Terrible Neurological Symptoms

[HectorConvector]

41 minutes ago, Wheatwacked said:

Glad you got the spreadsheet working. 100%DV is the minimum a healthy person needs to maintain health, as determined by numerous commitees. We with malabsorbtion or consumption deficiencies need more to replenish and heal. Even though different countries have slightly different official numbers, they are all close. In the US the FDA requires that the nutritional data on the label be + or - 20% accurate. So if you are eating 100% DV Calcium, you are actually getting between 80 to 120% of that nutrient. So those numbers are the starting point. More is better. If they sell Geritol Multivitamins it has the most complete mix of 100% DV of the essentials that I have found. Most other have 100% of the popular vitamins and minerals and throw in 2% of the rest so they can advertise 100% . Cruel Jokes.

 

I would say that before the nerve pain really kicked in again after stopping the duloxetine, I was eating a pretty rich diet with about 2500 calories a day and working those foods into the spreadsheet I was getting good amounts of the nutrients, and generally above the RDA substantially for the B vitamins. This was reflected in my blood work being "excellent" (as the doctor prescribed it) in my July 2021 blood test. That one revealed no deficiencies. I was on duloxetine at that time. I also have excellent energy levels in general, but of course that would drop if I can't keep the food intake up now I've been off duloxetine for a month. 

The only symptoms I get are just the nerve pain, and accompanied sticky skin which happens around the same time. Both these disappeared on duloxetine and to a lesser degree on amitriptyline which was also very effective but gave me side effects which is why I stopped that one.

I think it's interesting that the anti-depressants were very effective for me but the anti-convulsants not at all. That should offer some sort of clue about what's going on perhaps. I'm meeting my neurologist on 24th December so I'll tell him about all this of course.

[HectorConvector]

3 hours ago, Jackie Garrett said:

Hector

When I was getting really bad nerve pain and I mean so bad I just wanted to cry, I couldn’t bend my fingers i had pulling pain in my arms, pain so bad in my neck, shoulder and would radiate in to my chest, I thought what have I been doing lately that was different in my diet, because I wasn’t drinking Tea or Coffee anymore I started to drink hot milk everyday, and that’s when I made the connection so I thought I would come off Dairy and see if that sorts it out and yes it did but not only that it sorted all my symptoms out that I was not connecting to Dairy, symptoms I have had all my life, so you see you may have not made the connection yet, like I didn’t, it might not be in your case, it might be, but you could try and see if it helps your pain, it helped mine completely it completely went, amazing !!! There are lots of alternatives you can try, they may taste a bit strange at first but you get used to them, it could be your body needs a detox of Dairy and you could go back to small manageable mounts when your body has healed. My pain is gone I can’t stress enough how well my body is without Dairy in, I love Dairy I miss it, if anyone told me years ago that Dairy was causing my issues I would of said don’t be so ridiculous, but it WAS  my issue !!! I’m well I’m happy and so relieved I made the connection. I really hope you sort it one way or the other. Take care Jackie

 

I think that as my condition get so much worse with more things consumed, an elimination diet is going to be inevitable in the near future. 

I am however thinking back to a diet I did in 2019, in which I consumed only very easy to digest meals consisting of chicken, rice, a little bit of fruit, a few nuts, some gluten-free pasta and gluten-free bread. My peripheral nerve pain completely disappeared in three  months of eating those things every day - only time it's ever done so. I was eating gluten-free Lasagnes almost every day during that time, so there was cheese and milk present. But it's interesting that on that diet the pain just vanished.

[Wheatwacked]

29 minutes ago, HectorConvector said:

That's why I'm going back on duloxetine, because I know it works for me and gives me relief.

Good enough.  I did not realized that you had already had good results with it. That's the same reason I take prednisone: it works, and despite the dire warnings of my doctor I do better with than without.

[Jackie Garrett]

2 hours ago, HectorConvector said:

I think that as my condition get so much worse with more things consumed, an elimination diet is going to be inevitable in the near future. 

