Cold pain

Discussion in 'Fibromyalgia Main Forum' started by Minka, May 10, 2003.

  1. Minka

    Minka New Member

    Dear Group,
    I am a 51 year old female who has had FM for 20 years. I have many illnesses. What I am very upset about latested problem. Nov.I started getting terrible pain.A 10 & a half on a scale of 10. I know pain. I've had many surgreies, kidney stones ,I know pain.
    When this happens & we live in a warn area. My hushand puts be between flannel sheets, I wear my underware, long johns, pj's , gown, house coat, 2 pairs of socks, a pair or booties & soft house shoes. My husband puts a hot pad me, in my hip area were it hurts, not the joint. then a flannel sheet on top, electric blanket, quilts , gloves, hate & cotten put in my ears & nose holes because they are cold. I take my temp, no temp. I may be that way in terrible pain 20 mins to 14 hours. when I get hot, the pain stops , my head is wet, soaked. I have no pain & then can be with out pain for 20 mins to two days.
    NO ONE KNOWS WHAT CAUSES this. Please help me someone has to had it, some DR. has to have seen it, or hesrd about it. Vicki
  2. kgg

    kgg New Member

    was worse because my muscles were tight from the cold. But nothing like what you experience. I'm sorry that you have to go through that.

    Welcome to the board. I hope you get some answers. -Karen
  3. Meerkat60

    Meerkat60 New Member

    I have had something similar to what you describe but not nearly to that extreme. I asked my son to give me flannel sheets this Christmas because I was having a really bad time with the cold. It made me ache so bad and I just couldn't seem to get warm. My mother gave me an oil radiator space heater and I stayed shut up in my room with it on high for much of the winter. I also used a heating pad and lots of blankets but sometimes I still could not get warm. I didn't have the sweating afterwards and it sounds like your pain is more extreme. I haven't had much trouble with this since spring arrived. You said you live in a warm area but maybe you could try shutting yourself off in a room with a space heater and all the other stuff you use and see if that helped at all. Hope you find relief soon.

  4. Minka

    Minka New Member

    Sorry you have something like it too.I'm havin a needle biopsy in my left hip Wed.
    In less there is cancer in there, I don't know what it is. I've been fighting the new round off illnesses for 17 months.
    I feel like I've lost most of my friends & family. I hope you have people around you who care.
    How I wish I could goto Sranford, or Mayo, but no money. HUgs Vicki
  5. Shirl

    Shirl New Member

    Hi Vicki, wow, you really are having a bad time.

    I noticed you said you are 51, could it be that you are also going through menopause? I would get that horrifc cold feeling (which made the FM pain worst)when I had night sweats. First I was smothering, then I was freezing.

    I do have one suggestion for keeping warm, get a 'mattress heating pad', it is just wonderful for keeping your body warm and does help with the pain and the stiffness.

    I also use a Down Conforter. Its light and keeps you warm without all the weight of the blankets. Also, a pillow between your knees with help keep your back aligned and help relieve that hip pain.

    I sleep on a featherbed, on top of that I have a mattress heating pad, winter and summer. I live in Louisiana, so its more warm than cold. I put the a/c on cold in the summer, but I am warm in the bed. The only way I can sleep.

    Sure hope you get some answers soon.

    Again, welcome to the board.

    Shalom, Shirl
  6. Minka

    Minka New Member

    No its not hot flashes , with it was. I will have bone biospy in the hip Wed.I'm so alone.
  7. danisue22

    danisue22 New Member

    Hi ,I'm so sorry to hear you are having such a bad time of things. I don't have this problem but I have a friend that does and she sleeps inside a sub zero seeping bag.then with the covers over her.She said the uniformed heat that the sleeping bag gave her helped greatly. The matress heating pad sounds like a wonderful idea also. I hope they can get to the bottom of it all and you'll be feeling better soon. God Bless Danisue
  8. Notonline

    Notonline New Member

    Vicki...this sounds horrible. I get pain in my legs that is a little similar...I'm the one when it's in the 90's outside I'm wearing leg warmers (yes, they still can be found) because my legs are hurting so bad. I'm 36, so it's definately not the fashion statement of the year, but it really seems to help the pain alot. I'm always cold.
    My blood is a little high on the clotting risk side (thicker), so I've been told that can contribute to the "I can't get warm feeling". The only things I can think of off the top of my head are low thyroid, and Hypercoagulation, testing maybe, not sure?

