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Adrienne Dellwo

Cold Hands & Feet: Fibromyalgia, Chronic Fatigue Syndrome or Raynaud's?

By December 15, 2011

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Since I've had fibromyalgia, my hands and feet have been prone to getting cold. I'm not just talking a little bit chilly - I mean intensely cold to the point of being painful, and really difficult to warm up. That's part of temperature sensitivity, which is a pretty common symptom of fibromyalgia and also of chronic fatigue syndrome.

However, in many of us, it goes beyond a symptom and is actually a separate condition. When cold extremities meet certain criteria and are paired with particular symptoms, it could mean that you have Raynaud's syndrome (also called Raynaud's phenomenon.)

Does your skin turn blue when you're really chilled? Does a bout of stress seem to bring on the cold? Learn the symptoms of Raynaud's, how it's diagnosed and treated, and why it's important that you treat it separately from your other illness(es):

Do you have or suspect you have Raynaud's? Did you mistake it for just another symptom? Has treatment helped? Leave your comments below!

Learn more or join the conversation!

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Comments
December 15, 2011 at 11:46 pm
(1) Shawna says:

I was diagnosed with this by a podiatrist 6 months before my fibromyalgia diagnosis. It was August and 90 degrees outside but my feet felt like ice. He had me close my eyes and we chatted about the weather and other inane things while he examined my feet. Then he said, okay, open your eyes and I was shocked to find that there were slightly bloody towels at my feet… He told me he pricked my toes with a needle and I did not react to any of the stabs. He told me I had Raynauds and if I wanted to keep my toes, I would have to quit smoking immediately. After years of trying to quit, it was the thought of gangrened toes that finally made me succeed. I take Norvasc, a calcium channel blocker, to control the symptoms but I still have to take care and not aggravate my fingers and toes. That includes wearing gloves or oven mitts to get stuff out of the freezer! It’s weird at first but you get used to it. I have found CeraVe cream (available at major drug stores) keeps my skin healthy and only rarely do I get cracks or breaks in my skin. Oh, and wear dishwashing gloves! No one told me this!! I suffered a lot of skin problems on my hands until I figured this out!

December 16, 2011 at 3:33 am
(2) typingterror says:

I also have Raynauds. My hands and feet froze while I was in high school when I stupidly walked to mall in snowstorm because I had promised girlfriend I would meet her there. It was quite awhile before I knew my fingers were safe and not going to rot off and my girlfriend did all writing required for my classes. It took me quite awhile learning how to get jump on problem. I always keep my hands and feet protected beforehand. When I had surgery I warned doctors about this so they would not think I was a corpse and they then put heating blanket on me. To this day I will not buy any frozen meat to cut up as this will instantly trigger problems.

December 16, 2011 at 1:21 pm
(3) Nancy A. says:

I have both CFS and fibromyalgia. I also have Raynaud’s syndrome. I need to wear gloves as soon as the temperature is in the 50′s. I wear socks to bed even in the summertime. Sometimes in the supermarket, I put my gloves on when I get to the frozen foods section.

I also have an underactive thyroid, and I’ve been on Synthroid for years. That’s two autoimmune disorders (hypothyroidism and Raynaud’s), and other autoimmune disorders run in my family. That’s why I’ve always wondered if there is an autoimmune component to CFS and fibromyalgia — I think future research may bear this out.

December 16, 2011 at 3:55 pm
(4) Laura says:

I’ve had cold hands and feet as well as a cold nose since I suffered frostbite in my early teens. I was able to tolerate it until my mid 40′s when it seemed to become worse and I got a diagnosis of Hashimoto’s Thyoriditis…an autoimmune condition. My PCP seems to think I have Reynaud’s. All this on top of fibromyalgia, which I was diagnosed with at 42 after a major spinal surgery.
Autoimmune conditions seem to run in my mother’s side of the family, and like Nancy said- I wonder if someday they will find that FMS/CFS is indeed an autoimmune condition.
I too wear bedsocks to bed even in the summer when my feet are cold and clammy- and lots of jokes are made about my “dog’s nose” which is always cold! I can wear gloves and socks, but keeping my nose warm in a bit harder to do! :)

December 16, 2011 at 7:09 pm
(5) Mog says:

I developed Raynauds after my thyroid went under-active (Hashimotos). Didn’t have it before when I “just” had CFS. And yes, I get the cold nose too!

