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Old 07-31-2007, 02:09 AM   #1
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Unhappy I know people have burning in their legs and feet, anybody feel cold instead?

This is my first post, and I am desperate to find out if someone else has the same symptoms as me. I have been diagnosed with Fibro, Chronic Myofascial Pain Disease, arthritis in my back, have 2 herniated dics in my neck and have diabetes. One symptom I have NOBODY has ever heard of. My legs, mostly late in the day or in the PM I get what I call "Frozen Bone". The bones in my legs all the way to my feet feel frozen. Frozen like if you were to put your hand on a block of ice frozen. It is summer now, and when I get this type of flare I wrap my legs up really tight in a warm blanket, turn the air conditioner toward me because I am hot everywhere else because it is 90 degrees outside. I saw where some of you have had burning in your legs but mine is the oposite. Has ANYONE out there had this happen to them? My doc thinks I am crazy with this symptom. I have already had my legs tested for that PID thing on TV and all is okay. I feel so alone with this, I hope and pray that someone out there can relate to this!
Kari

Last edited by SOPHIABELLA; 08-02-2007 at 08:11 AM. Reason: desperate for response looking to edit my original question

 
Old 08-04-2007, 09:09 PM   #2
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Smile Re: Does anyone have frozen bone symptoms??

I have fibro but cannot relate to this frozen bone symptoms. i also have a cousin with fibro who says exactly what you have said with the same symptoms. Bumping your post for replys to frozen bone symptoms in the summertime.

BeHappy2

 
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Old 08-05-2007, 03:43 PM   #3
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Re: Does anyone have frozen bone symptoms??

Dear BeHappy2!! I am sooooo excited that you know someone else with this symptom. Did they get help for it? What did thier doc say? I have severe Fibro, and all the other symptoms everywhere else, but the frozen bone thing drives me crazy!! You cant know how happy you have made me just to know that I am not alone out there with this wierd symptom. THANK YOU SOOO MUCH Could you please talk to your cousin for me? I am sure they feel the same emotion that I do. PLEASE PLEASE WRITE BACK!!....Kari

 
Old 08-05-2007, 07:03 PM   #4
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Smile Re: Does anyone have frozen bone symptoms??

Hi Kari, I'm glad i come across your post. Yes my cousin and i both have severe Fibro. We live 5 hours apart but we phone talk often. She has been explaining this frozen bone symptoms to me for quite sometime. I thought maybe it was poor circulation in her legs & feet. She just bought Andrew Lessmans circulation vitamins. I'll definately give her a call this week, she will be interested that it's also not only her with this. Keep your chin up, you're not alone afterall.


BeHappy2

 
Old 08-05-2007, 10:19 PM   #5
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Re: Does anyone have frozen bone symptoms??

Dear Happy2, God I cannot believe that someone out there somewhere knows what the heck I am talking about. I wish your cousin could join the healthboards too. I also thought it was a circulation thing and then I had that test for PAD (I think that is what it was called, its the one on tv they talk about circulation in the legs, and my legs have good circulation.) How is your Fibro effecting your life? I love that new commercial on TV, I looked it up on FibroHope.org and it made me cry. Finally! And reading all of their symptoms made me feel not so alone too. What are you doing for pain management? I am glad to have met you!....Hugs Kari

 
Old 08-07-2007, 08:33 PM   #6
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Smile Re: Does anyone have frozen bone symptoms??

Hi Kari, Fibro affects my life daily, continous pain. At this time for Fibro pain management i do water therapy and pain meds, muscle relaxer. I am so glad to have found this board, i had attended a fibro pain management group but found i can't get to them due to never know how bad each day will be with Fibro Flares. Group meetings were once a month and this board i believe will be much more helpful for me. I hope you can learn more of your frozen bone symptoms, i will get back with you more on that with my cousins symptoms.
There has to be more than just you 2 with this. Hopefully someone will respond to your post here. Good Luck


BeHappy2

 
Old 08-07-2007, 08:51 PM   #7
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Re: Does anyone have frozen bone symptoms??