    Take care
  9. Minka

    Minka New Member

    I am in terrible pain at times , since last Oct.
    I can put my finger right on the pain.
    I've been sick with many illness for 17 months.
    Before that I had two pieces of bone taken from my hip to put in my
    neck. I also got massive staph there in the hip in 1996.
    I just want to ask you one question.
    When this pain in my hip, [not hip joint,] starts I put on long john's ,
    pj's, long pajamas, house coat, flannel sheets, hot pad on left hip,
    electric blanket, two blankets , quilt, cotton in my nose & ears,
    because I'm so cold & a hat. My husband tucks me in. I'm in terrible
    pain, cold pain in the hip.
    I have NEVER been a cold person before. This may last 20 mins or 14
    hours. I have no temp. This has happened 40 -50 time. All a sudden I get
    hot , the pain is gone, my head is soak & wet. It could come back in 20
    mins or two day.I live in Calif, it doesn't get very cold here.
    In the last week I've lost 81 eyelashes & eyebrows.Lat year they said I
    have Interstitial Cystitis , and the found a simple cyst on my ovary.
    I have a bad spine. They say I have Actinic keratinous in my mouth. I
    don't believe that. They did a hole biopsy 2 times.

    No one has heard of this. I feel like a freak of
    nature. I've lost over 120 eye lashes & eye brows.
    Thank you for your post, my heart now has problem, had the shingles , 72 day mirgraines, IC interstitsal cystitis, a cyst on ovary, a bone biopsy tommorrow on my hip, lost 40 pounds since Sept. My mouth went bad Oct 10th , yeast, ulcers, a million blisters , red & swollon. I don't eat much.
  10. kalina

    kalina New Member

    I'm so glad you found us. Many people on this board have been through some pretty bizarre symptoms, so please know that you are not alone. We will try to help you find some answers for what you are going through. I know you must be feeling miserable.

    When I first became ill, I was EXTREMELY cold. Like you, I had to wear multiple layers of clothes, blankets, gloves, etc. yet I was still so cold I was shivering and my teeth were chattering. But at the same time I was freezing cold on the outside, I felt like I was roasting on the inside. I would sweat like crazy, which would only make me feel colder, so there was no way to get relief from either sensation. Both were continuous. I also had no idea what was wrong with me, and I was scared. I saw doctor after doctor, and none of them could tell me what was wrong with me. I felt like either I had to be the only one on the planet who could be going through this, or I was going crazy! I was totally exhausted, couldn't sleep, had dizziness, hair loss and other symptoms too numerous to mention.

    FINALLY, after three and a half years of having this awful cold/hot experience etc. to varying degrees (and wearing long-sleeve flannel shirts outdoors in the middle of summer in Texas!), I was diagnosed with CFIDS and FM, although I think I had FM long before the CFIDS hit me. The cold sensitivity has improved to a certain degree, but it gets much worse if I go through a bad flare.

    I also just got some major news about a week ago: I have tested positive for hypercoagulation. This would explain the cold sensitivity and so much more. I hope you will take Madwolf's good advice to check into this possibiltiy and see if could fit your situation, as well as the other possiblities he mentioned. (Not only does Madwolf share our DDs -- he is a Physician Assistant.) Jellybelly (researcher extraordinaire) and Sujay (a Family Physician) have also tested positive and have shared their knowledge about hypercoagulation, as you'll see in your search results.

    Hang in there, Vicki! And please continue to let us know how you're doing and what you find out.

  11. Minka

    Minka New Member

    God Bless you! I feel so weird & alone. I've lost many friends .
    Today they will test me to see if I have cancer in my hip area. Please pray.I'm so scared.I just found out that my Sister has a 85% blockage in her one kidney. Her heart DR. said it was the two stents he put in her heart two months ago. Does that sound right? Love Vicki
  12. goingslowlycrazy

    goingslowlycrazy New Member

    I suffer with low temp too but not anything like you do - that must be awful!
    Let us know how you get on with the biopsy - will be thinking of you.
    Mary x
  13. sujay

    sujay New Member


    I can't add much except to urge you to pay attention to what Madwolf and Jellybelly advised. Look up hypercoagulation and mycoplasma for starters, and let us know if you have any further questions.

    Best wishes,