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329994 tn?1301666848

Aching in legs/feet with extreme tingling. Also tingling in mouth

I have been diagnosed with peripheral neuropathy and am on Gabapentin, 300mg, 3x a day. Recently my ankles and feet are worse, aching so bad they came me awake and the tingling is extreme. I have also started with tingling in my mouth, and a scorching feeling in my mouth. I see my neuro doc in a few weeks but would like to see if anyone else has this issue and what have they been told. I am tired of doctors telling me I have this or they are not completely sure but hey, let's up your medicine. So, before I go back, I want to see if anyone else is suffering like I am. I would give the aching/tingling an 8 or 9 on a scale of 1-10. Any help is greatly appreciated. Thank you!
8 Responses
1530171 tn?1448133193
Hey lvfrogs,
You may be suffering from the side effects of Gabapentin.
Peripheral Neuropathy is actually not a diagnosis. It means damage to the
nerves of the Peripheral Nervous System. It is a symptom of other diseases, trauma to the myelin sheath and or to the nerves due to other dysfunction,or a symptom of systemic -possibly infectious- disease.
Neuros like in many other specialties love to use catch-all terms like Peripheral Neuropathy, as it leads easily to a specific prescription for reducing pain response. The underlying causes and conditions are rarely investigated thoroughly, as it is very time consuming, complex and often NOT IN THEIR BEST INTEREST (re: IDSA policy and protocols regarding certain infectious conditions).
Please list details and history up to the onset and diagnosis of P.N.
if you're up to it.
Meanwhile here'a link that may offer you some insight (I've looked at the ref.studies)  http://forum.lowcarber.org/archive/index.php/t-341510.html
Take care
If I were in your situation I would not accept any higher Gapapentin doses.
After you post again, I will send you some natural holistic suggestions.
Please include any tests, results etc

1756321 tn?1547098925
I read your profile where you mention a few other symptoms such as constipation, early satiety and bloating, all of which can be due to autonomic neuropathy. Autonomic neuropathies are a type of peripheral neuropathy. Signs and symptoms depend on which nerves are affected.
It has been suggested that autonomic nervous system dysfunction may explain all of the fibromyalgia symptoms.

Causes of primary acquired autonomic neuropathies include:

Idiopathic distal small fiber neuropathy
Holmes Adie syndrome
Ross syndrome
Chronic idiopathic anhidrosis
Amyloid neuropathy
Postural orthostatic tachycardia syndrome (POTS)

Causes of secondary acquired autonomic neuropathies include:

Metabolic derangements that may have an associated autonomic neuropathy:

Diabetes mellitus
Uremic neuropathy
Hepatic disease related neuropathy (such as primary biliary cirrhosis)

Vitamin deficiencies, toxins, and drugs that may have an associated autonomic neuropathy:

Vitamin B12 deficiency
Toxic and drug-induced autonomic neuropathy (eg: chemotherapy medications; acrylamide; pyridoxine (vitamin B6); thallium; amiodarone; perhexiline; gemcitabine)

Infectious diseases that may have an associated autonomic neuropathy:

Lyme disease
HIV infection
Chagas disease

Autoimmune conditions that may have an associated autonomic neuropathy:

Celiac disease  (may occur in approximately 50%)
Sjögren syndrome
Rheumatoid arthritis
Systemic Lupus Erythematosus
Connective tissue disorders
Autoimmune thyroiditis, such as chronic thyroiditis and Hashimoto thyroiditis, can be associated with some features of Sjögren syndrome such as xerostomia (dry mouth)
Guillain-Barré syndrome
Lambert-Eaton myasthenic syndrome (LEMS)
Paraneoplastic autonomic neuropathy
Inflammatory bowel disease
551343 tn?1506834118
I have tingling constantly in my legs, it never stops, sometimes gets worse so bad it drives me nuts. I have sometimes tingling in my mouth too it just comes and then goes.

I do not take ANY drugs for it so it cant be my drugs lol.

Sometimes the pain in my feet is so bad I could scream. I also get pain in my ankles and they have been known to give way from under me.

I have no diagnosis, although my GP believes I have MS, the jury is still out, even with positive VEPS for optical neuritis in BOTH eyes, lesions on my spine x2, and o bands in my lumbur puncture. The only reason why i was not diagnosed with MS, was because when I had my lumbur puncture done the blood test they took at the same time showed inflammation, so this is a negative for MS. But hey ho you can still have MS without the positive LP even though for me I had loads of O BANDS in my serum.

