Connect
My experience with Small Fiber Neuropathy
Hi there. Thank you to all the people who support this forum.
I believe I have Small Fiber Neuropathy. It's been a struggle to get doctors to believe something is wrong. I have one now that believes me but believes but this seems to be all new information for her. I met with neurologists and they said I was fine. I passed all their normal tests and they seem to imply it was psychological. I'm still trying to get tested and get an official diagnosis. It's possible I'm wrong but given the symptoms I have it seems unlikely.
I was a drinker for years. I brewed beer and drank daily. I also have had high cholesterol for many years. The drinking certainly affected the cholesterol. A couple of years ago I started getting very sharp stabbing pains in my toes in the evening. I can't say if it was when I was drinking or not because I know these symptoms are more common at night and that's when I drank. I started to get pins and needles shortly after mostly in my feet and occasionally in my hands. I would get a stabbing pain in my thigh and foot at the same time.
A few other notes:
1. I have impaired fasting glucose in the pre-diabetic range.
2. I've had high cholesterol for many years. It's getting better with diet and exercise.
3. History of alcohol use. I've almost entirely quick alcohol. I've had a couple of drinks in that last couple of weeks but I may quit entirely.
4. I haven't found much that helps except for reducing alcohol but lately even that doesn't seem to help.
5. It's my perception that stress increases the symptoms.
6. Exercise seems to help. Even just moving around. Switching to a standing desk as well although I'm not sure.
I'm mostly just sharing to see if there's anyone who can benefit or help me. I'm doing a lot of reading right now and don't have many conclusions.
Like
Helpful
HugInterested in more discussions like this? Go to the Neuropathy Support Group.
Connect
Can anybody tell me if they experience muscle twitching with small fiber neuropathy
@laureen8844
Hi, and welcome to Connect. There is a discussion on Connect by people suffering from twitching. I specifically remember a post by @miserablebugger (mostly due to the memorable member name). Not sure how many of these people also have sfpn though. Take a look:
https://connect.mayoclinic.org/discussion/benign-muscular-fasciculation/?pg=3#comment-441063
How long have you been suffering from neuropathy and what have you been doing for it? Best, Hank
-
Like -
Helpful -
Hug
1 ReactionHi Hank. Thank you for responding. I actually have all the symptoms of neuropathy and they seem to be getting worse but I went for an EMG 2 months ago and they said I didn't have neuropathy or ALS and I was quite relieved . It actually came back perfect. I automatically assumed it would be neuropathy as they literally checked for everything else(MS, Lyme disease etc) . The Dr. also said he really didn't see any sign of Neuropathy either in my EMG which quite surprised me. I have sharp nerve pain, foot cramps, burning sensation in my feet and legs, and muscle twitching . I have a history of being a big drinker (from the business I was in so it would make sense that it was alcohol neuropathy, but I no longer drink) . Also related I had a previous herniated disc in my C7 vertebrae several years ago. After I asked my Dr. about neuropathy and he said no to that as well I asked him about SFN as it is more sensory and wouldn't show up on and EMG. He wasn't really that informed about SFN at all which was a bit concerning but I told him they can determine by a skin biopsy. On a side note I am not really impressed with the many neurologist I have seen. They seem to be guessing . I know its a hard disease to diagnose but they really seem to be guessing at things and not informed about the different possibilities. . The one thing that is really scaring me is the muscle twitching . I have it all over my body and it seems to be getting worse . It started in my arm that had previously been affected by my C7 herniated disc but now I have them all over my body. It isn't constant and comes and goes. I would say the twitches are light in nature and they don't affect my sleep. I get them when I am watching TV or in a resting position,. That is why I asked about the correlation between SFN and muscle twitching . Hank one other question I could use help with is how common it it for an EMG to be wrong the first time. My Dr' s were quite confident that I had no sign of ALS but then you read on the internet of may instances where first EMG was wrong . Thank You so much for your help Hank. I am literally a nervous mess.
-
Like -
Helpful -
Hug
1 ReactionHello @laureen8844, I would like to add my welcome to Connect along with @jesfactsmon and other members. It's good to hear you were not diagnosed with neuropathy. A pinched or compressed nerve can also cause neuropathic pain. There is another discussion you may find helpful on Myofascial Release Therapy. @jenniferhunter may also have some thoughts on your symptoms.
Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
Have you thought about getting a second opinion from a major teaching hospital or multidisciplinary hospital like Mayo Clinic where they coordinate patient care between different doctors/specialists?
-
Like -
Helpful -
Hug
1 ReactionHi Laureen, sorry for your issues and lack of a diagnosis. It does sound like SFN and your biopsy should confirm or deny this. I also get the muscle twitching at times when sitting and reclining but it stops after 10-15 minutes. I think this is a common symptom. I do think that many if not most neurologists are not that knowledgeable regarding neuropathy but hopefully that is slowly changing. In the meantime most of us are having to figure out how to deal with our symptoms; knowing the cause does not always change anything. Pain meds, diet, supplements, and exercise help. I wish you the best going forward and try not to worry too much until you know what is causing your issues. Helen
-
Like -
Helpful -
Hug
2 ReactionsThank you so much Helen for your kind response. Would you mind if I ask are you suffering from SFN or just Neuropathy. Thank you
@laureen8844
Is the twitching occurring just under the skin and is it on both sides or one side of the body? Apparently the twitching can be mistaken for ALS when it actually might be multifocal motor neuropathy. I guess a skin punch biopsy should tell you if you have sfpn. Since you said you have all the symptoms of neuropathy, can you say what are they specifically, I mean besides the twitching? Are you having much pain? Hank
Laureen, you’re very welcome! I have had SFN for 3 years. Ideopathic, probably caused by a virus, (not COVD19!🙃) Helen
-
Like -
Helpful -
Hug
1 ReactionThank You Hank . It started with pain in the heels of my feet which I occasionally get . Then sharp pain random in my lower and upper legs. The pain felt like an electric shock (which I don't get much anymore) . I now have a burning sensation on the outside of the area right below my knees in both legs. I was at Yoga today and I literally couldn't go down on my knees as the burning pain was just to much . Some numbness in my lower legs . I get what I think is muscle twitching (or pins and needles) right above both ankles. It is really hard for me to tell the difference. I started getting random twitches which I know are twitches in my right and left tricep...in my both my thighs . They are quite light and quick when I get them. I also get them in my back once in a while. The pain was never constant. At first it was more pronounced and shock like while now its more burning sensation.
-
Like -
Helpful -
Hug
3 ReactionsHelen you are a saint . You will put my mind to rest (at least for today 🙂 ). Thank you for taking the time to respond . I was surely let you know the results . I am not scheduled to take the test until May which I was a bit confused by as well but I will let you know. Have a great Sunday .
-
Like -
Helpful -
Hug
1 Reaction