Skip to content


    Exciting News for WebMD Members!

    We've been busy behind the scenes building new message boards for you. You'll have new and easier ways to find messages, connect with others, and share your stories.

    And, this will all be available on your smartphone or other mobile device!

    What Do You Need to Do?

    The message board you're used to will be closing in the coming weeks. While many of your boards will be making the move to our new home, your posts will not. Want to keep a discussion going? Save posts you want to continue (this includes your member profile story), so that you can re-post them in the new message boards.

    Keep an eye here and on your email inbox, we'll be back in touch soon to give you all the information you need!

    Yours in health,
    WebMD Message Boards Management

    Icy Sensation?
    kmc1218 posted:
    I am not sure how many people this affects, but I have developed a new symptom recently that is quite unsettling. Along with the severe, constant pain that my doctor and I are still trying to manage, I have developed cold spots. I am not talking cool to the touch. I am talking "ice cold frost bite" sensations in different parts of my body. The sensation is transient, so a pinched nerve has been ruled out. The cold spots do not feel cold to the touch and does not hurt (thankfully) but the iciness seems to go deep into the muscle and can only be relieved from constant movement. Does any one else have this symptom, or am I just "defective" Any comments would be appreciated. Thanks.
    Was this Helpful?
    8 of 14 found this helpful
    angelldakota responded:
    Hi KMC... I wish I could say I was defected but I am sure neither of us are... I too have these ice spots... I have to be bundled up before I can do excersises tho,... and they have to be light ones from my crutches or in bed... But moving sometimes dos make it better for me... Or I curl up in about 3 blankets... if I can handle the touch of them on me... I have multiple problems and can't always have anything on my legs...

    There you aren't defective unless we both are... but I will bet we aren't the only ones in our corner... Anyway... Trust me... You aren't alone... and FM nor illnesses... Even my other 17... doesn't make us defective lol

    take care... bless you.. Jan/angelldakota
    cndlu70 responded:
    YES!!!! I have experienced it, along with severe pain. Normally, it is in my toes, but I have had it in different places, too. (also very itchy)

    My dr. hasn't really given a diag. on this particular 'happening', but seems to always say it goes along with FM. I'm wondering though if there is more going on with me other than FM. I have done some research on my own and have many symptoms of neuropathy.

    I'm sorry to hear that you're having these problems, but am glad to know that it's not all in MY head.......
    nene_11 responded:
    I get that all of the time in my fingers & toes & often down the fronts of my thighs.
    I dont know what it is & Im not sure anymore that I care!
    You are not alone
    shannlee0379 responded:
    I haven't yet been diagnosed, but along with the painful tingling and the hot spots I get on my lower back with pain, I do get icy spots on my cheeks with the tingles. I thought I was going crazy as it only happens on my left side. But most of my symptoms are on my left side.

    Mckm2 responded:
    I've had FMS for 27 years and it does pass through many different forms and phases. Try to relax and not worry about it too much. Just try and work through it physically. Tai Chi has always been my good friend although I have been lazy lately. When I went through a period of needing to constantly move to deal with pain I tried many kinds of relaxing movements like gardening, Tai chi, swimming, stretching. Focus away from you cold and think warm thoughts. Your nerves are working on healing themselves. The body is always at work healing even though we are managing a chronic illness. We must support our inner core with patience and understanding. Good Luck Mckm2
    OneWriter responded:
    Oh wow! I thought I was the only one. It wasn't until today, actually, that I started to think that this sensation could be related to the FMS.

    Mine is in only one place, the middle of my back, and the best and only way I can describe it is the sensation of a block of ice that has been placed directly on my back. It is icy cold but it does not feel cold to the touch. In my case, movement helps but does not shifts it and only, the covering of the area with (usually) three of more layers of clothing, does the job.
    An_198657 responded:
    I have cold spots too.
    Sometimes it is just a ice cold thumbnail, or 3 cold toes.
    Then it switches and one side of my face will feel hot.
    It is very weird stuff !
    Know that you not defective in any way.
    Chip13 responded:
    You may want to have a Dr. look at your thyroid function. And don't just rely on blood tests. Make sure they check you THS, T3 and T4 (to start with)
    khouli replied to Mckm2's response:
    Hi, I know this is very old post, but I saw that you have had FMS for 27 years, and was wondering how your fibromyalgia started. I have been having some ongoing symptoms for a couple of years now and it all started with terrible brain fog & that's when my doctor told me it was just anxiety. As far as the pain goes, mine seems to come and go and change throughout time. It wasn't pain that was unbearable until lower back hurts very badly when I lean back. I've been to the chiropractor 3 times and he says its because I'm out of alignment but nothing he has done has fixed it. Every time I go to the gym I regret it because I wake up so sore the next day. Another kind of pain I get off and on is tender to the touch on my arms, legs, neck, and face (jaw mostly). I have odd sensations that come and go quickly. Most recently, I have to urinate very frequently and have even had incontinence a few times. I have terrible stabbing chest pains sometimes and terrible abdominal pains that make it hard to stand up. All these symptoms are so sparatic and come and go which I was wondering if that was normal for FMS. I have a rheumatologist apt at the end of Feb. but I can't help worrying that it could be MS. Obviously if I had to pick one of the two, I'd hope for Fibro. Sorry for talking your ear off! Just curious, if these things sound familiar to you.
    nhojo replied to OneWriter's response:
    Curious if you still have this symptom 5 years later?

    Helpful Tips

    Vitamin D level checked ***
    I encourage everyone who is having pain problems to ask your doctor to check your Vitamin D level......a simple blood test...and so very ... More
    Was this Helpful?
    233 of 263 found this helpful

    Related Drug Reviews

    • Drug Name User Reviews

    Report Problems With Your Medications to the FDA

    FDAYou are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.