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Does Small Fiber Neuropathy also cause muscle spasms?
Hello, my first post here. The question I have is, "Does Small Fiber Neuropathy also cause muscle spasms?" Sorry in advance for a long explanation. I didn’t want to leave anything out. Here's my background. I am a Latino male. age 49. I use to get a needle like jab in my feet maybe once every few months. Never thought much of it. My mother’s side has many people with diabetes, which my older sister now has. I thought it might be pre-diabetic signs. In 2016, I had a great deal of stress from a job, and then starting a new job and also moving to a new state and finally my house. My manager announced a business trip to China. Quick tangent: I lived in Asia for 14 years and at the end, I developed a fear of flight. And so, this trip was the first plane ride since coming home. To say I had anxiety was an understatement. As the the trip approached, I took up restorative Yoga to relax. I felt my muscles weak and shaking. At this time, I complained about muscle aches to my doctor and he removed me from a statin I was taking for Cholesterol. I understand statins can impact muscles. He thought I had ‘developed’ an intolerance to statin. Some people that came off statins have mentioned muscle problems for several years. (So I read). The trip went off without issue and I was very excited I managed. When I got back though.. I had a lot of pain in my legs. My doctor said to me that it might have been pent up anxiety/stress that was delayed. After a short time back, I noticed my feet started to tingle. At first the right foot, then both. My left toe was very stiff in the morning. I started to document this symptom. Not much longer, I started o feel more tingling in my calves. I then started to get little tiny spasms. I call them spasms, but I don’t really see the muscles moving. I went to Neurologist (#1) and they examined me in the room and said I showed no signs. But they did a EMG test and the result was unremarkable. Months went by and the spasms moved to my upper body. When I took a shower, some parts of my body felt like I had walked in from a snowy day and put my skin under hot water. Sometimes I felt insects on my body but there were none. I changed my Neurologist (#2). The new neurologist said I seem to have neuropathy in my legs. She put me on Gabapentin. I started to get a lot of anxiety because I’ve never really been sick outside of a torn ACL from sports. I lead a healthy life, though don’t exercise anymore due to the ACL. I drink very very little and never smoked. I don’t eat a lot of meat or fried food. As the months went by the sensations grew stronger. I went to Rheumatologist (#1). They said my feet pain were due to flat feet, and see a Podiatrist. So off I went to Podiatrist who sold me OTC shoe inserts. Yes, I had flat feet and wore orthopedics in my 20s, but flat feet couldn’t explain the rest of my symptoms. So I went to Rheumatologist (#2) who I use to see back in my home state. After much bloodworm and office visits, she felt I had Seronegative Spondyloarthritis. She felt that would explain my non-neuropathy symptoms. She sent me to a Rheumatologist (#3) that specializes in muscle diseases. He looked over my record and said I don’t have any disease related to his field of Rheumatism. He said I might have anxiety causing this, a nutritional imbalance or fibromyalgia. My Neurologist was a general one and said I should go to one that specializes in muscle diseases. So she sent me to a university hospital to see Neurologist (#3). After examination, she felt I didn’t have any issues. She did some blood work and nothing showed up. And each few months I could feel my body pick up a new symptom/or current ones spreading. I related the EMG and it was unremarkable. I then has an autonomic test with skin biopsy. This test showed I had Small Fiber Neuropathy. She increased my Gabapentin dose. Due to the distance, it was difficult to go to my Rheumatologist so last week, I went to the same university to see a Rheumatologist (#4). He said I did not have Seronegative Spondyloarthritis and that Rheumatologist (#3) was completely wrong. He concurred with Rheumatologist (#2) that I did not have any inflammatory disease. He said it was 100% neurological.
I should mention I picked up a chronic cough about 3 years ago. The pulmonologist had me go through various tests and hasn’t found anything wrong. During the past year, I had two cases of bronchatis. I was treated with Prednisone. It cleared up my cough and heavy chest feeling but…surprise..I also noticed that all my symptoms were greatly reduced. I thought it a fluke. Then a few months mater I got bronchitis again and so back on Prednisone I went. Again, my symptoms nearly went away. It was bliss! I mention this to my Neurologist and she wasn’t sure what to think. She said that my Small Fiber Neuropathy is the cause of my tingling, burning and stabbing pain, but it doesn’t explain the spasms. Thus, the reason for my original question. My understanding of neuropathy is that for some people, there is no underlining cause, and for others, there is an underlining cause that has created it, such as diabetes. With my chronic cough, and responding to steroids, along with the Small Fiber Neuropathy, my wife was wondering if I might have Sarcoidosis. But the pulmonologist doesn’t think I do.