So the answer to your question is yes, I have tingling in legs, sometimes in mouth, and pains in my ankles and feet.
329994 tn?1301666848
Thank you for your response. I will try and detail as best I can. It all started about 5 years ago, when I became severely ill - never found out what was wrong but it was flu-like. Then within months, I became severely anemic and they did an endoscopy/colonoscopy checking for blood loss and there was no indication (I did have a hiatel hernia and polyps though).  After that I became extremely exhausted, beyond normal exhaustion. I kept telling my doctors and they blew it off as perimenopausal, depression etc. I also had extreme bloating. Long story short, I ended up with intestinal blockage (had a foot of my intestine taken out), my appendix, the next year my female organs (complete Abdominal Hysterectomy), and this past year a Subtotal Colectomy (most of my large intestine removed). I also developed shortness of breath. At one point, when telling my pulmonologist about how exhausted I was, he tested me for the Epstein Barr Virus. It came back positive. and then somewhere in all of this, my ankles and feet started the aching and I went to my cardiologist first (I have Prinzmetal's Angina). He ruled out his theories and sent me to a neurologist. I have had 2 brain MRI's and they show lesions that no one is sure what they are. The neurologist tested me for the peripheral neuropathy and it came back positive. He did send me to a rheumatologist (the worst doctor I have ever had), my ANA was positive but no other tests were. So the upside is that they think my EBV is the cause of my peripheral neuropathy. This is a very shortened version but I hope it helps. Feel free to ask any questions.
I am open to any natural solutions. Oh, and I was also on Klonopin for my restless legs syndrome, but chose to go off. Thanks for all your help. Very nice of you! oh, and I looked up the side effects of Gabapentin and don't think I have any of them. But will definitely talk to doctor about it!
and to RedStar - thank you so much for your valuable post also. It's so nice to receive answers to my posts that are so extremely helpful. I see my neuro doc next week and I have lots of questions for him. I will have to look up those diseases you mentioned. Some i know of, some I do not. I do not have diabetes though. That has been ruled out.
and to MrsAristotle - thank you too for answering my post. Have you seen a different doctor? I don't know all those tests that you have had or the results so can't answer about that but seems to me that you have not been given a reason and you need one. It drives me nuts and I am so tired of it. Let me know what happens.
Thank you so much everyone!!
1530171 tn?1448133193
Hey lvfrogs,
Wow! You are sure going through a lot in your life.
And you still have so much "spark" in you.
That is great, as this spark - part of your strong spirit- is so vital in dealing with all this stuff.
Here's a reply I sent someone on Dec.27th in the Fibro Community:
"The Mono - Epstein Barr virus- that you got over- is a latent virus.
It stays in your body for life and can be re-activated anytime when your immune system is under serious stress. Symptoms like migraines, headaches, fever, joint stiffness and muscle aches are consistent with
a re-activation.  It is possible  what symptoms you are experiencing presently, are  from this virus flaring up again.
These symptoms could also be caused by some low grade bacterial infection like mycoplasma.  It might be in your best interest to get some specific blood tests done to screen for other potential pathogens. For this you must deal with an LLMD and the testing through IGENEX Labs.
Anything done outside LLMDs and IGENEX Labs is taking a huge chance
with your health, as you might get undiagnosed or misdiagnosed.
There are far too many incompetent or worse MDs who follow IDSA guidelines and general Labs with too many q.c. issues.
Hope this helps."

I will post again when I have more time -after re-reading your post as well!
(How did you resolve the hiatal hernia and polyps?)

There are always many things that can be done for improvement.
Hang in there and stay strong!
1530171 tn?1448133193
Hi lvfrogs.
A synergistic program to help you reduce your suffering and potentially heal your PN  entails :
1. Diet and nutrition including supplements
2. Activity, exercise and fitness
3. Emotional balance and stress management
4. Support (Health coach and Health practitioners -preferably holistic from non-conventional medicine unless absolutely necessary- family and friends, work place -boss and coworkers.
5. The extras. i.e. Breathing techniques, Meditation, Mind-Body-Spirit, etc

There's strength in numbers and the more elements from each group are incorporated, the greater the potential for success.

1. Avoid ALL cooking oils to minimize inflammation. Use only Extra Virgin Coconut Oil for cooking. Extra Virgin Olive Oil for drizzling over greens and salads. DHA is HUGE for CNS health. It is very thin and vital for myelin
sheath integrity. It competes with other fats like hydrogenated, saturated and oxidizing thicker oils. So an omega-3 rich diet with an emphasis on
mercury free fish is very good. Omega-6 foods are destructive!
Free range chicken and pastured red meat is O.K. in moderation as it is much higher in omega-3 than commercial meats that contain mainly omega-6, and chemical free.
Fresh fruit and fresh vegetables-organic if possible- and limited whole grains and legumes. Avoiding starches, white flour, sweets and specially artificial sugars is critical -they break down into formaldehyde a very dangerous toxin, associated with many neurological issues.
No junk food, no sodas, no multi-ingredient packaged foods, no msg including all the alternate names used in the food industry to disguise it,
no deep fried foods, no margarines or anything with hydrogenated oils.
-MgCl-Magnesium Chloride Transdermal, called Magnesium Oil when mixed with water (if you want details let me know)- necessary for nerve conduction.
B complex but absolutely a must are the following 2:
-B12 -Methylocobalamin sublingual -not Cyanocobalamin!
symptoms of peripheral neuropathy related to B-12
deficiency include  leg and foot pains. Absolutely essential  for  nerve health
-Folic acid B9- synergistic with B12

NAC,ALA, C and E and Glutamin and Selenium for Glutathione production support. (Glutathione levels are indicative of health and longevity, Glutathione is the body's Master Anti-Oxidant, recycles used Vitamin C and others instead of becoming waste and putting a continuous load on organs and systems  to get the waste processed and eliminated)
I use Undenatured Whey Isolate Protein Powder -No blender and no heat,
as it is very sensitive- in a smoothie- for Glutathione production.
One thing you will not hear from your Doctor is that high levels of Glutathione will keep the JNK gene under control. JNK once activated
it leads to chronic disease: Alzheimers, MS, BiPolar, Cancer, etc.
JNK3 is the subtype of this gene regarding the nervous system.
This is one of the highest level Protocols for Health and Prevention!
Nerve Tonics: Skullop and St John's Wort.

Two more -non nutrition- suggestions before I sign off tonight:
-Heavy Metals Detox!! It is a MUST if you haven't done one recently.
It has potentially huge health implications specially in Nervous system
-Have you heard of Sympathetic low current Electrotherapy?
It is FDA approved and you can research this at Dynatronsys.com

This is the first part. My posts tend to be long, so I do it in parts, as time allows me.
My suggestions are not to replace medical advice of course.
However, I make every effort to offer safe recommendations and most of them I have used myself -and  my family. Some I use for my clients.
Please do your own research and should you have any questions,
do not hesitate to ask me or just to comment. You can pm me anytime.
Take care.

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