Idiopathic Small Fiber Neuropathy - chest pressure/tighteness

I have had this or something similar for about 2 years. Mine is just below the breasts and seems to run mostly across the chest from side to side in the front, less so in the back. It is a feelin of pressure. I've mentioned it to every doctor (neurologist, gastroenterologist, PCP, etc. with no answer. Finally got my PCP to order a CT scan of the abdomen. Result shows some heart enlargement. Echocardiogram and angiogram of heart show only slight thickening of left ventricle wall which ruled out cardio as a source of this symptom. Cardio also found that I have "monophasic flow" which has to do with blood in lower extremities not flowing back to the heart as it should. I recently started having very low blood pressure. Gastroenterologist did endoscopy and found gastritis and small hiatal hernia. The hiatal hernia seemed to me the most suspect for cause of this mystery feeling. So far nothing prescribed has affected it. When I exert or get stressed (notably having to explain symptoms to my doctors causes me to get out of breath) it becomes much tighter and I FEEL like I can't fill my lungs or take a deep breath, but my oxygen level is normal. I find that I am slumping over when sitting and sometimes when walking and I had suspected this might have to do with the muscles in that area becoming weaker and my posture becoming worse. I also notice that I have to eat smaller amounts of food or the pressure is worse. I'm taking gabapentin for pain and tramadol only as needed. My gastroenerologist prescribed Citrucel and Miralax for constipation and Pepcid and Aloe Vera gelcaps (I guess for the gastritis. My PCP prescribed ezetimibe (Zetia) for cholesterol control. I take vitamin d3 (4000 units a day) and supplemental Calcium (1200 units a day) for osteoporosis. I also get monthly injections of Evenity for osteoporosis. All of which are known to my various doctors. I have also been treated for post-treatment Lyme disease, (probably unsucessfully), which I think may be a factor in my neuropathy. I offer all this information in case any of it corresponds with anyone else's profile.

I am somewhat relieved to hear that others have this chest tightness - that it is not in my head. I am a little surprised it may be one effect of the neuropathy although that makes sense I guess. I am starting PT this week and I hope to find exercises to strengthen my back and correct posture among other things and see if that lessens this feeling.

Thank you to everyone who has reported this and I hope my posting helps too. I wish we could get our doctors to recognize this.

I can absolutely relate! I’ve had this terrible torso tightness for 3 years!! My doctors just tell me they have never heard of it. I already take the highest dose allowable of Gabapentin because I basically have neuropathy issues from head to toe. Wish I could just get a new spine! I’m sorry to hear that so many others are suffering, yet it’s reassuring to know that I’m not alone. Thank you. ❤️

I have Axonal Sensory PN; I’ve never been tested for SFN as my Neurologists say you can’t have both, but I sure have a lot of the same symptoms as those diagnosed with SFN on top of those I share with those of us with Axonal Sensory PN. One of my chief complaints when I was suddenly stricken with PN 7 years ago was the feeling of a tight band about 2-3 inches wide that seem to run across the upper ribcage, from beneath one breast to the other. My Neurologist then and the several others I’ve had (including Medical University consultations) all have said they have no idea why and say it’s got nothing to do with Neuropathy. A couple have suggested mentioning it to my GI’s, who do EGDs and abdominal scans & tell me to go take it up with my Neurologist again. Just one more mystery symptom that’s handled like a ping pong ball between specialists.
I think it’s more than coincidence that this tight feeling and discomfort started at the same exact time as my sudden & crippling idiopathic neuropathy, so I guess this tightness is an idiopathic issue too. Like you, it doesn’t affect breathing or oxygen saturation, but its definitely there.

I have Axonal Sensory PN; I’ve never been tested for SFN as my Neurologists say you can’t have both, but I sure have a lot of the same symptoms as those diagnosed with SFN on top of those I share with those of us with Axonal Sensory PN. One of my chief complaints when I was suddenly stricken with PN 7 years ago was the feeling of a tight band about 2-3 inches wide that seem to run across the upper ribcage, from beneath one breast to the other. My Neurologist then and the several others I’ve had (including Medical University consultations) all have said they have no idea why and say it’s got nothing to do with Neuropathy. A couple have suggested mentioning it to my GI’s, who do EGDs and abdominal scans & tell me to go take it up with my Neurologist again. Just one more mystery symptom that’s handled like a ping pong ball between specialists.
I think it’s more than coincidence that this tight feeling and discomfort started at the same exact time as my sudden & crippling idiopathic neuropathy, so I guess this tightness is an idiopathic issue too. Like you, it doesn’t affect breathing or oxygen saturation, but its definitely there.

I have the exact same symptom as you describe, the pressure band in my chest! and I almost feel I should not mention it anymore to the doctors, because any and all the doctors I mention this, don't understand or relay to it! I wish they will read these blogs! I have come to the conclusion that same as my legs and hands are becoming stiff, my muscles in my torso are also getting stiff. which brings me to question my diagnostic of CIDP????? BTW, my face around my lips is also num.

In response to sf2021, I experienced for years this tightness you describe and I finally learned it was from GERD (acid reflux). After taking omeprazole for 6 weeks, the sensation vanished. Could this possibly be a cause of the tightness you have? I hope that it is improved; I am just now seeing your post from two years ago).

I’ve often wondered if I have Stiff Person Syndrome. None of my doctors had heard of that either, even though Celine Dion has it. When I heard that she had it I almost fell over! I also foolishly thought that then, maybe, my doctors would look into it and try to help me. No such luck. I think I’m finally giving up on doctors, except for epidurals in my lower back. My last one has been very effective so far, fingers crossed. Big hugs to all of my fellow PN sufferers!! It’s not an easy road, but together we can get through it. Being in nature is definitely therapeutic. ❤️