Wellness

[Flatbush]

Is there anyone here who suffers from this?

I am having a hard time putting up with it and it occurs all year long, not only in the Winter.

I use Hot Hands, gloves. electric blanket, room heater etc. etc. I carry a Winter coat in the car at all times.

It doesn't take long to show up and this entire year has been a bear to deal with it. It has spread down to the second knuckle, nose (altho not as bad as my fingers) and somewhat the toes. The color has evolved now to  dark charcoal grey.

Yes, I am under  specialist's Dr's care and will take another extensive blood test soon.

Anything I have missed to help myself?

Thanks for any info you may have.

[QBargo]

So Sorry, Flatbush, I'm not familiar with your condition.  But I've used capsaicin cream on my knees, which get painfully cold in the winter.  I get the lowest dose of capsaicin cream on Amazon.  I wouldn't put it on your face,  but it would work on your hands and toes.  Check it out and read the reviews before purchasing.  Good luck!

[Flatbush]

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@QBargo wrote:

So Sorry, Flatbush, I'm not familiar with your condition.  But I've used capsaicin cream on my knees, which get painfully cold in the winter.  I get the lowest dose of capsaicin cream on Amazon.  I wouldn't put it on your face,  but it would work on your hands and toes.  Check it out and read the reviews before purchasing.  Good luck!

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I will try it. Who knows, it might lighten the problem.

I have nothing to lose.

Thanks for the suggestion and I am glad it helps you.

I also have a friend who also has  pain in one knee and I will be sure to mention this.

So double THANKS.

[Ainhisg]

@Flatbush I had not heard of your condition so googled it.  My word!  What an awful thing to have!  I am so very sorry and hope you can find some relief and answers.  

[Still Raining]

So sorry you are having to deal this.  Wishing you a comfortable solution.

[juanitalinda]

@Flatbush 

Oh my .. I am so sorry you are one of the very people in the world to suffer from this disease.   

My mother also had cold agglutinin.  In addition to what you do, she always had toe warmers in her shoes to keep her toes warm ... even in the summer.   

She also  wore thermal underwear much of the time.  

And, of course, the big concern is anemia.  So ... lots of iron.  

I used to belong to a couple of Cold Agglutinin facebook groups.  They provided lots of insight on coping with the disease, finding knowledgeable doctors and treatments, and lots of support.  

It sounds like maybe you found a doctor who is familiar with the disease.  If so, you are very fortunate.  

Good luck ....  I know it feels like you are alone ... but you aren't.