The 12th Invest in ME Research Conference June, 2017, Part 2
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MEA website survey on sensory symptoms (pins and needles etc) - March 2017

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Mar 3, 2017.

  1. charles shepherd

    charles shepherd Senior Member

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    MEA website survey on sensory symptoms (pins and needles etc) - March 2017

    Vote via the home page of the MEA website:
    http://www.meassociation.org.uk

    Overseas votes welcome in this month's survey

    Current responses:

    • How often do you have sensory symptoms in the skin such as 'pins and needles', loss of sensation, or pain on touching the skin?
      • Constantly (13%, 6 Votes)

      • Frequently (47%, 22 Votes)

      • Quite often (13%, 6 Votes)

      • Occasionally (19%, 9 Votes)

      • Never (9%, 4 Votes)


        Total Voters: 47


    WHY ARE WE ASKING ABOUT SENSORY SYMPTOMS IN THIS MONTH'S MEA WEBSITE SURVEY?

    There are a number of neurological symptoms involving sensation - patchy loss of sensation, increased sensitivity to touch/pain, unusual sensations/paraesthesiae/'pins and needles' - that can occur in ME/CFS.

    However, it is sometimes very difficult to know whether they are part of ME/CFS, or a sign of another medical problem

    Other causes of sensory symptoms include vitamin B12 deficiency, diabetes, hypothyroidism (low thyroid function), MGUS/monoclonal gammopathy of unknown significance and Sjogren's syndrome

    These conditions can all cause fatigue and other ME/CFS like symptoms

    Sensory symptoms can also occur in anxiety and when people over-breathe/hyperventilate

    Reliable source of more detailed information:

    http://www.nhs.uk/Conditions/Peripheral-neuropathy/Pages/Causes.aspx
    So it is important to properly investigate these symptoms, especially where they are more pronounced or have more unusual features

    The investigation of sensory symptoms in ME/CFS is covered in more detail in the Investigation section of the MEA purple book

    If the problem continues, and a GP cannot provide a satisfactory explanation, a GP could make a referral to a neurologist for a more thorough clinical assessment and investigation

    Dr Charles Shepherd
    Hon Medical Adviser, MEA
     
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  2. Chrisb

    Chrisb Senior Member

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    I think there should be a "Don't know" category for those who have sensory symptoms which cannot be definitely located in the skin, or is this question not about the generalized buzzing sensation which may be from muscles?

    I don't feel I can give an answer to the question.
     
  3. charles shepherd

    charles shepherd Senior Member

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    It is really about abnormal skin sensations, or loss of skin sensations

    C
     
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  4. Hutan

    Hutan Senior Member

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    Thanks for giving this topic attention. But it's difficult to give an accurate answer about frequency that is not qualified.

    I have a permanent loss of sensation around my left ribs - but that is due to shingles and predates my ME.

    I also get a very distinct feeling like warm water being poured over my left foot. But I can go several weeks without that happening and then it can happen a dozen times a day. Also, it started a couple of years before the ME started so it may or may not be related.

    Currently about once a week I wake up in the middle of the night or in the morning with a completely numb hand that does not work. At other times, it can be more frequent, at other times less frequent.

    If I drive for more than about 15 minutes, I almost always get pins and needles in my hands. For this reason and the fatigue caused by concentrating, I do my best to avoid driving long distances.

    Occasionally when eating at the table at home, my hands will get pins and needles. But this happens almost always when eating out - perhaps due to the increased energy demand of getting ready and getting to the venue as well as interacting socially and the longer time sitting with arms raised. I don't eat out often.

    I get pins and needles in my limbs much more quickly than before ME if the blood supply to that part of the body is constrained. Sometimes I'll get pins and needles in limbs even when they are not raised or compressed - for example after doing the supermarket shopping and carrying the bags in. Or even just lying on my back in bed.

    (Since getting ME I have noticed that my feet will often be flexing sideways at the ankle or the sole will rub against the floor or sheets. A constant movement. This is something that happens without me thinking about it but that I can stop when I become aware of it. I think it is a sub-conscious reaction to improve circulation. It happens every morning when I wake up and often when I am sitting.

    Sometimes I get pin prick pains on my face. Often, and especially upon waking, my feet will have a dull burning swollen feeling.​

    I don't know how to respond to your survey. Odd skin sensations have become much more frequent since the onset of ME. And these symptoms have an impact on how I live. But they don't happen all day.

    I think many people with ME will respond to your survey with 'occasionally' or 'quite often' or 'frequently'. And I think people without ME could look at those descriptors and say 'oh well, everyone gets pins and needles sometimes and it's not surprising people ME get this often given how much sitting around they do.

    Perhaps it would be more illuminating to ask if people experience skin sensations more or less frequently than they did before the onset of ME? I think it's a subject that is worthy of more detailed study.

    I've been hesitant to mention the pins and needles to my doctor because everyone experiences that feeling and I fear she will think that I'm just hyper-vigilant and making a big deal about nothing. But, setting all this out makes me realise that my skin sensations are abnormal so maybe it is worth trying to get them checked out.
     
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  5. charles shepherd

    charles shepherd Senior Member

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    Thanks for this feedback

    I fully appreciate the very constructive points you are making

    Unfortunately, because of the tool that we use to create this monthly MEA website survey, the Question has to be very short and there are a limited number of equally (even shorter) shorter answers that we can insert

    And the Question can only have one Answer

    So we have to work within these limitations and hopefully design questions that the majority of people can answer without too much difficulty

    But I do appreciate that there are occasions when the answers don't fit individual circumstances, especially when the clinical situation is more complicated

    CS
     
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  6. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I don't get these symptoms very often now that I make sure to keep my sodium levels up. I have been admitted to hospital a few times with low blood sodium - sometimes serious. This seems to be relatively common in M.E.
     
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  7. charles shepherd

    charles shepherd Senior Member

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    I assume that you (and your doctor) are aware the hyponatraemia (= low sodium) can be caused by a number of medical conditions, some of which are important in relation to ME/CFS (e.g. Addison's disease and hypothyroidism), and that these have been excluded

    Reference:

    https://www.ncbi.nlm.nih.gov/pubmed/20964584

    Abstract
    Hyponatremia is a common electrolyte abnormality with the potential for significant morbidity and mortality. Endocrine disorders, including adrenal deficiency and hypothyroidism, are uncommon causes of hyponatremia. Primary adrenal insufficiency (i.e. Addison's disease) may well be recognized by clear hall-marks of the disease, such as pigmentation, salt craving, hypotension, and concomitant hyperkalemia. Addison's disease is an important diagnosis not to be missed since the consequences can be grave. On the other hand, hypothyroidism and secondary adrenocortical insufficiency originating from diseases of the hypothalamus and/or pituitary (hypopituitarism) require a high index of suspicion, because the clinical signs can be quite subtle. This review focuses on clinical and pathophysiological aspects of hyponatremia due to endocrine disorders.
     
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  8. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Thanks - I can't get my head round this at the moment, but I think it has been looked into as much as I can hope in this (part of the) country. I covered it in several threads, such as this one:

    http://forums.phoenixrising.me/index.php?threads/warnings-about-taking-some-meds-when-ill.33367/
     
  9. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    Does the numbness and tingling that I get in my fingers as part of the general ME/CFS "clumsiness" count?
     
  10. charles shepherd

    charles shepherd Senior Member

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    Little Bluestem and Mel9 like this.

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