December 16, 2011 at 7:12 pm
(6) Mog says:

Has anyone tried any of the herbal remedies, like ginkgo or hawthorn, taken internally, for it? I have a herbal “hot” cream with pepper and other stuff in it, horse chestnut I think, that I sometimes put on my hands before I go out (obviously with gloves on top aswell – it’s not that good!)

December 16, 2011 at 8:20 pm
(7) LymphMan says:

Whether you are living with fibromyalgia, chronic fatigue syndrome or Raynaud’s you are suffering with an acidic pH that is limiting your blood flow. This imbalance into the acid side of the pH chart is constricting your lymphatic system limiting circulation in your specific area. Three steps to improve most health conditions. 1- Test your saliva and urine pH, 2- balance your pH and 3- manually activate your lymphatic system to improve circulation.

December 16, 2011 at 9:19 pm
(8) Anna says:

This is so interesting! I have not be definitively diagnosed with Raynaud’s but have suffered for years with icy feet & hands. I, too, wear sox at nite year round. I have so many pairs of gloves everywhere I’m teased I should open a store! And – as I am quite past menopausal symptoms – have been wondering why I vacillate from internal chill to heat, regardless of the season.
I treat myself to an hour massage once a month or so and the masseuse comments on my numb, cold feet b/c they can take quite a punishment! It’s b/c of the numbness symptom that I have been told it might be “idiopathic peripheral neuropathies”. Which translates to: “we have no medical idea why your extremities get numb” ! Whatever this is – it is encouraging to hear how others are doing! Happiest of Holidays to all !

December 16, 2011 at 10:42 pm
(9) Leslie says:

I used to have frequent problems with my fingers turning blue. It kind of made me feel panicky, and it could happen when it was only slightly cool. I started putting 1/2 to 1 tsp. of cinnamon on my cereal every morning in an effort to lower my cholesterol. (It didn’t help, but I’ve enjoyed the taste!) I gradually started having fewer and fewer blue-finger episodes. One day I was reading a pharmacist’s syndicated column which said that cinnamon may help Raynaud’s phenomenon. The possible connection had never occurred to me. I wanted to share it with a grocery store clerk who also had fibromyalgia and suffered a lot with Raynaud’s. She told me that she hadn’t been having Raynaud’s symptoms any more, that she had also been using cinnamon on her cereal, but she didn’t know there could be a connection. So it’s something you might try. Couldn’t hurt, anyway.

December 16, 2011 at 11:50 pm
(10) Deb M says:

I have FMS and almost always have cold hands, feet and nose. My normal body temperature is about 97.7 [I used to think that something was wrong with the thermometers because I could never get them to 98.6] I know that not everyone has 98.6, but just wondering if it had anything to do with FMS

December 17, 2011 at 5:51 pm
(11) lloyd says:

My problem is not so much coldness as it is numbness of my hand extremities, especially during the night. This was one of the first symptoms I experienced at the outset of my fibro experience; at least, it was most conspicuous before later symptoms of extreme fatigue and tender points. My doctor shrugged off the numbness; he said that was common, but I didn’t think so. I still have the numbness symptoms, but there are so many more debilitating symptoms that numbness now pales besides the others.

December 17, 2011 at 10:28 pm
(12) lilly says:

thank you Adrienne for the wonderful support you offer to many of us suffering with fibro or CFS, reading your topics anwser more questions to me than any doctor ever have. I been suffering with cold feet and hands for years. I too wear socks but all day long, I can’t do without them, I also use frannel pj’s and have blankets always avalable to use anywhere around the house, my husband thinks that it’s funny when everybody are in shorts and here Iam cover from head to toe. My feer turns purple but doctors have ruled out RFS. My feets are so sensitive sometimes that the socks friction has made my right foot very rough like callous all over, my docotor is surprised but can’t explain why. I guess it’s another trade mark of my condition!!!!

