Chronic pains due to coldness, unknown by doctors

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Hi everyonerolleyes

I am a 25 years old French woman of  and I suffer from strange skin pains that seems to be unknown neither by doctors nor Internet. I'm asking you to help me as possible, if you have an idea of what it could be so I could consult doctors.

Since I'm 12 years old, I suffer from widespread pain from the top of the spine, then spreading out in all the back, torso and when I suffer a lot it spreads everywhere but never the extremities or head. These pains are like thousands of needles planted in my skin or a feeling that someone pulls my hair very hardly without taking them off. It happens by low average temperatures (below 73°F) or by strong emotions (even if it's 95°F) causing a shudder. Every time I see that my hairs stand up on the painful areas and that emotions give me chills that are less painful than the cold shiver.

red = where the pain comes from, orange = it spreeds, yellow = when it very painfull, grey = never painfull

Younger, I thought I was more cautious than average. But the layers and layers of clothes have changed nothing, every winter is a daily suffering. My doctor did an analysis of my thyroid, everything was normal.

At 22, during a very cold work outside, I suffered martyrdom and did not understand how people with me could bear this. One of my teacher saw me crying after discussion, she confessed she had the same unexplained pain caused by coldness and no one knew what they were. This is when I realized I wasn't "cold" but "in pain" and that the real cold (I feel at my hands, feet and face) was a very sweet feeling compared to that. I researched on the Internet, and I had the idea of neuropathic pain but I find no possible origin. I have had a fall (roll back) into concrete stairs as a child, I fell like all horse riders, I was operated once (pyloric stenosis at the age of 1 month) but never had a car crash or serious stuff requiring hospitalization.

I also noticed that from time to time I also had "peaks" very lively and very short limb pain, without any reason. At completely irregular intervals. I do not know if it may be connected.

In red, when it's sometimes painfull.

After months, asking doctors, I talked about neuropathy and I was prescribed an electromyogram of limb (although I've no pain in limbs!). It was normal and I felt lost. Physicians must think I've nothing because they have no idea of what I have.

I am aware that I can live with, but it is increasingly debilitating for me and I'm afraid that it may be some kind of tumor or malformation of my spine ... What I want is a track, something to convince the doctors to make me undergo medical examinations.

Thank you so much for having read. Sorry for the translation mistakes !

smile

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7 Replies

  • Posted

    your spelling is very good hun better thansome english peoples .

    this is a very confusing condition , have you been checked for fibro 

    because it common for people to be in a lot of pain when its cold or even when its humid .

    if its not fibro. could you not see a homeopathic doctor who understand better how the body works , i believe homeophatic medincine is very big in france.

    i believe that a session of reflexology migth be helpful some times they can tell thru your feet what the problem is .. my lady told me what was wrong with my son long before the doctors did . sorry i can t be of more help

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    • Posted

      Hi ! Thank you for your advice Tiswas. I've been thinking about going to see an homeopathic doctor or also a naturopatic one (my sister-in-law is gonna have a diploma for that so I'm gonna be her patient!) because I'm not very fond of chemical medicines :p but for now I would like to exclude any serious disease. I'm gonna talk abour fibro to my doctor and see what he thinks. Thks
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    • Posted

      look up the pain point chart for fibro on the net ,and see how many if any you have , finger tip pressure placed on these points should be close to agoney normaly 13 points are enough for a diognoses of fibro . unfrotunatly everyones symptoms are differant  ,i am in terriable pain in extremly cold weather ,but also with high humidty . . so the test is not a 100% but it will give you some idea. hope your sorted soon .
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  • Posted

    Hi there,

    Am very sorry to hear of your distressing condition and the lack of a diagnosis. My sister and another friend of mine both have fibromyalgia, but their presentation is very different from yours. Their pain is predominantly muscular and not skin related.

    I have pains that I am told by neurologists and orthopeadic surgeons have nothing to do with the area of the body where the pain displays itself. They have advised that my pain is a communication problem. Sometime in my past I damaged some nerves (possibily due to the fact I fell through a roof and landed on my coccyx!) that has affected the communication between where the pain is perceived and the brain. The result is that the brain misinterprets the message. So for example, when I should feel 'pressure' against the skin, the signal sent to my brain is interpreted as 'pain'. In my case, cold weather does not 'cuase' the pain, but the colder it is, the 'more intense' the pain.

    I don't know if that helps, but am happy to share this to assist you in your search for clues.

    Kind Regards,

     

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    • Posted

      Thank you PAD, your story is, sadly, very interesting for me. I've already thought about some kind of missunderstanding of my nervous signal. When it's just cold, I fell pain... That should not be this message ! This is cold neuropathic pains and sadly, the doctors thinks this is not it because the electromyogramm was OK sad but I'm sure that hurted area not around my limbs. About the pressure on my skin, I also realized (and forgot to talk about it) that the friction of the cloths in my skin are really making the pain harder ! This is why, when I'm "cold" I just can't move anymore while everyone needs to shiver ! Not me !

      The thing I don't understand is WHY I have this kind of problem unless I had no serious accident. But I notice the fibro and keep to think that it may be neuropathy and I'm gonna ask for an IRM of my upper spine. Thanks

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  • Posted

    I'm sorry to read of you're pain symptoms, this must be very upsetting for you.. I believe you may have fibromyalgia or a symptom very similar,  Any pain is increased my cold wet weather (low barometric pressure); often chocolate and caffeine will increas pain also..  But a common reaction to acute pain can also make the body feel cold and unwell..

    A naturopath or pain management consultant may be of some help, otherwise try to find a physician that has knowledge with fibromyalgia.. 

    Best of luck finding an answer to you're symptoms Frigophobia, I too live with chronic pain 🙏 

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    • Posted

      Hello Mike,

      I have to check that fibromyalgia thing with the fingers. That's so curious that caffeine and chocolate increase your pain ! Isn't suposed to make us feel good ? :p

      Thank you for your suggestions.

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