I am however thinking back to a diet I did in 2019, in which I consumed only very easy to digest meals consisting of chicken, rice, a little bit of fruit, a few nuts, some gluten-free pasta and gluten-free bread. My peripheral nerve pain completely disappeared in three  months of eating those things every day - only time it's ever done so. I was eating gluten-free Lasagnes almost every day during that time, so there was cheese and milk present. But it's interesting that on that diet the pain just vanished.

It’s just a thought, I always think back that’s how I made my connection. All the best.

[HectorConvector]

Well an absolutely terrible day again today, unable to concentrate on anything, and made much worse the more things I try to eat. I have no choice other than to do an elimination diet - as all the symptoms quickly disappear when I haven't eaten for a while. That's why when I first get up I have no nerve pain but then it becomes rapidly severe into the evening. I really need to get identifying what things are making this get so out of control and fast. Otherwise the quality of life is crap.

[HectorConvector]

Been taking 8000iu of vitamin D for the last 5 days, and a B complex, and attempting to meet the RDA for all the nutrients on the spreadsheet (over the course of the past week). 

Unfortunately after increasing the range of foods in my diet all the severe nerve pain is coming back stronger, and getting shooting pains now badly in both hands as well as feet. 

Yesterday I had the COVID-19 booster vaccine and that has heightened my immune system of course, so the symptoms are even worse today, very severe indeed, so I think the original nerve pain is definitely something to do with immune system activity and that I could be intolerant to a lot of different foods. After a few days it will be an elimination diet for sure. This has reached the worst point in my life at this point.

[ravenwoodglass]

33 minutes ago, HectorConvector said:

Been taking 8000iu of vitamin D for the last 5 days, and a B complex, and attempting to meet the RDA for all the nutrients on the spreadsheet (over the course of the past week). 

Unfortunately after increasing the range of foods in my diet all the severe nerve pain is coming back stronger, and getting shooting pains now badly in both hands as well as feet. 

Yesterday I had the COVID-19 booster vaccine and that has heightened my immune system of course, so the symptoms are even worse today, very severe indeed, so I think the original nerve pain is definitely something to do with immune system activity and that I could be intolerant to a lot of different foods. After a few days it will be an elimination diet for sure. This has reached the worst point in my life at this point.

Sorry you are suffering to this expent. If you can try and find an allergist to guide you through the elimination diet. Do ask when making the appointment as not all will do so. The doctor will test you for true allergies and give you a starting point for the elimination. You will likely start out with just 5 foods and expect them to be items you don't normally eat. It is a long process as you will need to add back foods one at a time, in pure form, for at least a week. good luck and I hope you get some relief soon.

[HectorConvector]

21 minutes ago, ravenwoodglass said:

Sorry you are suffering to this expent. If you can try and find an allergist to guide you through the elimination diet. Do ask when making the appointment as not all will do so. The doctor will test you for true allergies and give you a starting point for the elimination. You will likely start out with just 5 foods and expect them to be items you don't normally eat. It is a long process as you will need to add back foods one at a time, in pure form, for at least a week. good luck and I hope you get some relief soon.

Thanks. I may not be able to find someone until the New Year, as I'm seeing my neurologist in late December, he'll hopefully be able to refer me to the right person. 

[Wheatwacked]

Is that with the Duluxetine? Is it more calories or more volume that seems to trigger? Use supplements to compensate for what you don't eat enough. If calories is it carbs, protein or fats? If volume eat less more times. On a irrelevant note my younger brother (65) mentioned he has started having shooting pains in his feet, two weeks after a gout attack. 

2 hours ago, HectorConvector said:

after increasing the range of food

How is your Sodium:Potassium ratio in what you eat? I am going to mention B5 again.  Overall, It is important to exceed the minimum RDAs to allow you to build up a storage. Like a savings account.

