"First off, I want to emphasize that this is a long post, but I would truly appreciate it if you could take a few moments to read it. I'm writing because I feel like I'm battling this life-altering condition alone, and perhaps someone here can guide me towards a new direction.
Who I Am:
I'm a young guy in my early 20s who has been living with increasingly severe neuropathic pain and functional decline for years. Despite countless tests, doctors, and specialists, a full explanation for what's happening to me remains elusive. The pain restricts me in almost every aspect of my life, and I'm desperately searching for any way to understand its cause and hopefully find hope for improvement.
Why I'm Here:
I'm openly sharing my entire medical history here, in extensive detail, because I believe in the power of community and personal experience. Perhaps someone here has gone through something similar, knows of another case, or can point me towards a test or doctor I haven't considered. Any advice or thought could be the next step in my journey.
I'm reaching out in the hope of receiving new directions, insights, or testimonies from people who have experienced something similar to what I'm going through. I've been dealing with a complex medical issue for years, which has worsened over time, and all the tests and treatments I've tried have failed to explain its source. I'm writing this story because I believe someone here might be able to shed new light on my path.
Problem Development:
From the age of 16, I had recurrent sore throats, strep throat, polyps, and surgeries (polyps at 17, tonsils at 18). But until 18, aside from the winter, I was generally fine.
Age 18:
Constant sore throats, worse after talking.
General weakness and feeling unwell, especially after exertion.
Periodic pains in the upper body (ribs, upper abdomen, lower chest) with a feeling of heat in the body, tingling, and mild electric shocks, after prolonged talking.
Along with the feeling of heat, I had recurring weaknesses in my left arm that would come and go about once a month, lasting a day or two, disappearing, and then returning again after a month.
Extreme sensitivity to cold – cold caused immediate sore throat, feeling unwell, and even a stuffy nose.
Despite this, between 18 and 20, I still functioned relatively well: I went to school (I'm in a pre-military program), met with friends, maintained a social life, and tried to ignore the pain. I was able to walk, lift things, study, and manage a routine, even if it caused me suffering and feeling unwell afterward.
Age 20 – Onset of Worsening:
During semester break, I decided to try and "fight" back, since nothing physical or psychological was found, and get myself back to full function – I made great physical efforts hoping it would help me get stronger. But after that intense effort – pains on a whole other level were added.
The pain started on the left side: At the beginning of all the new pain stories, the weakness in the left arm that I told about above returned, but this time it did not disappear, it turned into a dull and light pain in the left shoulder, but within days it turned into a heavy and pressing pain that gradually worsened and did not leave.
Spreading tingling and numbness: The pain began to spread along the entire arm, accompanied by tingling, numbness, and stabbing pains, and reached the hand.
Repetitive process: After a week to a week and a half, the same process started in the right arm as well – the pain appeared similarly, intensified, and spread to the hand.
Absolute dependence on effort: Since then, in every muscle I use – even with moderate to heavy effort – the same process starts again:
First: dull and light pain.
Then: The pain becomes heavy, pressing, and burdensome, with tingling and numbness.
Finally: If I don't stop the activity, the pain spreads along the entire relevant area I'm straining, and remains at high intensity even after prolonged rest.
It is important to note that the pain after exertion does not come directly but a few hours later and in an unbearable way.
The pains are mainly the currents that started to spread really all over the body until they gave me Lyrica. The Lyrica that helped the pain to worsen and spread even more, but it does not return me to function because the moment I return to function the pain returns, worsens and spreads, with an emphasis on the worsening, if I lived only with pain that does not worsen, I could survive it.
But I also found that Lyrica has a certain time that affects it.
From that moment on, any moderate to heavy effort (and sometimes even just resting) became a trigger for an unbearable pain flare-up that lasted hours or days that can also continue and worsen indefinitely. I did not receive Lyrica.
My Current Condition:
Severe neuropathic pain: Burning, stabbing, dull, and pressing pain that doesn't go away even at rest. Significantly worsened by activity, even very light. Lyrica stopped the worsening.
Functional limitations: Any activity – even short – worsens the pain and brings back tingling, numbness, and severe pains. I'm limited in movement, not because of muscle weakness but because of unbearable pain that intensifies with every movement. I always manage to shower properly, not to mention brushing my teeth and preparing my own food. These are just examples of many things I can't do because of the pain.
Extreme dry feeling: Periods of extreme dryness in the body, skin, and eyes, which appear along with increased pain and tingling.
There were hours about fibromyalgia, but my condition, which is getting worse, and many other variables do not quite match it according to other doctors.
I went through all kinds of physiotherapy, hydrotherapy and all kinds of therapies and occupational healings, but again, my condition did not change and even worsened.
Tests Performed:
Neurology:
Skin biopsy: Severe decrease in small nerve fiber density (3.58 percentile for my age) – Small Fiber Neuropathy.
EMG/NCS: Mild chronic neurogenic changes in the deltoid and biceps muscles bilaterally, mild carpal tunnel syndrome on the right.
Imaging:
MRI of the brain, neck, and sacroiliac joints – normal.
CT of the lumbar spine – mild discopathy only.
Bone scan (2022) – mild changes in the tibia and shoulders (looks like effort/arthritis).
Laboratory and autoimmune tests:
Collagen disease panel (ANTI-CCP, RO, LA) – negative.
Vitamins (B12, B1, B6, vitamin E), HbA1c, TTG, CPK – normal.
HLA-B27 – negative, HLA-B51 – positive (possibly related to Behcet's).
Fabry test was taken (awaiting results).
And I took and passed many tests that did not show what the problem was.
Including psychological and psychiatric treatments.
I went through 4 different psychological treatments, and no emotional or mental problem was found that could explain the symptoms. The treatments did not change the intensity of the pain or the patterns of exacerbation.
Why I'm Reaching Out to the Forum:
I'm looking for new directions of thought, perhaps a link between the recurrent infections at a young age and the development of the disease and all sorts of other ideas and directions from other people. If anyone here has experienced a similar situation, knows a doctor who specializes in complex cases, or can recommend further tests – I would be very happy to hear.
I'm not giving up, and I'm ready to do whatever it takes to try and reclaim some of the life I had before all this started.
Thank you very much to everyone who reads, comments, and supports – any advice could be the next step towards a solution."
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