Hey Behappy how are ya doing! How are you doing with your fibro problems? Have you had it long? We have the once a month meeting around here too, but like you, every time it seems to come up, I am in the middle of a flare. It seems I am having more flares than not these days, although I had a really really good June. Let me know how you are doing too, and I hope someone else knows about the frozen bone thing too......Kari

 
Old 08-09-2007, 08:03 PM   #8
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Smile Re: Does anyone have frozen bone symptoms??

Hi Kari, My cousin with the frozen bone symptoms with legs and feet says she also feels knots in side of legs. Very painful with this frozen feeling. Today temp in the 90's and she has legs and feet wrapped in blankets.
I sure hope you 2 can get more answers on this. Hopefully someone else here can relate to this or knows someone who also is having the same frozen symptoms .

BeHappy2

 
Old 08-09-2007, 09:21 PM   #9
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Re: Does anyone have frozen bone symptoms??

Dear Behappy,
Wow, does your cousin have anything else wrong with her? Has she seen a doc? Has she had any falls etc???? We are almost exactly the same with that symptom. Does she have fibro too? Can she get on the boards? I would love to talk to her! No luck yet in getting a new doc, but maybe he/she can find an answer for this terrible symptom!!!! Please keep me posted sweets!! ....Kari

 
Old 08-09-2007, 09:44 PM   #10
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Smile Re: Does anyone have frozen bone symptoms??

Kari, She was surprised to hear that someone else has the same symptoms as her. We talked today, she was wrapped in blankets from waist down. She has severe fibro, back problems, macular degeneration as i also do. She does not do the computer. Just had recent eye surgery. She has not talked to a doctor about the frozen symptoms, but will. There has got to be a reason for this. I have the opposite, burn sensations in feet and hands. Fibro can do weird things so maybe fibro is a part of frozen bone symptoms to some.
Keep your chin up, maybe someone will respond here on board.

BeHappy2

 
Old 08-09-2007, 11:17 PM   #11
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Re: Does anyone have frozen bone symptoms??

Oh my gosh,
I have never been diagnosed with Fibromyalgia, but I do have a lot of the symptoms. Anyhow about 2 to 3 nights a week I will wake up (if I do even make it to sleep) chilled to the bones. The only thing that helps is to get up and take a hot bath. I might do this 2 times a night. It is in the 90's here this week and I have done this 3 nights this week so far. I don't have a clue what it is all about. My hubby thinks I'm nuts. I just say in the middle of the night "Im chilled to the bones I might as well get up and take a hot bath." After that I am usually okay and fall to sleep.
Deb

 
Old 08-09-2007, 11:51 PM   #12
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Re: Does anyone have frozen bone symptoms??

Hi Deb416,
Is this frozen to the bone feeling you have, all over? Like you are just freezing cold all over, with goosebumps or something? If you suspect you may have Fibro, and I hope you dont, you should see a doc right away. Your life is about to change and the sooner you know about it and can get a handle on it, the better! I had several falls that resulted in breaking my tailbone, so even today, 10 years later even with the bone completely healed I have this incredible pain around my tailbone, You cannot even touch it, it hurts too much. If I stand more than 4 minutes that area begins to actually smasm and cramp up so I have to immediatly lay down. Before the "frozen bone" thing hits me. The funny thing is, that when I cramp up like that I have to lay down with my legs up and an ice pack on my tailbone. If the frozen bone thing comes then I have to take away the ice pack and wrap my legs etc, like I said. This pain seems to radiate sometimes down around my butt to the front of my legs then wrap around to my calves and then to my feet. The pain from my legs down is just my bones that feel like they have are surrounded by blocks of ice. You know like if you put your hand on a block of ice, top and bottom of your hand, how it would start to hurt because of the cold, well that is how my bones actually feel. The skin is warm to the touch. I usually get this late in the day or at night, mostly without warning. Lately I have been wrapping them tight in a thick wool blanket, including my feet and then have the airconditioning on because it is bloody hot in my home! I have tried Capzasin, but that is pricy when you are covering your legs and only seems to effect the skin, IcyHot helps if I have it around the house. It is just a miserable feeling! I have had trigger point injections around my tailbone/sciata area but it didnt work. The doc says that that part of my body has "Chronic Myofascial Pain Disease" which is close to fibro but not quite. In addition to that I suffer from the typical pains of fibro all over that feel like a bunch of bruses that are being pushed on every where of the rest of my body. NOT FUN!! What are your other symptoms? Perhaps I can give you more advice.......Hugs, Kari

 
Old 08-10-2007, 09:12 PM   #13
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Re: Does anyone have frozen bone symptoms??