Quote

deficiency is rare except in people with severe malnutrition [1,4]. When someone has a pantothenic acid deficiency, it is usually accompanied by deficiencies in other nutrients, making it difficult to identify the effects that are specific to pantothenic acid deficiency ...a deficiency is associated with numbness and burning of the hands and feet, headache, fatigue, irritability, restlessness, disturbed sleep, and gastrointestinal disturbances with anorexia.   https://ods.od.nih.gov/factsheets/PantothenicAcid-HealthProfessional/

 

[HectorConvector]

1 hour ago, Wheatwacked said:

Is that with the Duluxetine? Is it more calories or more volume that seems to trigger? Use supplements to compensate for what you don't eat enough. If calories is it carbs, protein or fats? If volume eat less more times. On a irrelevant note my younger brother (65) mentioned he has started having shooting pains in his feet, two weeks after a gout attack. 

How is your Sodium:Potassium ratio in what you eat? I am going to mention B5 again.  Overall, It is important to exceed the minimum RDAs to allow you to build up a storage. Like a savings account.

 

The doctor started me on a low dose of Duloxetine for some reason so it's not up to a clinically effective dose yet. I'm going up to 60mg tomorrow which should make more difference like last time.

More calories/volume appears to be the main trigger yes. 

I am getting 20-25% more potassium than sodium as I don't eat salty food or add any extra salt into my diet. Vitamin B5 is 110% of the RDA from diet alone but the Vitamin B complex takes it up to 822% of the RDA. My last blood test revealed no Vitamin B deficiencies. 

[HectorConvector]

1 hour ago, Wheatwacked said:

Is that with the Duluxetine? Is it more calories or more volume that seems to trigger? Use supplements to compensate for what you don't eat enough. If calories is it carbs, protein or fats?

 

Forgot to respond to this bit. I don't see any clear correlation with the nerve pain and type of calories, but carbs/quicker digesting foods will cause a quicker response and fats/proteins a more drawn out one. At the moment I get about 120g protein, 150 grams fat and 110 grams carbs per day.

[Wheatwacked]

1 hour ago, HectorConvector said:

carbs/quicker digesting foods will cause a quicker response and fats/proteins a more drawn out one.

Could the more drawn out from the fats and proteins be from carbs mixed in? Small red beans and plain rolled oats are good for fiber and potassium. 100% DV for potassium listed on nutrition labels in the US is 4700 mg an FDA ruling passed in 2016 full effect Jan 2021; dispite that the RDA on the NIH healthsheet still states 3400 mg. Budget cuts so no update? I think because our American diet is so driven by high sodium processed foods it takes 4700 mg to get a 1:2 Na:K ratio. I average 1:3. High potassium foods also are packed with other nutrients so when I get 4700 potassium most of the others are above 100%.

Hopefully the full dose of Dulaxetine will control your pain while you replenish vitamins and gain weight. Maybe try low glycemic index high fiber foods. Low glycemic carbs may slow the response and the fiber will feed the benificial bacteria. Almost seems like when you eat your gut puts out a toxin that affects your peripheral nerves. Check out Dr Fuhrman's Six Week Plan; I found it helpful, though at first I had trouble eating so much. Good luck with the neurologist, keep us updated.

2 hours ago, HectorConvector said:

The doctor started me on a low dose of Duloxetine for some reason

That's the recommended start dose for Neurapathy with renal dysfunction according to the Physician's Desk Reference. https://www.pdr.net/drug-summary/Cymbalta-duloxetine-288
Looks like he was just being cautious. 

Quote

Our Paleolithic hunter-gatherer ancestors took in about 11,000 milligrams (mg) of potassium a day from fruits, vegetables, leaves, flowers, roots, and other plant sources, and well under 700 mg of sodium. That's a sodium-to-potassium ratio of 1 to 16. Today, we get more sodium (3,400 mg) than potassium (2,500 mg), for a ratio of 1.36 to 1.        https://www.health.harvard.edu/heart-health/sodiumpotassium-ratio-important-for-health

 

[HectorConvector]

3 hours ago, Wheatwacked said:

Could the more drawn out from the fats and proteins be from carbs mixed in? Small red beans and plain rolled oats are good for fiber and potassium. 100% DV for potassium listed on nutrition labels in the US is 4700 mg an FDA ruling passed in 2016 full effect Jan 2021; dispite that the RDA on the NIH healthsheet still states 3400 mg. Budget cuts so no update? I think because our American diet is so driven by high sodium processed foods it takes 4700 mg to get a 1:2 Na:K ratio. I average 1:3. High potassium foods also are packed with other nutrients so when I get 4700 potassium most of the others are above 100%.

