Severe cold intolerance _ I've spent more than a half of my twenties suffering from unknow illness

[AlexT81]

Hello,

I’m a young man in my twenties and I have been experiencing an undiagnosed illness (severe cold intolerance) for over six years, that started with mild cold sensations in my left foot and knee during winter.

Over time (2 years), these symptoms worsened to severe chill pain triggered by cold exposure, even at moderate temperatures (15-20 °C), and lasting for hours or days. The discomfort is particularly intense when sitting with a bent knee, and while sleep and hot showers offer temporary relief, conventional methods like wearing multiple layers or a knee brace do not adequately warm the affected area.

Over time, I started experiencing persistent pain following muscle exertion, such as (running, lifting weights, walking long distances, etc.), which lasts for several days and resembles severe tendonitis aggravated by cold exposure.

I have no changes in skin color or visible signs on skin, but symptoms of cold intolerance have progressively affected the entire left side of my body—including the hip, elbow, neck, back, shoulder, face, genital area, and abdomen, etc—over a span of approximately six years.

I have done several medical examinations but nothing detected:

MRI for knee, hip, spinal cord, and brain

Blood tests for sexually transmitted infections, hypothyroidism, anemia, vitamins and hormones

X-ray of pelvis and lungs

Venous Doppler ultrasound of the lower limbs (left & right leg)

EMG (electromyogram) of the left leg

I have consulted (general practitioners, rheumatologist, neurologist, angiologist, sports doctor, internal medicine specialist, physiotherapist)

Current Condition summary after 6 years:

Cold intolerance throughout the left half of the body (severe mainly at joints/tendons and genital area). Cold sensations after exposure last from several hours to several days before disappearing.

I feel comfortable in temperatures equal to or above 25 °C.

Muscle pain after physical exertion that lasts from several hours to several days before disappearing.

Fatigue throughout the body.

PS: I can’t stand the air conditioner, for example, in transport means like trains and planes.

I have noticed that when I travel, the air conditioner triggers severe cold symptoms.

But if I just fall asleep for 15 to 30 minutes (while sitting in my seat in the plane/train), my body manages to make these sensations disappear.

Once I wake up, I feel normal without symptoms, but gradually the cycle of pain (symptoms) starts again.

Please, if anyone had the same problem or can guide me find out the root cause, do not hesitate. All your ideas are welcome.

Thank you in advance.

[hedgehogan]

Sorry to hear that. What have your GPs and specialists suggested what the root cause might be? Fibromyalgia could be a possibility but I am not a doctor. If you are not getting anything helpful from your current GPs and specialists you may want to consider seeking second opinions from someone who specialises in complex or rare diseases... Good luck!

[AlexT81 in reply to hedgehogan]

Thank you for your comment.

I've seen a lot of doctors, maybe not all specialistes, but I don't know where to go anymore.

The worst part is that, till now, none of my medical examinations have proven that I'm suffering.

Yes Fibromyalgia can be a possiblity but one of the doctors ( internal medicine specialist) said to me that is a very low possibility. Moreover, the symptoms have started in left knee then kept spreading all over the left side of my body during 6 years.

[hedgehogan in reply to AlexT81]

Yes it is very rare. Other possibilities are some kind of neuropathy or central sensitisation syndrome. Did the internal medicine specialist suggest what it might be? I hope you get to the bottom of it soon

[Man7Cut]

Apologies if this sounds obvious and your doctor may have already ruled it out, but has anyone suggested Raynaud's to you.

[AlexT81 in reply to Man7Cut]

Thank you for your comment.

I have no changes in skin color or visible signs on skin when exposed to cold, so it's hard to say that.

In addition, I've seen one of the doctors that knows this disease very well.

[Man7Cut in reply to AlexT81]

Thought you might have explored that already but it was worth mentioning

[Norwich1 Moderator]

Hi. What country are you in?

[AlexT81]

I'm from France.

[Norwich1 Moderator]

I asked because I know the UK health system.

Looking at your history it struck me that not thinking about your problem can resolve it - when you sleep. I wonder if a consultation with a specialist in the mental health field might produce some answers for you.

[AlexT81]

I don't understand how a mental health specialist can help? is the specialist different from what we have in France?

[Bondibabe]

Hi Alex I have been experiencing similar problems with severe cold sensations down both legs, predominantly the right one.

Whilst warm to the touch, it feels icy cold to the point of burning.

Also, like you, sitting with knees bent particularly bad. Feels like my legs are in a fridge.

Nerve conduction test, Doppler, bloods, all come back normal. Next test will be MSK clinic.

I sympathise with you especially as you're so young. Any developments since your post?