Ulnar pain for years, worsening in warm conditions

Posted , 3 users are following.

Hi, i'm desperately seeking your help as my Doctors are not able to find proper solution (although they were dedicated!).

My main symptom, in short, ist ulnar pain. The pain itself is located around the Pinky Fingers (both sides) and the elbows up mostly pain free.

The pain started to slowly build up over time I have been partially in pain for about seven, eight years. As I were typing and programming on the computer a lot, I thought that's the cause of the pain. A few break days made the pain go away, usually. But it was spiraling up and was accompanied with dry eye pain. In summer 2015 the pain was so intense, I finally seeked medical help. A few months later, I was diagnosed with ulnar nerve entrapment at the elbows.

After a few months of preserving therapy and vitamin supplements, the ulnar entrapment could not be measured anymore, but the pain remained.

Now, few years later, I really have found nothing more than some kind of pain routine:

In warm conditions (threshold about > 22°C), my knees and elbows start to feel swollen. A few hours later, the nerve pain kicks in. If I’m staying longer in the warm conditions (like hot weather, in the sun), I experience pins and needles sensations all over the the body, but mostly in the neck/shoulders and around the knees. Some more time and I start trembling like I’m totally hypoglycaemic (which I am not).

So winter months and avoiding heat (like baths) improves the situation over time (but it worsens quickly in heat!). Yet the hands are very sensitive by now. Resting the hands on the table for a few minutes brings up (a different type) of pain. Clicking the mouse too often brings up index finger pain...

This winter, I avoided heat as much as possible and was always dressed as little as possible and the main mostly went away. Spring time, temperatures rises, and boom, worst two days of the year so far!

What have we found so far:

- Celiac disease by antibodies (moderately high, 1.5 years strictly gluten free)

- Thyroglobulin antibodies (now normalized)

- Weight loss after going gluten free (from 85 kg to 68 kg by now - I’m eating like hell however)

- Frequent muscle pain accompanied with heavy tiredness, mostly in the legs, since going gluten free

- Enlarged spleen

Blood work:

- White blood cells are frequently a bit too low

- MCV is frequently on the upper edge, sometimes a bit too high

- Vitamin D was way too low, increased now but can’t keep it high with supplements though

- Selenium was somewhat low

- Q10 was somewhat low

- ANAs are at about 1:160, with other rheumatoid tests being negative, rheumatoid factor (igA) sometimes quite high

- Diamine oxidase is way too low but I do not have histamine related symptoms

- Creatine kinase a little bit increased when muscle pain occurs

- Complementary medical doctor diagnosed heavy metal intoxication (chelation therapy done and extended)

Imaging:

- MRI: Brain, knees, hands mostly normal, somewhat increased fluid build up in the elbow

- Full body PET scan: slightly increased tracer uptake in the small intestine

- Colonoscopy: mostly normal with signs of gastritis

We made a ton of tests, I tried a lot of supplements and have spent thousands of euros on phyiscal therapy, chelation therapy, rheumatologists and private doctors.

Finally the pain has cost me my financial success, my girlfriend of 10 years, my friends, … Although I'm very optimistic, I'm on the edge to hell. I'm really afraid of the summer and I'm seeking your help now as some kind of last resort!

So go ask me anything, bring any idea to the table, I'll be glad for any improvement!

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  • Posted

    Wow I am experiencing very similar symptoms as you but it seems like you have done way more tests than I am.  Pins and needles all over the body, my hands seem to be more effected, especially when I type or use them I feel some sort of pain, feels like someone is poking me with a knife kinda pain and burning sensations. Did you do EMG /NCT? Did you test for any allergies ?? Skin biopsy

    I feel lost aswell, as doctors think i’m going crazy and can’t find anything 

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    • Posted

      Hi Nicole. Yep, emg with ulnar entrapment as an outcome. NTC? What does it stand for?

      I do not really know how to describe the pain. It is deep pain but not responsive to touch. The contemplate doctor found further food intolerance (dairy, egg, ...) because of high igG antibodies, which is a controversial theory and I do not believe it very much.

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    • Posted

      Nerve conducting test sorry I meant NCT.  So weird how so many tests were done but no answers to the real problem. Sorry ur going through this I totally understand. I’m going to see a neuro and ask for maybe some further tests since my EMG and blood were normal. Would you recommend me test for any allergies ? Or biopsy ?
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    • Posted

      Biopsy would be interesting, but what would be the outcome? Small fiber neuropathy? Therapy would be tricyclic antidepressants or antiepileptics, which do not address the cause. Therefore I pretty gave up with neurologists as it seems the cause (or better: the proper treatment) is not purley neurological. Also had a lumbar puncture without significant result. I don't believe much in the allergy theory eighter as I have avoided a lot of different types of food. Also tried anti histaminica and and diaminoxidasis, without any real effect.

      I'd recommend an immunologist (for Celiac and thyroid) and avoiding any temperatures above 22°C. Also long as I'm freezing I do not have nerve pain, though it's not comfortable at all. But I'm not really here for recommending, as I am not able to find a proper solution eighter ;-)

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  • Posted

    I fell on my elbow 40 years ago and I have neuropathy there which comes and goes. I wonder if I damaged the ulnar nerve which runs underneath the elbow.  Heat massively helps but cold or damp weather makes it so much worse.  Heat is the only thing that works.  If you can’t get your vitamin D levels up enough with supplements, try eating foods that are rich in this vitamin and try to go out in mild sunlight.  Both these will help the deficiency.

    It also sounds like you have repetitive strain injury or maybe carpal tunnel syndrome which are common with a lot of computing.  Ask your doctor about this. 

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    • Posted

      Hi, it's on both sides, no injury history afaik.

      Vit D: tried that. It's somewhat on an acceptable yet low level. Have to check it again soon.

      Have spent a year in respect to RSI etc. Bought new desk, chair, improved my posture, make yoga, ... No improvements. In my sense it is quite unrelated to "work" but reacts quickly to heat.

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  • Posted

    At least some hope. A special neuro ultrasonic imaging showed am axillary arch (which is seldom but possibly not the cause, though not making it better), but more important, also an huge anconeus epitrochlearis muscle. So the muscle will be injected some botulinum toxin today to decrease it's size and it will then possible  by removed by operation.

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