Hopefully the full dose of Dulaxetine will control your pain while you replenish vitamins and gain weight. Maybe try low glycemic index high fiber foods. Low glycemic carbs may slow the response and the fiber will feed the benificial bacteria. Almost seems like when you eat your gut puts out a toxin that affects your peripheral nerves. Check out Dr Fuhrman's Six Week Plan; I found it helpful, though at first I had trouble eating so much. Good luck with the neurologist, keep us updated.

That's the recommended start dose for Neurapathy with renal dysfunction according to the Physician's Desk Reference. https://www.pdr.net/drug-summary/Cymbalta-duloxetine-288
Looks like he was just being cautious. 

 

I wondered if it was from carbs in the food as well. Not sure. I'll keep trying to improve the potassium levels in my diet. Something weird definitely is happening when I eat, not only that but the nerve pain is triggered by mental stress quite badly I've noticed (which includes when I concentrate) and to some extent by physical exertion. I'll inform about what happens with the neurologist; hopefully I get a referral to someone in immunology and/or allergies.

[Wheatwacked]

More stuff to look at:

Are you getting enough choline and how is your plasma homocysteine.  You need about 3 eggs or 15 ounces of lean steak a day, or 8 cups of broccolli for the RDA of choline. Choline processes fat through the liver and recycles (together with folate)  homocysteine. High homocysteine is an indicator of clogged arteries (atherosclerosis) and a symptom is peripheral nerve pain.  https://www.healthline.com/health/homocysteine-levels#symptoms  It is important for acetylcholine "Acetylcholine is the chief neurotransmitter of the parasympathetic nervous system, the part of the autonomic nervous system (a branch of the peripheral nervous system) that contracts smooth muscles, dilates blood vessels, increases bodily secretions, and slows heart rate."   https://www.britannica.com/science/acetylcholine

One of the actions of Duloxetine is a selective reuptake inhibitor of norepinephrine. Maybe just a coincidence.

"As expected from the foregoing account, these two neurotransmitters [acetylcholine and norepinephrine] usually have opposing effects on their target tissue—contraction versus relaxation of smooth muscle, for example."   https://www.ncbi.nlm.nih.gov/books/NBK10854/ 

[HectorConvector]

40 minutes ago, Wheatwacked said:

More stuff to look at:

Are you getting enough choline and how is your plasma homocysteine.  You need about 3 eggs or 15 ounces of lean steak a day, or 8 cups of broccolli for the RDA of choline. Choline processes fat through the liver and recycles (together with folate)  homocysteine. High homocysteine is an indicator of clogged arteries (atherosclerosis) and a symptom is peripheral nerve pain.  https://www.healthline.com/health/homocysteine-levels#symptoms  It is important for acetylcholine "Acetylcholine is the chief neurotransmitter of the parasympathetic nervous system, the part of the autonomic nervous system (a branch of the peripheral nervous system) that contracts smooth muscles, dilates blood vessels, increases bodily secretions, and slows heart rate."   https://www.britannica.com/science/acetylcholine

One of the actions of Duloxetine is a selective reuptake inhibitor of norepinephrine. Maybe just a coincidence.

"As expected from the foregoing account, these two neurotransmitters [acetylcholine and norepinephrine] usually have opposing effects on their target tissue—contraction versus relaxation of smooth muscle, for example."   https://www.ncbi.nlm.nih.gov/books/NBK10854/ 

On my current diet I could increase choline. Eggs are out though as they massively increase my nerve pain from past experience so I'll increase it in another way. I'd have to request a test for homocysteine from the doctor. My cardiovascular health is known to be good but don't know what my arteries are like. My latest blood pressure readings are 100/61 and resting pulse 59bpm (from this week) if that gives any indication.

[HectorConvector]

Update: I just had this letter come through today from the hospital (or yesterday), dated 3rd December 2021. It regards my gastroscopy in August 2021.