I was shocked to see this post, cause I thought I was alone with my freezing legs!!
Your right on with the description...It can be extremely hot temperatures outside and my Legs and feet are ice cold..I have even noticed that if there is a fan on and the air from it hits my legs, they get so very cold that its even painful..and no matter what I do I cant get them warmed up!! I have posted once before about that, and said that I have even gotten up in the middle of the night and used the blow dryer to warm the legs and feet up..I take elavil...lately it seems that is not doing anything for the pain..after summer is over, Ill be back to my rheumie asking about switching to something else...
My family thinks I am strange!! Freezing cold in the heat of summer!! and no way to warm up the bones...
Sorry your dealing with this too...but its nice to know that Im not alone anyway!!

gentle hugs to you,
cj.

 
Old 08-10-2007, 09:40 PM   #14
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Re: Does anyone have frozen bone symptoms??

I have read this thread several times and never put 2 and 2 together... you know how that fog takes over. My problem on the frozen issue is with my shoulders. It can be 100 degrees outside but is a fan or air conditioner hits my shoulders the jacket comes on. My pain doc started me on the trigger point injections in these areas including the neck, shoulder and top of back. I am not giving up but haven't had much success either. Right now my hands and feet are frozen, pair of socks on, sweat pants, shorts, shirt and thermal jacket. Some folks do well with ice, not me though and some do better with heating pads under the blankets, that would be me.

Hang in there and keep those bones and muscles warm

 
Old 08-11-2007, 01:27 AM   #15
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Re: Does anyone have frozen bone symptoms??

Hi CJAmMOM and Jenn!
You know, for years that particular symptom was the only reason my daughter really believed me with all this pain, because she said NOBODY would make up such a crazy symptom!! I HATE IT! I too, have tried trigger point injections for my frozen bone area and it didnt work, neither did massage therapy or needle therapy, and even all those doc, (and since all this began a long long time ago, there have been 17 of them) have never heard of such a thing either! You guys are the first ones who can relate and I just cannot tell you how happy I am to find out that I am not the only one in the universe who has this symptom! Jenn*** I now have this terrible shoulder pain too. But I think, (but not 100% sure) that it started because I am on the couch about 70% of the day and I lay on my right side. I went to the doc about this and they gave me this exercize to do but it is just getting worse! I now try and lay on my back during the day, but that doesnt help, and when I sleep in bed, if I lay on my back I am so very very sore in the am that I can hardly get out of bed. It is hard for me to lay on my left side for some reason. Habit? But I tell ya, I cant lift above my head anymore, forget trying to get the bra off and bending my arm back to unclip it, Lord that hurts, and if I just move it in the wrong way it stops me in my tracks because the pain is so sharp and intense. Not cold though. I dont know if that is fibro or not. ***CJ my family just looks at me like HUH? Hopefully between all of us here, and behappy2's cousin we can find out what the heck this is and get a cure for it? The rest of my body has the regular aches and pains like bruises all over that people are pushing on, but the "Frozen Bone" (thats what I named it) I think (maybe?) it started from the repeated falls and breaking my tailbone, and the problem with my bladder and constipation I get from all the meds agrivates that area. The tailbone is healed, but maybe it just damaged the muscles and nerves that go down my legs? I did have an EMG done and they didnt find anything wrong in that area. Isnt it wierd that when we go to the doc's we WANT a diagnosis with a name attached to it? Most people I suppose want to just think that it is nothing serious, but not us! I would take serious for a straight answer, wouldnt you? Well, lets keep hoping someone sees this post and has a cure! Might as well shoot for the moon right! Hang in there my buddies!...Kari

 
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