So that brings me to how I feel recently. Over the course of a few months, I went from 186 to 167 pounds. Only change to my diet was to avoid sugar in my coffee. Not much else change. I just did a full abdominal ultrasound and all was fine. I did an endoscopy and colonoscopy last year and they were fine. My blood pressure is great. If you look at me, you’d never know. A few weeks ago I started to feel burning in my thigh muscles and calves. This is new. My legs feel weak and I really feel like the weight lose made my leg muscles smaller while my belly has the same size.
I am about to make a huge life changing decision in switching jobs. The new job is a dream job but with more pressure. My current job is much less pressure but not as satisfying. I actually need to decide next week! I’m at a loss on what to do.. My health isn’t getting better and so I worry if a job with high stress will be the best thing. I don’t know if I should believe all my symptoms are 100% neurological. Perhaps all my anxiety has manifested into physical pain? Based on my history, are there any specialist that is recommended or potential causes besides the Small Fiber Neuropathy? Thank you so so much for listening.
Carlos
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Good luck to you Carlos. You've been on the merry-go-round they call western medicine. You've helped support the high incomes and bloated revenues of the HMOs. Doctors too often don't listen or even try to make sense of all your symptoms but are writing out prescriptions or referring you to a buddy in a related discipline within 5 minutes in order to maintain the cash flow of a model that no longer serves the patient. Yes, this commentary is cynical but your experience is far too common these days. I welcome the day when we'll be talking to computers which, ironically, will be better listeners and much more comprehensive in their diagnosis. After years of frustrating run-a-rounds like your, I've turned to the Internet for help.
Stress can be a killer and can trigger or manifest as dysfunction in innumerable ways. My question to you is whether your stress is something that makes you feel alive or something that keeps you from sleeping at night. Does your stress involve fear that you cannot handle the job because of health issues or is it related to some deeper feelings of inadequacy. If it's the latter then a good therapist can help you resolve those issues. If you feel competent to handle the new job challenges but your health issues appear to be a wild card that threatens your ability take on new challenges, then you may be better served if you can find a resolution to your medical issues.
My search for answers has turned to diet and environmental toxins as well as medical avenues my prescription writing doctors have failed to mention or consider. As you will find on this board, there are many antecedents to your symptoms. It's surprising and depressing to find out how many environmental toxins there are in our environment and in medical practices. Levaquin, an antibiotic produced and marketed by Johnson and Johnson, cause PN in some people. Mercury in dental procedures is a neurotoxin as is the aluminum and mercury in vaccines. There's actually a long list of possible culprits that may trigger your symptoms according to the "Internet" doctors that are hated by mainstream practitioners as well as toxic agents in our foods and home environments.
I know you are as desperate for answers as the rest of us, but I would take some time in your search for help. Maybe you can get an appointment at Mayo or with Dr. Hymen at the Cleveland holistic clinic. But I suggest you be cautious with whom you open your wallet. There are far too many in the medical community and adjunct fields that are willing to take your money. This pursuit can be very costly and damage your hopes in your ability to recover. Best of luck to you.
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1 ReactionHi Rich, My husbands doctor also told him the tingling could be allergies. If it doesn’t go away he wanted him to be tested for that. Sounds unlikely but possible. Rita
Hi Carlos ,
You have really been put through the ringer !! Like you and so many we are navigating what is happening to us . Yes it can be frustrating as I have seen many doctors and still I do not have any answers. I don’t believe anyone should be telling you which job you should take. I can only say for me and my older brother were lucky to find something we had a passion for and for that I am very grateful. My other two brothers hated what they did their whole life and I saw what that did to them to be so unhappy till the day they retired . You can learn coping skills to deal with stress as I am doing to. If your lucky enough to make money doing something you love well it’s not really work . Good luck to you in your decisions and your journey to happiness and peace
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1 ReactionHi Carlos, my heart goes out to you. 1 year ago I was diagnosed with sudden (overnight) ideopathic onset SFN and was eventually prescribed Gabapentin 3x/day. I cut back to 1/day at night since I couldn’t tolerate it well during the day. It has gradually gotten somewhat worse but effects mainly my hands and feet which tingle and burn. I do get cramps in my feet, legs and occasionally hands and have also noticed facial ticks. I do think stress and dehydration play a role. I have been taking R-Alpha Lipoic Acid 300mg 2/day and 2-3/week soak my feet in epsom salts. I do believe these help. I wish you and all others good luck, this disease is finally gaining some attention.
