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!
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
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
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:
Infectious diseases that may have an associated autonomic neuropathy:
Autoimmune conditions that may have an associated autonomic neuropathy:
Celiac disease (may occur in approximately 50%)
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)
Lambert-Eaton myasthenic syndrome (LEMS)
Paraneoplastic autonomic neuropathy
Inflammatory bowel disease
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.
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!!
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!
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.
Wow is all I can say. You have been through as much as me surgically lol.
I had huge cyst removed off ovary when I was 3 months pregnant, but I managed to keep the baby.
I had septic gallbladdar caused through doctor neglect because I had a huge gallstone stuck between the bladdar and liver (size of a plum), which nearly killed me and had to have the GB out, I was only 25 at the time.
At 27 my womb and surrounds were covered with endometriosis (an auto immune disease), and fibroids hanging out so had to have a totally hysterectomy and 2 pints of blood afterwards because I had an infection.
2 years later in 1981 I started with terrible sciatica pain in my right leg, and my left hand was numb in the morning and most of the day. The diagnosis at the time was stop smoking (I smoked 5 a day), and rest more because I had 2 young children.
I then went to Kenya.
In 1982 when I came home I had terrible fatigue, myalgia in my legs and sweating. I was told by a doctor they thought i had brucellosis even though my test came back negative, but 2 doctors agreed, but I never remember having any antibiotics for it. From that date I had constant UTI, and weird pains in my body and fatigue, and i think the doctors thought i had turned hypochondriac lol. Every water test came back with STERILE PYRURIA, and on one xray they found a large cluster of calcification behind my ribs. I was told the sterile pyruria was probably misuse of allergisics. I was FURIOUS, as I rarely ever rarely take pain meds. 1 paracetamol a year is a lot for me.
More UTI, then on holiday in brazil I went blind for a few minutes, saw doctor told no stroke. Went home it happened again and saw doctor and was told it was just the heat and probably a bit of low blood pressure and the doctor didnt even bother to get up off his chair and check my eyes or my BP I kid you not.
Then from that date 2000 things started on a regular basis,terrible eye pain and burning in the eyes pins and needles, come and go, balance off, came and went, intolerance to heat, vertigo. I was signed off sick in 2003 for 6 months with a constant UTI which would not resolve, terrible fatigue too ill and tired to eat, vertigo, and pins and needles in my hand and legs. Then i went back to work.
Slowly things came back over time again little episodes of things, stabbing pains in my arms, legs, fatigue, balance, dropping things constantly, and by 2006 I some days I couldnt drive because of the pins and needles at the time, the fatigue was horrendous, fell asleep by 3pm on my desk lol. Then on 11th September 2006 i got up out of bed and fell over couldnt feel my legs. It only last a few minutes but hubby wouldnt let me go to work, then things would not get better. Changed doctors she sent me to neuro.
I had MRI of head paid for by myself. Large cluster of high signal foci found in the deep white matter of my brain, but the radiologist stated he wasnt sure it was demylination but probably my age (1951). Oh yes I had positive blood test for lupus but the second one was negative (MY DAD HAD LUPUS). I have had weird bloods since showing things like smooth muscle and other things.
My left leg was numb, my foot dead well actually felt squishy lol, burning and stuff blah blah blah lol. It has never resolved or gone over 5 years and is worse and worse somedays i struggle to walk and becoming disabled more and more. I have had lesions on my MRI spine, and like I said positive VEPS which showed when i went blind twice i did have optical neuritis in both eyes (70 to 90 percent with MS have ON).
So that is where i am at.
Niko I follow roughly your regime. I bought the The MS recovery diet, and do not eat legumes, dairy, or gluten and this has helped my symptoms. IF I slip I know it lol.
I just work as though i have MS and it seems to be working, and helping me.
The doctors never did, just wanted to fill me up with physcho drugs that make you worse. I am drug free apart from one beta blocker for my blood pressure.
Thank you so much again for answering. I really appreciate it. Mrs. Aristotle, you have been through alot too, haven't you. I am curious that alot of this started after you were in Kenya. I don't know enough medical information to offer any advice, but that is definitely strange and even now to this day, maybe you should be tested for other things. I know when I asked my doctor about Lyme, she had me tested for 3 other things. I can't remember them all but Babesia (maybe), a Malaria test, Bartonella, etc...It does sound suspicious of MS too (to me) so I think doing what you are doing is probably the right thing to do but I would think they should re-do your lupus test and possibly your brain/spine MRI's. I am sorry for you as I know how frustrating it is to feel so bad and not really get answers.
Are you a health professional, because you are extremely knowledgeable!! I know exactly when my EBV becomes active again as I get a very severe sore throat but nothing else (beyond the usual) so you are so right on that. I know the EBV can lead to other diseases and even cancer. I have had a couple of those already (skin cancer and the peripheral neuropathy) so I am trying to be vigilant about any new symptoms. I just wish my doctors had more answers. I am going to print out what your 2nd post listed, with the nutrition information. I already do some of that but since I had my large intestine removed, I don't eat any meat at all and I need to see a nutritionist as I am not even sure if any of my meds are being processed right. My doctor was a surgeon and basically did a great job on the surgery, but no follow up. I am not sure I understand some of your other recommendations. I will need to look them up, like the Glutathione information. My husband makes me protein smoothies so that I get protein. Is this something I should add to them? and I have never had a heavy metal detox although I have heard of it before. I will spend some time on the internet when I feel a little better looking it all up.
I truly cannot thank you enough for helping me. For taking time out of your busy schedules and not feeling great yourselves and yet taking the time to write such information posts to me. Thank you. I think you are the answers to my prayers.
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