December 19, 2011 at 3:46 am
(13) Tess says:

Thank you Adrienne, for all the effort and work you put into this forum as we all know that you too suffer as well. Just want to let you know it is much appreciated. I too have had cold hands and feet for many years, even when I was kid(Now 50). My Mom used say I should have been born and raised in a hot country(still live in Canada and it still gets pretty cold). Anyway sometimes, I think it could be your blood pressure as well as cholesterol. A number of times when I have gotten sick with a cold or flu/virus, the doctor would find I was suffering very low blood pressure as well. I was wondering if the cinnamon would work for that as well. Some people have told me eating something like salty chips or something salty will bring it up. Just a few ideas to toss around, no harm in trying. Anyways, Merry Christmas and a Happy New Year and not too much stress either to one and all.

December 22, 2011 at 9:31 pm
(14) Desperado says:

You have Lyme’s disease! I suffered from all these symptoms and it took me 6 years to be diagnosed. These illnesses DO NOT just happen~and lyme’s can be transfered MANY WAYS. I got it from my husband and my kids got it in utero from me. We were never bitten by a tick. I had CFS, Fibro, Raynauld’s, all the sypmptoms of several different auto-immune disorders, including MS and hypo-thyroidism. All those symptoms were caused by my 3rd stage lyme disease. It is totally treatable with long term low dose anti-biotics. Ive been on them a year and am seeing significant improvement with my Chronic Fatigue. But you MUST have a Lyme Literate Doctor and there are only 2 labs in the US to send tests to. Any other lab is worthless. I tested negative while I was in 3rd stage Lyme. Send your tests to StoneyBrook Lab in New York, or Igenex in California and they MUST be read by a MD that knows all about Lyme or they won’t treat you. YOU CAN GET BETTER! I AM LIVING PROOF!

January 1, 2012 at 4:22 am
(15) Mary T. says:

I was just complaining tonight about my feet, hands and nose feeling sooooo cold even though I’d turned the heat up to 71 degrees! Luckily no blueness, etc. But it never occurred to me it might be FM/CFS related. Sheesh, one more thing to add to the list of symptoms!! Does it never end?

April 30, 2013 at 7:52 pm
(16) Farah says:

I’ve been having FMS, CFS and Hypothyroid, etc. and my hands, feet and nose are almost always very cold. I wear socks to bed at nights even during the summer. Very often my hands and feet feel so cold that it feels as though my fingers and toes are being smashed, very painful. What I find strange is that my body temp is always in the 97s but I feel too warm all the time everywhere except hands, feet and nose. I have the A/C going most of the time (with socks on of course) since I cannot tolerate any temperature above 68-70 F.
I also have “too strong” sense of smell, taste and hearing. For the past few years, I’ve kept ear plugs with me to use in public places like malls, grocery stores, etc. Do any of you experience the same? Any suggestions?

May 15, 2013 at 5:05 pm
(17) Michelle says:

I’m the same as Farah. I have FMS, hypothyroid disease and my temp never goes above 97 point whatever unless I have a fever. I must have A/C going all the time and have terrible heat intolerance, but my foot hurts and gets very cold. I also battle cracked calluses. I also have too strong a smell and hearing to the point where I become irritated. I hurt if touched in the wrong place are touched too hard. I’ve not been told I have CFS, but I am tired all the time and never rested. I don’t sleep during the nights; I sleep early morning until I wake up, but I don’t sleep well.

October 10, 2013 at 3:16 pm
(18) Kate Sommers says:

I have raynauld’s. My savior are natural sheep wool socks by Mr Woolly Socks. I tried other socks but only these seem to work. They are made from unprocessed wool, maybe that is the trick. First time I got them as a gift and they literally saved my fee- Now I passionately share my experience to help others, because these socks really really help – get them on http://www.mrwoollysocks.com, on ebay.com or etsy.com.

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