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Hughes Syndrome APS Forum

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Does anyone have tingling and numbness in hands and feet?

Mike88 profile image
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I was diagnosed with Hughes last spring. During that time I constantly felt fatigued and sick. I lost a lot of weight and was constantly having joint pain and muscle pain to the point where I was having difficulty walking. I began taking lovenox injections daily and over the next few months my symptoms seemed to improve.

Over the past several months however I began experiencing numbness and tingling in my feet and hands. Sometimes the tingling will stay for days to weeks, and sometimes it will only stay for a few hours. I play hockey and have noticed that a lot of times as soon as i get on the ice and start skating hard, it will instantly trigger the numbness in my feet and hands. Other times it will just occur randomly. Does anyone else experience this?

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Mike88 profile image
Mike88
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jetjetjet profile image
jetjetjet

hi mike - yes i have problems with just that ,along with muscle spasams, doc just did estensive spinal x-rays ,still waiting on results- these tinglings that lead doc s to all my clots to begin with. in 2009 . ------jet

tassie profile image
tassie

If the cold is triggering it then it might be Raynauds Syndrome. Try and wear warmer clothes on the feet and hands and avoid sudden changes in temperature and see if that helps.

Things like getting out of a warm bed into the cold air on a very cold day, stepping in or out of the warm shower on a cold day, even getting changed on a cold day can trigger it so I would think that going out onto the ice where it would be several degrees colder might trigger it as well.

Might not be your issue but worth investigating perhaps?

nyctapdancer profile image
nyctapdancer

I had tingling and numbness in my feet soon after my diagnosis 15 years ago. Turned out to by caused by hypothryoid. My TSH was 9. Normal is between 1 and 2. I take two drugs - synthroid and cytomel. I learned about cytomel here in the forum and i am so thankful because it stopped the pain and numbness in my feet and many other aches and pains too.

you have to find an endocrinologist who is up to date enough to know that the AMA changed the protocol for hypothyroid 10 years ago, recommending keeping the TSH between 1 and 2 instead of 4 and 5 (at which I am SO SICK) and also using both cytomel and synthroid.

If you do to one who doesn't use the new ptorocol, thank him or her, and move on to one who actually reads his or her journals. How I wish there were more of those!

Barbie profile image
Barbie

Yes, this happens when I am on the treadmill. Only my right side though. Would like to know what others have.

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