTS can affect

    Also stomach pain sometimes. most likely ME

    Stress intolerance - symptoms seem a lot worse when i'm stressed - particularly GI symptoms POTS or ME stress affects both

    I also seem to get bouts of proctalgia fugax after exercise (Ive no idea what that is)

    and sometimes testicle pain - both get better after a short while. (no idea)

    As you can see from above POTS can cause lots of symptoms too.

    "The thing that confuses me is that I don't seem to get the terrible 'crashes' that I hear so much about, after exercise and exertion I feel a little rubbish but I'm not laid up in bed for days on end. Rather, I just feel a little achy and rubbish overall, I can however still get up and go out sometimes. "

    That doesnt mean much, only that you may not have ME as bad as many others who crash more severly. Think yourself fortunate. ME will cause crashes.. milder ME, milder crashes . POTS dont cause a next day crash, only if you have ME.

    "My onset was likely the most unusual thing, following the vaccination which triggered everything, my major symptom was relentless nausea and vomiting (causing weight loss) and general malaise, often with me feeling lightheaded and headaches. This nausea finally stopped after around 4 months however I am now left with the rest of the symptoms which came on more gradually. "

    I think there are lots of ways this illness manifests esp at beginning of it in which I hear much more variation till it like settles in one can say. It starts off a certain way and then often stabilises to ways we are more alike.

    "If there's one thing i'd like to know is whether swollen lymph nodes can be a symptom of POTS as I personally think many of my symptoms are more consistant to POTS."

    . as far as Im aware that is more ME. You could have more major POTS but very very minor ME. Thou viruses can cause POTS (and of cause one can get wollen lymph nodes if one was having a viral reaction thing).

    From your symptoms due to you also have several ME ones which dont really suggest POTS, I do think you have ME (thou could certainly have POTS too which headaches getting better as soon as you lay down suggest dysautonomia eg POTS rather then ME. A ME symptom which isnt dysautonomia, doesnt usually feel better as soon as one lays down... with ME stuff if anything its still worsening when one first lays down due to delayed ME reactions. One can be laying with it getting worst and worst due to overdoing things. Any sudden symptom improvement just on laying suggest OI issues eg POTS.

    From your post, I wouldnt doubt that you have ME, your case sounds fairly typical for a minor case of it. Dont think you arent severe enough for your more minor crashes to be ME.. look more at the picture of your whole symptom complex. ME cases thou we are different in some ways, we are all very alike. Its a quite distinct illness (even before people start being tested and getting everything ruled out).

    Its great that you considered the possibility of maybe just having POTS. I think not enough people are doing that and there is probably many that that is all they have. It would be easy to confuse for those who arent familar with ME and POTS.
    Last edited: Jan 8, 2014
  8. taniaaust1

    taniaaust1 Senior Member

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    You say you got sick with vaccination.. those symptoms make me think of poisoning. Maybe you were poisoned in some way from the vaccine? which then damaged your system or some system in some way? allowing you to get the ME.
    Last edited: Jan 8, 2014

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