1. < Neuropathy

Idiopathic Small Fiber Neuropathy - chest pressure/tighteness

Posted by sf2021 @sf2021, Apr 8, 2021

Does anyone have chest tightness/pressure around the torso associated with small fiber neuropathy? My upper torso (below the breast line) feel extremely tight like someone is squeezing the front part of the torso. Breathing is not a problem but I feel like someone is crushing me; the symptom comes and goes. I am wondering if anyone else has experienced this symptom. If so, what worked to alleviate/resolve this terrible symptom. Thanks very much in advance.

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ninette | @ninette | Dec 18, 2021

I have this banding pain on the left side since I had a spinal stroke (T2-T6) in February 2018. It's just under the left shoulder blade and goes via the flank to the front just under the breast. According to the neurosurgeon, one of the nerves there got damaged by the stroke, so now it sends pain signals when there is no pain. It also 'alarms' me whenever anything painful below the T4 level is happening, and even when I have to go to the bathroom. By now I have called it my Alarm Horn. It's annoying, since I can feel very well when something is painful (or when I have to visit the restroom) without my back going crazy and painful. I figured that maybe a denervation would help, but the pain doctor doesn't want to do that, as it would have to happen near the site of the stroke, which is risky. I have now started with acupuncture, with the goal that those wrong pain signals won't reach my brain anymore- or if they still do, I won't bother so much anymore, as the treatment also stimulates the natural endorphins. Fingers crossed!

REPLY
ninette | @ninette | Dec 18, 2021
In reply to @nanna "I had a stroke in '19 I was left with dysesthesia all on the left side..." + (show)
@nanna

I had a stroke in '19 I was left with dysesthesia all on the left side of my body. I have tightness on the whole left side. I can tolerate the arms and legs and sometimes my face and especially my hand but when it tightens up on my ribs around the breast area it makes me feel like I cannot breath. It feels like someone is sitting on my chest sometimes and it makes it hard to breath even though my oxegen level is fine. Putting an ice bag on it helps. Laying down helps me. It seem to appear when the weather changes to cold or a storm coming through or high stress. Doctors do not understand this problem because it is not a visible thing. I read it is what MS patients suffer the "MS hug"

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I have the same thing, after a spinal stroke. My neuro surgeon tells me that a nerve go damaged due to the stroke, so now it sends pain signals to the brain- even when there's no pain. I sometimes use ibuprofen cream or CBD cream on the spot, which helps for a while. Also started acupuncture.

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Maveric09 | @maveric09 | Feb 19, 2022

I was recently diagnosed with idiopathic SFN, and chest pain is single handledly the worst symptom I have. Before my diagnosis I was regularly going to the ER thinking I was having a heart attack (I'm 44). Each time they said my EKG was normal. Cardiac MRI and CT Angiogram was also normal. They kept saying it was anxiety. My doctor hasn't prescribed anything for my chest pain. Is Pregabalin or Gabapentin supposed to help? I tried Pregabalin for a bit but I think it was lowering my heart rate into the low 30s at night. My HR went back up after I stopped it. I'll try anything at this point. Has anyone tried medicinal cannabis for pain management?

REPLY
sphunt | @sphunt | Aug 8, 2022
In reply to @tappanzee "Hello - I too have idiopathic SFN with pressure and tightness around the chest and rib..." + (show)
@tappanzee

Hello - I too have idiopathic SFN with pressure and tightness around the chest and rib area. I have experienced this intermittently throughout the day for years. Whenever I have mentioned this to my neurologist in the past, he has explained that SFN can affect any part of the anatomy. I have accepted this explanation and I deal with it the best I can. I find anti-inflammatories work the best but only take them when I absolutely need them. If you receive any other advice, I would greatly appreciate you sharing it.

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So I am 68 and newly diagnosed with SFN by a telemedicine appt. I recently had with a neurologist. I am in the process of scheduling to have blood work done, and he wants to do an EMG test but after I read it does not diagnose SFN and can be very painful, I have decided against it. Apparently the many symptoms I have had for the last 15 years and longer are" classic SFN," but I either attributed them to other causes (e.g. degenerative disc disease) or I ignored them because I started to feel like a hypochondriac. After getting COVID this last January and ending up in the hospital briefly where I was diagnosed with heart valve issues I was completely unaware of, as well as developing symptoms that have not gone away, in particular, a horrific sensation of pressure on my chest and feeling like I breathe too shallow, as well as intermittent low oxygen levels (in the upper 80's) that wax and wane, all of which my cardiologist and pulmonologist told me were not related to my heart and lungs (HUH???), I decided to consult a neurologist and I am slowly piecing together that I have most likely been dealing with SFN for decades. I also believe both my mother and brother were as well but went undiagnosed. My question to you and others is, have you ever experienced low oxygen levels? It is very scary and worrisome, especially when my cardiologist and pulmonologist seem fine with it. I am looking forward to more testing and meetings with my neurologist.

