Benign Cramp Fasciculation Syndrome

Posted by StephanieT @slturley, May 27, 2020

Hello, has anyone here been living with the struggles of Cramp Fasciculation Syndrome? I was just diagnosed last week after months of horrible cramping. Can anyone tell me what has worked for you? I am interested in connecting with other people who are suffering with this.
Thanks in advance.

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@jhn48110

This isn't the same topic. I don't have cramp fasiculation syndrome as I do not cramp.....but I would appreciate others opinions

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Hello @jhn48110, I might be mistaken but I think CFS and BFS are a similar condition only the cramp fasciculation syndrome is a more severe form with the cramping. There is another discussion which is probably better for you if you want to check it out.

Benign fasciculation syndrome (BFS): https://connect.mayoclinic.org/discussion/benign-muscular-fasciculation/

Here are some reference articles you might find helpful if you have not already seen them.
-- Benign fasciculation syndrome: What causes muscle fasciculations?: https://www.medicalnewstoday.com/articles/320388
-- Excerpt from article below - "My diagnosis changed from benign fasciculation syndrome (BFS) to cramp ... I do not have amyotrophic lateral sclerosis (ALS) or multiple sclerosis (MS) and ..." - Living Each Day to the Fullest - GBS/CIDP Foundation: https://www.gbs-cidp.org/patient-stories/living-each-day-to-the-fullest/

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@jhn48110

I've done a lot of lab work and had two EMGs and everything was normal.

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Have you had a punch test skin biopsy done? That can determine small fiber neuropathy but not the cause. Helen

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My doctor passes off the fasiculations as overworked muscles. Do you agree?

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I was diagnosed with cramp Fasciculation syndrome in 2012. Horrendous stuff. I have tried various meds throughout the years. Many stopped working and many I didn’t like the side effects. The ones I have stuck with are Duloxitine, tramadol, and baclofen/tizanidine…I also love Epsom salt soaks and Zims Max Freeze roll on for cramps that won’t go away. God bless..find a good support group on Facebook helps too.

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I have been having muscle twitches all over my body. Cramps in both lower leg cramps for a year now. My nurse practioner assures me that it's not als but I'm worried. Any advice is greatly appreciated

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I too have CFS. 4 years now. I am on Ropinirole, clonazepam and baclofen. It has helped but I still get the cramping and twitches. Just not as much. Good luck on your journey.

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@jeanniekuchera123

I have been having muscle twitches all over my body. Cramps in both lower leg cramps for a year now. My nurse practioner assures me that it's not als but I'm worried. Any advice is greatly appreciated

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Welcome @jeanniekuchera123, I think anytime an unknown cause of something bothering you, it can cause a lot of stress and worry. I'm pretty sure most of us have had the same feelings at one point. Here's an article that may provide some suggestions to try --- Muscle twitch: Causes, symptoms, treatment, and prevention: https://www.medicalnewstoday.com/articles/324641

@captainanxiety8 @slturley and others may also have some suggestions or information for you.

Did your doctor or NP provide any suggestions or treatments to try?

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@johnbishop

Welcome @jeanniekuchera123, I think anytime an unknown cause of something bothering you, it can cause a lot of stress and worry. I'm pretty sure most of us have had the same feelings at one point. Here's an article that may provide some suggestions to try --- Muscle twitch: Causes, symptoms, treatment, and prevention: https://www.medicalnewstoday.com/articles/324641

@captainanxiety8 @slturley and others may also have some suggestions or information for you.

Did your doctor or NP provide any suggestions or treatments to try?

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She said that she didn't think it's serious, but I'm going to a neurologist. Takes so long to get in; that i've thought about going to ER

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Hello, this is my first post in this group. It has been a long road of doctor's visits, tests, medication's, stress, anxiety, and a lot of frustration. Unfortunately, I had to give up my job due to the spasms and medication. Since being diagnosed in 2018 it seems like any new issues I have is attributed to the Cramp Fasciculation Syndrome. I have very severe chest pains, trouble swallowing, and possible breathing issues. I have had tests to rule out cardiac, stomach and bowel, and will be seeing a pulmonologist. I was just wondering if anyone else has had this much trouble with this diagnosis.

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I have the severe chest pains and have two trips to the ER thinking it was a heart attack. I have learned to differentiate the CFS from the heart attack, I hope, lol. My body is consumed by pain, it controls me.

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