Constant twitching 24/7

Posted by samsam3030 @samsam3030, Jul 3, 2021

Hi all…looking for some advice on how to proceed here with these symptoms
Aug 2019 – chronic fatigue started following an overaeas trip to Fiji. Saw my doctor and did extensive testing for bugs and infections as well as other routine tests but nothing found. I'm 40 male in good shape with no known death issue. No diabetes or any other chronic conditions and not over weight.

This is how all my symptoms started

Dec 2019 – heart palpatations and heart racing when standing. Saw a cardiologist, worse a 48 hour holter plus a full cardiac mri. Normal heart but lots of PACs noted on the holder monitor around 1500 skipped beats a day. Cardio told me to forget about it and live with it as it's not dangerous.

March 2020 – twitching starts all over my body and becomes 24/7 constant in my calf's and feet.

Sep 2020 – constant dizziness develops and constant brain fog. It's now become difficult doing stuff like driving and working without loosing focus and becoming light-headed. I'm also now very sensitive to light and I'm starting to develop signs of sever anxiety and panic disorder. It feels like my whole CNS is in overdrive constantly.

March 2021 – I'm now getting burning feet and have sensitive toes. My feet pain keep me up at night it's really starting to scare me now.

I've seen 3 neuros who did a brain mri, spine mri and 2 nerve conduction studies. Al of which are normal with no signs of neuropath. I'm seriously thinking I have small fiber neuropathy but my neuros don't really know much about it. One said we have tested you for everything and even if you have sfn then there is nothing tey can do so there is no point having any further tests for it. I'm scared this is going to get worse and it's taking its toll on my mental health. Not having an answer to what's going on with me is giving me depression. Has anyone had constant twitching and had it turn into sfn? If so how did you get diagnosed and do you have any advice for how I should proceed?

Interested in more discussions like this? Go to the Brain & Nervous System group.

Hi @samsam3030, it can be long and exhausting road to find a diagnosis. While members of the Mayo Clinic Connect don't have the medical knowledge to diagnosis, we can assist with our experiences as you continue your search.
To help you with your search, you may wish to review these discussions that may have some relationship (or not) to the symptoms you describe.

– See small fiber neuropathy discussions in the Neuropathy group https://connect.mayoclinic.org/group/neuropathy/
– Chronic Fatigue Syndrome and Small Fiber Neuropathy https://connect.mayoclinic.org/discussion/chronic-fatigue-syndrome-and-small-fiber-neuropathy/
– Benign fasciculation syndrome (BFS): https://connect.mayoclinic.org/discussion/benign-muscular-fasciculation
– Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) treatments https://connect.mayoclinic.org/discussion/myalgic-encephalomyelitis-chronic-fatigue-syndrome-me-cfs-treatments/
– Central Sensitization – please share your stories https://connect.mayoclinic.org/discussion/central-sensitization-please-share-your-stories/

@jeanniem @greeneyedenergy @jenniferhunter and others may have further thoughts.

Sam, are you able to find calming approaches to help with the fear, anxiety and depression?

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I would see if one of your neurologist, or even your primary care would make a referral for you to Mayo Clinic. Probably Cleveland Clinic or any other major place would likely have similar resources. Originally, my neurologist did an EMG on me and said that I did not have neuropathy. She told me that the EMG was completely normal! At Mayo, they did a more thorough EMG and found large fiber neuropathy in both feet. Also, they did the biopsies to diagnose the small fiber neuropathy. They did a very complete blood work-up and tested for a few other obscure things. If nothing else, I find it helpful to have names to put with what is happening in my body. Some of my doctors have been frustrated that I have not chosen to take all of the pain medications they have suggested. I think they might feel I am wasting their time. However, it really does help my state of mind to have a name and a category 4 what is happening in my body. As pain gets worse, I will likely take advantage of some of the medications they are currently offering. For now, however, I find that most days I can tolerate the discomfort now that I have an idea of what is causing it. Also, I find that it is easier for me to give myself permission to do less than I used to do because I have a name for what is happening in my body. I have a tendency to feel lazy or like I'm imagining things if I don't have that name. Another thing to consider is chronic fatigue syndrome. That was my first diagnosis, many years ago. It started after a crazy virus that I had. The initial symptoms gear down after about 6 months but my body was never the same. At one point, they diagnosed me with lupus. Then they pulled that diagnosis back and said it was more likely an unspecified multi connective tissue disorder. And now, they tell me that I have and a irregular form of neuropathy. I understand completely your desire to have some vocabulary to put with what is happening in your body. You have every right to keep searching. Find a doctor who will listen to you and who will understand your search for answers.