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2 ReactionsHi @helennicola, welcome to Connect. Thank you for sharing your diagnosis with small fiber neuropathy and what has helped you. I have idiopathic small fiber peripheral neuropathy that I've had for 20+ years. I shared my story in a post earlier on Connect here:
https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985
I only have numbness with my neuropathy but I think you are correct about stress and dehydration playing a large part. I think it's important to drink a lot of water but also feel it's important to keep your skin moisturized with a lotion particularly on the areas with neuropathy since the nerves are close to the skin. Staying hydrated also helps with the leg cramps if you get those.
What is the hardest symptom for you to deal with ? For me, it's the numbness and having to be careful with balance when I stand after sitting for awhile or just getting up in the morning.
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1 ReactionI have SFN and in November was given the diagnosis. I also have 3 small brain lesions in 2 frontal temporal lobe and one in left temporal lobe. About a year ago I had an episode where Ioss my vision and had extreme heaviness start from my head down to my toes. My cognitive function declined, heart rate a d BP spiked. ER doc thought it was TIA. 1st nuerologist did not, 2nd nuerologist didn't either. MS thought it was all psychological.
EMG was normal, no one wanted to help me. Foot surgeon, rhumetology, neuropsychologist, eye doc, all said it was neurological. It was the foot doc that pushed for EMG. After that came back normal my 1st nuerologist released me. MS doc thinks it may be early stages of MS, but referred me to neuromuscular doctor. I had to the outside of my hospital system to get SFN biopsy. That came nack postive for moderate to severe SFN. Doc tried me lyrica and it didn't help. I take gabapentin now 300 mg when I can tolerate it.
I get what I would call muscle stiffness in my feet and ankles after resting. I have to walk it off, its painful. I have spasms I'm my hands and arms where i get severe pain and my hand or arm.goes limp. Happens in my ankles to when I walk. The worse is the pain i get in right chest area that radiates to my upper right back that feels just like a constant throbbing and squeezing. It's only happened twice. I get terrible facial tingling and vibration and sudden jolts of hot pins in my eyes and around my mouth area. Every now and then I get a tingle wave from head down or leg up. I get bloated and nausea at least once a week.
I get the traditional SFN pain. The more I move the worse it is at rest. If I rest I still have pain just not as intense as when I am.active. I am 44 years old with a great career, husband and two beautiful little girls 4/6. I don't know what to do anymore. No one is helping me understand this or why it's happening. Since the original episode ER doc thought was a TIA I have gotten worse. The tingling and burning and muscle stiffness and facial tingling started several years ago, but it was minor. It has progressed a lot since 2013.
Anyone out there can shed light on this?
Tricia
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2 ReactionsThis was my foot two weeks ago. It froze in stiffness and was very painful for about 15 minutes before my husband woke my foot up and got me walking.
Tricia
Lastly my cognitive issues have worsen, I lose my words or see them in my mind, but can say them, I slur if I talk.too much so I avoid presenting at work.when I can.short term is shot. Long term still great. I forget my thoughts and suddenly days or hours after they come back.
Tricia
Good evening @tricia7681: That looks just like my toes. And sometimes the second toe laps over the big toe and I have to lift it to unstick it and get it off. That is a bit like helping the toes come unglued. I have to help them bend and then push one off the other. I have times when my left knee just doesn't get the message to "stand strong". It collapses and I have to give it a good shake and a few rubs...then it holds me up. My opinion is that these are neuropathy related. I have SFN, (small fiber neuropathy), and these signs of the brain sending out some wrong signals happens multiple times a day. I have to make sure I am steady before I walk.
While the tingling, burning, and muscle stiffness seem to have been around awhile you have new issues with what you indicate may be cognitive decline. It is known that SFN can affect any place on the body that is connected to other parts and all of them have nerve pathways. So, if the nerve fibers are disappearing and not being replaced....then it is understandable. We can learn to cope.
Some of us have been helping each other with cognitive issues. I find that when I have a thought ready to go in my head, and then interrupt that thought to go somewhere else or pay attention to another question, I lose the first thought while it is right there on the edge of my tongue.
You are so young and with growing children. Get ready to be at the head of the SFN class or at least the youngest one in the class. Hang in......let us know what feedback you get and what questions you have. We are sincere and genuine. We gladly share what we know about being a patient or a caregiver for a patient.
Just tell us what we can do now? If that doesn't work....then ask Santa. (Happy Hollidays).
May you be safe and protected from inner and outer harm.
Chris
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3 ReactionsTricia I am so sorry you are going through this. On a side, totally stupid note, though, you have beautiful feet.