Could these symptoms be related to SFN?

Posted by jmf123 @jmf123, Dec 24, 2024

Hello,

It’s been a brutal year with no real light at the end of the tunnel. I’m hoping someone can help me understand my symptoms.
I’ve had significant pain that usually presents itself as a burning sensation that is mostly in my ankles, lower legs and chest. It does move to other areas (even my face). I will also get cold sensations in the same areas, tingling and deep muscle pain.
I am having additional symptoms that at times are far more debilitating. I get a light headed, almost dropping feeling and a feeling of pressure between my eyes. I also at times feel like I have hot water in my ears and a very uncomfortable muffled, flutter like I’m waking under water. I now have wicked tinnitus in my right ear.
I am waiting on a punch biopsy to see if it’s SFN. All bloodwork was clean. Has anyone else had similar symptoms along with neuropathy? If so, what was your diagnosis?
Thank you so much for your help.

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Those symptoms could be related to small fiber neuropathy because snf can affect the autonomic nervous system
I'm sorry you are having such a rough year. May 2025 bring you diagnosis, treatment and resolution.
Everyone is busy celebrating. You hear more after the first.
Welcome to Connect and Merry Christmas.
https://www.frontiersin.org/journals/pain-research/articles/10.3389/fpain.2021.810809/full

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@jmf123
I have SFN and many of your symptoms sound familiar.

Have you also seen an ear nose and throat specialist? If not, you may want to consider it.

Have you had your thyroid checked? You would need T3 and T4 plus TPO checked, not just TSH. Also, have you had a full iron blood panel, not just basic panels? Many things are missed if they only do basic blood panels.

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Hello @jmf123, I would like to add my welcome to Connect along with @dlydailyhope, @gently and others. You might want to checkout the discussion started by @cwallen9 who also mentioned some of the same symptoms.

-- Ear Tinnitus and Pain with Neuropathy: https://connect.mayoclinic.org/discussion/ear-tinnitus-and-pain-with-neuropathy/

Have you had the skin punch biopsy yet or are you waiting for an appointment?

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Some of your symptoms are familiar to me and want to share my experience with these scary symptoms....
Problem 1. -SFN (small fiber neuropathy) -burning in my lower feet, needles, pricks and pain…mostly around ankles area and tightness in my lower feet. Also, SFN caused coronary neuropathy manifesting by dizziness, nausea, scary heart palpitations (I felt like my heart wants to stop) and whole-body tremors (I felt like an electrical current went thru my whole body…. especially during night time) and a lot of fatigue…
Treatment. I took dexamethasone (on my own initiative) and heart palpitations, tremors, nausea, fatigue are gone…then I went to a clinic who does SANEXAS treatment for my feet symptoms (Medicare does not pay for this)..I’m already feeling way better with my feet too.
At the same time, I brought my A1C down to 6. I also did all test on my own cost (as one poster here already mentioned). minerals, vitamins, iron absorption, B12 and folates thyroid, prostrate, omega 3 level etc.). Lab crop will do all these tests without doctor orders. It’s amazing how just one low level vitamin or mineral can cause havoc in the body (tinnitus, inflammation, dizziness etc.) …
Problem 2.ear fulness, tinnitus, dizziness frontal sinus pressure could be caused by TMJD (temporomandibular joint disorder) or inner ear inflammation, or TMJ structure derangement.
In my situation the TMJ discs were displaced both sides and went thru a surgery to fix it.
Solution. A head MRI with and without contrast will be able to pinpoint or clear up the cause of your head area symptoms…
PS. Your chest burning is scary…I did not experience this… You should see a coronary specialist fast.
Hope this help…

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I have SFN, confirmed by biopsy. Pain used to be my biggest issue. Lately I have developed some of the symptoms you describe - light headed, dizzy, tinnitus. It’s been pretty debilitating, and unexpected. I rely on excellent physical therapy help, and lots of communication with my medical team. My PT is working to relieve tension in my shoulders, neck and jaw. I have MRI of the brain and c-spine scheduled. I’ve been dealing with this daily for 4 months, and am ready for a change!

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@dlydailyhope

@jmf123
I have SFN and many of your symptoms sound familiar.

Have you also seen an ear nose and throat specialist? If not, you may want to consider it.

Have you had your thyroid checked? You would need T3 and T4 plus TPO checked, not just TSH. Also, have you had a full iron blood panel, not just basic panels? Many things are missed if they only do basic blood panels.

Jump to this post

Thank you for the reply. I hope you feel better soon.
I know I had everything under the sun checked with my blood work but will check what was checked with the thyroid. Thanks!

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@julbpat

I have SFN, confirmed by biopsy. Pain used to be my biggest issue. Lately I have developed some of the symptoms you describe - light headed, dizzy, tinnitus. It’s been pretty debilitating, and unexpected. I rely on excellent physical therapy help, and lots of communication with my medical team. My PT is working to relieve tension in my shoulders, neck and jaw. I have MRI of the brain and c-spine scheduled. I’ve been dealing with this daily for 4 months, and am ready for a change!

Jump to this post

Thank you. I hope you feel better.
I had an MRI a year ago and it came back ok. Same with my spine.
I’m glad physio is working for you. I went and the person was great but unfortunately it hasn’t helped in my case.
This is definitely getting old. The mental piece is extremely difficult. My 9 year old misses her father 🙁

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Update
My neurologist called today and said skin biopsy came back negative. While that is good news, it’s also frustrating because he told me there is nothing else he can do and to work with my GP. I’m so upset. All bloodwork has come back ok. MRI of the head a year ago was ok. MRI of the spine was ok. Is there not something else that can/should be done to investigate the pain I am in? The pain is intense and it’s extremely difficult to function. My face burns and at times feels cold, my legs, ankles and feet are burning but my feet can feel a cold sensation and my body throbs. My sinuses and ears are impacted as well and the insomnia is unreal. I’m floored that I can be told there is nothing more that can be done. Would a spinal tap help? These are clearly nerve related issues.

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It is so frustrating to have something unexplainable. I too had a normal biopsy and MRIs and bloodwork showed nothing, but I had/have intermittent symptoms. I initially was told to take a pretty high dose of magnesium, as well as vitamin B supplements. I am not a doctor, but I will tell you that I had terrible itching throughout my entire body with those. I simply could not imagine living with that level of itching for the rest of my life. I took myself off of both the magnesium and the B vitamins and then re-introduced each separately. After this self- run trial, I discovered that the culprits of my severe itching were a reaction to the vitamins. I got the blessing of my neurologist to not take these things, and he was proud of me for the way I conducted my trial! I hope you find some relief. Keep us posted.

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