Burning nipples, shortness of breath, nerve pain, oh my!

[endless_august]

Hi everyone, 

I'm new here, and I thought I'd take a moment to tell my story. I have taken the liberty of bolding my symptoms for those who don't want to read my whole novel :). 

I'm a 41 y/o male and have been experiencing strange symptoms since 2016. It started with muscle spasms in the middle of my spine, then quickly progressed to weakness in my right arm. Shortly thereafter I started to experience numbness and tingling in my lower legs and feet, along with pins and needles in my abdomen. My muscles randomly twitched all over my body. I had pain around my shoulder blades and in my spine around T7/T8. Occasionally I would have allodynia pain in my lower legs, and it would hurt to wear jeans. My neuro did a bunch of tests and found nothing conclusive. My B12 levels were high after dosing myself for a long time following being tested as very deficient in B12 around 2015. Cutting down on the B12 seemed to help with the twitching. That summer I developed daily outbreaks of cholinergic urticaria on my forearms and neck (worst itching I have ever experienced!). 

After a few months, most of my symptoms went away. The only thing that remained was this weird problem in which I would turn in bed at night and my heartrate would go through the roof. It basically felt like falling into a black hole (more on that later). I also started around this time to forget words and was just generally somewhat cognitively deficient compared to what I was used to. 

Over the next two years, I was seen a couple times for abdominal pain just under my ribs. No findings from blood tests or imagery. In Summer 2018 my stomach started acting up, and I had severe flatulence and ridiculous stomach noises for months. I nearly quit my job because of how embarrassing it was. Then in Fall 2018 I started to get this strange feeling of not being able to get enough air and I developed a mild dry cough. I would get out of breath at the strangest times, which was odd since I've always been in good shape. I attributed it to anxiety, which I have suffered from in the past, and moved on. It was in January 2019 that the other shoe dropped. 

I noticed a sore, throbbing spot in my chest, and within days the sensation in my nipples changed. It almost felt like the sensation in them had died, save for an intermittent, needle-like stabbing. My chest around my nipples became very itchy and I started to have extreme soreness in my armpits. There was a near constant burning across my upper back, like someone had poured hot sauce on my back and smeared it all over my shoulder blades. Additionally, I had some mild urinary incontinence. The urine would slip into my urethra, but that's as far as it would go (thankfully). On top of it all, I just felt like h***. The cholinergic urticaria returned, I had cognitive fog to the point where it was difficult to click on something with my mouse on the first try, and I got really depressed. I have had genital herpes since about 2008, and for the next month or so I got the biggest back-to-back outbreaks I had ever experienced. I saw my doctor, who ran a slew of blood tests and did a CT of my chest. Nothing abnormal was found, save for mildly raised eosinophils. A month or two later I went to the ER with a really bad headache. They did a CT of my head. Nothing found beyond nasal polyps. 

As the months went on, the episodes would come and go, but I never truly returned to health. Then in August 2019 I reached the next stage. It came on slowly at first, but over the course of several days the fabric of my shirt touching my nipples became increasingly unbearable. I also developed a splotchy rash on my abdomen. Red, but not itchy. After the 5th day I taped cotton balls over my nipples just so that I could function. I saw my GP again, and he seemed more bemused than anything. Upon my request, he referred me to a neurologist. 

The neurologist did not know what to make of me. He did what I knew he would do, which was throw some Gabapentin at me. Not wanting to load up on some dangerous medication without finding the source of the problem, I refused. After several follow ups, I received a spinal tap in January 2020. No abnormal findings. 

Around that time I received an MRI of my cervical and thoracic spine. They found a small round lesion in the T2 vertebral body demonstrating T2 signal hyperintensity and corresponding T1 signal hyperintensity consistent with a hemangioma. I was very excited about these findings, but my neuro quickly threw cold water on them, saying the hemangioma is not touching my spinal cord, and thus cannot be responsible for my symptoms. They also found a small disc protrusion at C2-C3, but again my doctor said it's not affecting my spinal cord. 

