Hello all !! new to the foundation but no stranger to aps, Any one suffer with pins n needles???

HI every one ,as i have never spoke or met anyone else with aps ,does any one else suffer with pins n needles numbness to hands lower wrists and toes, bad stress, bad headaches,cold to the bone in minitues, but sweat like a shower at the same time, eye snot, aching snap clicking joints,bad concentration, ???

10 Replies

  • hi yes i get pins n needles in my arms hands.legs also can be very cold that im shivering even with a blanket and heating on or can go very hot n sweaty n get lots of headaches and i can go just blank n forget what im doing .but im not sure its all part of hughes ?? like you im new to the site but the people on here are lovely and will help n support you xxx

  • Thank you for your reply thought i was out there by my self !!! , b ok if lived in spain but r weather not so good ,

  • One of the lesser known sides of Hughes is the dis-regulated autonomic system. Putting it simply this is the system in your body that does everything for you without you consciously having to think about it - so for instance it regulates your temperature, controls the amount of correct hormones being released into your system, your digestion, your heart rate, when you need to go to the loo etc. So many of the problems you are experiencing will be because this is out of whack and aroused. This will also affect your sleep.

    There are medications that can help with this so you need to talk with your Doctor about it.

    Above all try not to get into stressful situations as you body will be less able to cope with it. Adopt good sleep hygiene and try and pace yourself where you can. This will help in the "wind up" which needs to be calmed down so that your symptoms will feel and be easier to deal with. x

  • Very good advice. I speak from personal experience. My Neuro tells me that some of these symptoms, such as pins and needles, can be caused by the aura that comes before migraines too.

  • Hi there and welcome. I get pins and needles sometimes, and also I am aware of the overlap of diseases, untreated thyroid problems which often go undetected and are quite common with APS can cause terrible internal shivering and also sweats, and of course the brain fog, which we all have with APS anyway. I suggest you ask about this if you can. Mary F x

  • Yep I get all the above including what I can only descibe what feels like ice cubes being dropped into the scull?!!!

    We all feel alone with our symptoms but believe me...were not!

    When inr goes low like at moment it all gets worse with me....like now!!

    Hope we can help you any way we can with your worries & questions x

  • Hi daftdog! I have all that you're describing above plus a host of other symptoms too. Sorry to disappoint you but being in Spain doesn't make any difference at all!!!!! :) When the weather outside is 45 degrees I can still feel freezing cold and experience pain. Or I can have hot sweats for hours even in the winter when we go down to minus figures at night time.

    I hope you are getting some good advice and help from your medical team? Good luck from here InSpain. xxx

  • cant thank you all enough for reply,s and support , big sigh of relife, doctors ey some r brill some r just rude and igroant, i to was kikced out of my life long sugurey for losing my temper with one of my docs, was his fault he was in the wrong , but still did not get an appology,doc,s ey, good ones n bad ones, had to go a year with out a doc n scrounge my warfarin off other people or walk into casualty were they eventualy refused me , crazy world finaly i was alicated a doc he not the best as even he is sceptical of all my symptoms as some days im fine other days im a mess but im to scared to question him ask for help until now thanksto all of you, !!!

  • Is possible for you to see Dr. Hughes in London? You might need that diagnostic lick start

    And I can totally sympathize with the challenge of holding one's tongue when one's very real and serious symptoms are back handed away by judgemental, clueless doctors.


  • yes i have pins and needles numbness etc , feels like my hands have been in stinging nettles 24/7

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