P.S. I may have something similar to what you described with the twitching. I call it popcorn. 🙂

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@samsam3030 Here is a lot of information to consider that may help. As time goes on without answers, it does cause anxiety. Find something you love to do that relaxes you and make a daily routine of doing it. I was quite anxious when I needed spine surgery, and I started doing deep breathing while listening to relaxing music I loved. I was measuring my blood pressure before and after and I could drop it by 5 points. Beating my anxiety took a bit more work and I did figure it out and get through the surgery calmly. It can be done if you work out a plan to overcome your fears.

First, you may want to consult a functional medicine doctor who looks at the biochemistry of the body. For example, if you have deficiencies of magnesium or potassium, that can affect muscles as these along with sodium are needed for contractions. The body has to work to kick sodium out of the muscle cells with what is called a "sodium pump" because cells are more permeable to sodium so it rushes in and prevents the other positively charged ions of potassium and magnesium from entering because the positive charges repel each other, so the cell kicks out sodium to let the others come in. Magnesium does help muscles relax, and a good way to absorb it is by soaking in a bath with epsom salts for at least 20 minutes or a mineral hots springs in you happen to have that nearby. You could try reducing sodium intake and see if there is any effect.

For functional medicine doctors, You can use a provider search at American Academy of Environmental Medicine, https://www.aaemonline.org/. The "Find a Practitioner " button is on the upper right corner of the main page. If you are near Dallas, TX, the practice that grandfathered this field of medicine is located there, https://www.ehcd.com/

Are you taking medications or supplements that cause twitching? Do you drink enough water? Do you use caffeine? Are you under constant stress? Do you get enough sleep?

Some information on Vitamin Deficiencies
https://jnnp.bmj.com/content/66/6/804.2.full
https://www.sciencedirect.com/science/article/abs/pii/S0306987716303504
Has anyone checked your thyroid function? An overactive thyroid will cause a racing heart and palpitations.

@johnbishop who mentors in the Neuropathy group has a protocol of supplements that have been beneficial to some neuropathy patients. A lot of that has to do with detoxing. That would be another reason to consult a functional medicine doctor who does detox protocols. Have you been exposed to anything toxic in your environment or workplace?

The neurologic symptoms and brain fog are common with Lyme disease which can mimic many different diseases, and that is often missed because the tests are inaccurate. Chronic Lyme is hard to treat and a short course of antibiotics is not enough unless you are catching it right away in the early stage. The lab with more accurate testing is https://igenex.com/ This is a problem when doctors think it has been ruled out, but in fact it was missed and Lyme and the co-infections can hide behind biofilms inside the body to evade antibiotics. The Western Blot test is not very accurate and does miss diagnosing Lyme Disease. That is a costly mistake to make if Lyme Disease goes un-diagnosed for years. The doctors who are the experts at treating Lyme are in the ILADS group (International Lyme Disease Association). Lyme destroys white blood cells that are your immune system.

Here is a lot of Lyme and associated infections information.
https://www.vox.com/the-highlight/2019/6/18/18677511/lyme-disease-diagnosis-health
https://www.lymedisease.org/lyme-basics/co-infections/babesia/
Here are some links that describe the challenges with testing for Lyme disease which isn't just one specific organism causing an infection, but many. The accuracy of a blood test is also affected by how long it has been since exposure to infection, and if the body has mounted an immune response against it, and how that would change over time. The Igenex test covers more bands in comparison which you can read about from the link below. For some of the co-infections that accompany the Lyme bacteria, there are no diagnostic tests and the doctor evaluates the patient physically in addition to testing they do. They might test to see how many specific white blood cells are responding to an infection because Lyme can destroy the white cells that are trying to protect the body by fighting it, and the test would show a reduction in the white cells.
https://www.ilads.org/research-literature/controversies-challenges/
https://iladef.org/education/lyme-disease-faq/
https://igenex.com/the-igenex-advantage/
Lab in Germany https://www.arminlabs.com/en

Here is a link to ILADS (International Lyme Disease Association). https://www.ilads.org/patient-care/ilads-treatment-guidelines/

Here is the Lyme treatment guideline
https://lymediseaseassociation.org/wp-content/uploads/2009/08/BurrGuide200810.pdf
There is an educational documentary call "Under Our Skin" which profiles several patients and their treatment and controversy about Lyme. https://underourskin.com/

Here is a link that discusses ILADS antibiotic recommendations and for recommended number of days, scroll until you find it.
https://www.tandfonline.com/doi/full/10.1586/14787210.2014.940900
Exercise helps because it raises the effective oxygen perfusion rates in your tissues, and oxygen can be toxic to bacterial infections. Getting your Vitamin D levels optimized helps because that increases your immune system response.

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