REPLY
2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Aug 8, 2022
In reply to @sphunt "So I am 68 and newly diagnosed with SFN by a telemedicine appt. I recently had..." + (show)
@sphunt

So I am 68 and newly diagnosed with SFN by a telemedicine appt. I recently had with a neurologist. I am in the process of scheduling to have blood work done, and he wants to do an EMG test but after I read it does not diagnose SFN and can be very painful, I have decided against it. Apparently the many symptoms I have had for the last 15 years and longer are" classic SFN," but I either attributed them to other causes (e.g. degenerative disc disease) or I ignored them because I started to feel like a hypochondriac. After getting COVID this last January and ending up in the hospital briefly where I was diagnosed with heart valve issues I was completely unaware of, as well as developing symptoms that have not gone away, in particular, a horrific sensation of pressure on my chest and feeling like I breathe too shallow, as well as intermittent low oxygen levels (in the upper 80's) that wax and wane, all of which my cardiologist and pulmonologist told me were not related to my heart and lungs (HUH???), I decided to consult a neurologist and I am slowly piecing together that I have most likely been dealing with SFN for decades. I also believe both my mother and brother were as well but went undiagnosed. My question to you and others is, have you ever experienced low oxygen levels? It is very scary and worrisome, especially when my cardiologist and pulmonologist seem fine with it. I am looking forward to more testing and meetings with my neurologist.

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Welcome @sphunt, I've had multiple EMGs before being diagnosed with small fiber PN. I know some have mentioned they are painful and I guess we all have a little different levels of pain. I really didn't think it was that bad for any of the EMGs that I had. My Mayo neurologist used a nerve conduction test along with a physical exam to diagnose my small fiber PN but I think the most definitive test is the skin punch biopsy.

-- Diagnosing Small Fiber Neuropathy Through the Use of Skin Biopsy: https://practicalneurology.com/articles/2009-oct/PN1009_06-php

If you want to learn a little more about neuropathy, I would recommend the two following sites:
-- Neuropathy Commons: https://neuropathycommons.org/
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/

I can understand your concern with your intermittent low oxygen levels. Your upcoming appointments with your neurologist sounds like a good opportunity to have some questions answered. If you like to prepare for appointments and make a list of questions, you might really like the tools provided on the Patient Revolution website here -- https://patientrevolution.org/visit-tools.

Do you normally take a list of questions with you to an appointment? Can you give us an update after your appointment with your neurologist?

REPLY
bailey11 | @bailey11 | Oct 13, 2022

Hello -
I was diagnosed with SFN with autonomic dysfunction in 2015; however, I have had symptoms of numbness, tingling, tightness and fatigue for many years before that. For years possibly decades I have experienced tightness in the chest and abdomen. I do have a moderate hiatal hernia so I’m not sure if that’s the offender. Cardiology mentioned benign PVCs/PACs and mild left ventricular hypertrophy. I can breath fine but the tightness / heaviness is bothersome. CT scan of the abdomen was normal. The tightness is also under the left rib cage near the stomach. Could be reflux? I understand what you are going through.

REPLY
allwheeldrive | @allwheeldrive | Dec 5, 2022

Yes, I do have what seems like a cramp in the muscles over the rib cage- quite painful and difficult to 'stretch' out. I usually have to lie on my back on a couch with my knees up, feet on couch and arms back above my head and then just consciously breathe slowly through my nose. This manoeuvre is not always 'convenient'! Keeping up my Mg supplements seems to reduce the likelihood of this experience.

REPLY
elif | @elif | Apr 6, 2023
In reply to @catharbert "I have had this or something similar for about 2 years. Mine is just below the..." + (show)
@catharbert

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.

Jump to this post

Hi, I just came across this and I am in the same position right now and at a loss at what to do. Did you make progress since your last post?

REPLY
domokane | @domokane | Apr 8, 2023
In reply to @sphunt "So I am 68 and newly diagnosed with SFN by a telemedicine appt. I recently had..." + (show)
@sphunt

So I am 68 and newly diagnosed with SFN by a telemedicine appt. I recently had with a neurologist. I am in the process of scheduling to have blood work done, and he wants to do an EMG test but after I read it does not diagnose SFN and can be very painful, I have decided against it. Apparently the many symptoms I have had for the last 15 years and longer are" classic SFN," but I either attributed them to other causes (e.g. degenerative disc disease) or I ignored them because I started to feel like a hypochondriac. After getting COVID this last January and ending up in the hospital briefly where I was diagnosed with heart valve issues I was completely unaware of, as well as developing symptoms that have not gone away, in particular, a horrific sensation of pressure on my chest and feeling like I breathe too shallow, as well as intermittent low oxygen levels (in the upper 80's) that wax and wane, all of which my cardiologist and pulmonologist told me were not related to my heart and lungs (HUH???), I decided to consult a neurologist and I am slowly piecing together that I have most likely been dealing with SFN for decades. I also believe both my mother and brother were as well but went undiagnosed. My question to you and others is, have you ever experienced low oxygen levels? It is very scary and worrisome, especially when my cardiologist and pulmonologist seem fine with it. I am looking forward to more testing and meetings with my neurologist.

Jump to this post

For me the EMG test was only slightly uncomfortable. About 20 very mild electric shocks.

REPLY
leema | @leema | Apr 23, 2023
In reply to @catharbert "I have had this or something similar for about 2 years. Mine is just below the..." + (show)
@catharbert

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.

Jump to this post

Late 70's: varied pressure around torso at breast level; somewhat better when walking or recumbent;hx of Lyme disease. bones, ligaments, nerves and veins have all been affected mostly on my R side.

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