Over the summer of 2020, I developed an intermittent pain in my rectum that's so bad it nearly takes me down to the ground. Some days it shows up, then it's gone for weeks. I assume it's nerve-related. I also developed a sharp pain in my c-spine that made it difficult to turn my head. That seems to have abated, but I expect it will be back.  

One day in recent weeks, I started getting a shooting nerve pain down my left leg, which made it almost impossible to bear weight for a full day. I called my doctor and he asked me to come in. By the time of my appointment a couple days later, I was able to bear weight again, as the nerve pain was no longer there. He was very annoyed with me and seemed to think that I was faking pains to get a quick appointment, which couldn't be further from the truth. I do not expect a follow up call from him anytime soon. 

So here I am in January 2021. I have been wearing adhesives over my nipples 24 hours a day for nearly a year and a half. I simply cannot function without them. The feeling of fabric rubbing against them is one of the most painful experiences I have ever had, and it's always there. Even with the adhesives, there are days when the nerves all across my chest are in flames. There doesn't seem to be much I can do about it but grit my teeth. My muscles still jump from time to time, and sometimes nerve pains shoot around my body here and there. On the worst days my face feels like it's burning. Sometimes my right eye gets a little blurry; it feels like I have Vaseline in it. 

When this first started, I really hoped to find someone I could relate to. Someone who literally felt my pain. I was not able to find anyone until recently when I did a search for that strange feeling of turning over in bed and having my heartrate skyrocket. That's what brought me here. Within moments I knew I had discovered what my neurologist could not. So many of you have similar symptoms to me. I only hope that what I have written here might prove helpful to someone else who might be searching. 

God Bless. 

 

 

 

[merkat30]

Ooh u really don't sound like I having fun at all have u try antihistamines incase it a allergy reaction ? That might help also change your washing powder might make lil less irritant also some ppl find aspirin helps nerve pain . It horrible have all weird symptoms no relief I no believe me do u have dysautonmia pots  ?  Do hope u find relief. 

[merkat30]

Also sound lot like fibromyalgia but am no doctor . Keep dairy of your symptoms and what u eat also any new products etc also take heart rate standing and sitting also your blood pressure.  There be several post on how do that on here .good luck .

[Pistol]

Hello @endless_august - welcome to our forum! I am so sorry you are experiencing all of these strange symptoms! --- When reading your post the only thing that came to mind is some type of neuropathy. You mentioned a history of genital herpes - a family member of mine is suffering from that and he has weird skin sensations including unexplained pain. He had shingles once and since then he has rashes and pain between his shoulder blades. --- Personally I would not be satisfied with the neurologists interpretation of your MRI - I would seek a second opinion. It sounds to me that injury in T1-T2 could potentially cause symptoms, but I am not sure. I do know someone who had unexplained pain in his chest and they told him he was seeking pain pills when it turned out that he had something wrong with his back and ended up with back surgery. Also - my Physical Therapist told me once that since you are supine during a MRI anything pressing on your spinal cord can easily NOT be touching it due to the posture but go back once you stand up. 

Sorry I don't have more to say, except that I would not simply go with the opinion of one neurologist in your case. I hope you get some answers!

[endless_august]

On 1/16/2021 at 3:06 PM, merkat30 said:

Ooh u really don't sound like I having fun at all have u try antihistamines incase it a allergy reaction ? That might help also change your washing powder might make lil less irritant also some ppl find aspirin helps nerve pain . It horrible have all weird symptoms no relief I no believe me do u have dysautonmia pots  ?  Do hope u find relief. 

Thank you, Merkat. I'll look into that!

[endless_august]

On 1/16/2021 at 4:11 PM, Pistol said:

my Physical Therapist told me once that since you are supine during a MRI anything pressing on your spinal cord can easily NOT be touching it due to the posture but go back once you stand up.

Thanks so much, Pistol. I am going to seek a second opinion soon, for sure. Very interesting about the supine MRI. I never thought of that!