"Following your clinic appointment I am pleased to let you know that the biopsies that were taken to assess your bowel (actually it was the small intestine) are completely normal. This suggests that you're doing very well on your gluten free diet and your villi have healed. Your vitamin B12, folate, iron and vitamin D stores are normal. Your thyroid function is normal. The urine tests that you have done are negative."

This is interesting, I am getting a lot of things saying everything is normal, also had a letter saying my heart scan was normal too. So the problem must be somewhere else. 

 

 

[gnelf]

If your B12 is on the low side of the normal range it could still be low.  This was the case for me.

Also, please be careful with elimination diets.  They are dangerous!  I was put on an elimination diet years ago, I felt like I went into another dimension.  I saw waves over my eyes for months.  And my narcolepsy got so much worse at that time.  I was eating more than 5 foods, but it wasn't enough.  It also risks annorexia.....because when you cut out so many foods, you start reacting to everything, and you start being scared to eat and having allergies to many foods.......(luckily i noticed the fear and refused to give in to it).  They can go away after reintroducing them, but it can take a very long time.  I really don't reccommend one of those extreme elimination diets.  I got to the point were I'd take a bite of a biscuit and need to immediately lay down because I would fall asleep.

You don't just react to foods either, things like toopaste become unbearable...I mean...you can brush your teeth, but say your partner brushes their teeth and sits next to you, the smell will be intense!

The elimination diet was only meant to be for a month, but I don't think I even made it through the whole month, it got real very quickly.  They thought just taking a multivitamin on top would be okay but it was not okay.

Please be careful, there's a lot of people trying to sell you something out there.  I was reccommended to a dietition from my gastroenterologist and she put me on the diet, it was really bad.  And the research on this stuff is still fairly new.

[Wheatwacked]

 

Operation a success. Unfortunately the patient died.

That is actually good news as far as GFD. Is the Duluxitine helping? Any success with the eliminations?

Keep working the essentials you are low on. Iodine is not in the SR28 database. RDA is 125 to 1100 mcg. Last week I increased my daily intake to 3 sheets of nori a day and there has been improvement in muscle tone and foot neurapathy. 80% of the upper limits assures enough and will replenish the stores used up.

Until your D plasma levels are above 200 nmole/liter (75 mg/ml) don't cross vitamin D off your list. It took 250 mcg a day before I felt it's effect.

 

Quote

in vivo confirmation that there exists a spectrum of different vitamin D responsiveness, with approximately 25% of a population not responding adequately to conventional vitamin D3 doses. They may require individually varying, but larger doses.    https://www.frontiersin.org/articles/10.3389/fimmu.2021.655739/full

 

Quote

the majority of authors would agree with the definition of vitamin D status as deficient for 25(OH)D3 concentration lower than 50 nmol/l (20 ng/ml), insufficient for 50-75 nmol/l (20-30 ng/ml) and adequate for 75-250 nmol/l (30-100 ng/ml)   https://openrheumatologyjournal.com/VOLUME/12/PAGE/261/FULLTEXT/

 

[HectorConvector]

The Duloxetine is helping a bit, not as much as last time in the summer. That time though I was eating less (but got too thin) and so the symptoms weren't as intense.

[Wheatwacked]

So you know something is wrong and Duloxetine partially helps to attenuate. Progress.😃

[HectorConvector]

I know several things about it:

It started in 2009 after a virus (but was mild for many years)

Went gluten free after diagnosed a celiac in 2010. Been gluten-free since

Deficiencies in the diet ruled out.

Multiple sclerosis ruled out (had MRI scan)

Nerve pain got significantly worse after 2019 when I did several weight gain attempts with weight training.

Diabetes/small fibre neuropathy ruled out.

Celiac related inflammation of the gut ruled out from biopsies.

Food of any kind but higher quantities is a trigger

Psychological stress is a major trigger. If I sleep for several hours in the afternoon the symptoms substantially lessen.

SSRI drugs such as amitriptyline and duloxetine have a beneficial effect on pain, whereas anti-convulsants (carbamazepine, gabapentin, pregabalin) do not.

Pain is short violent paroxysms in feet, hands, and lower legs happening multiple times an hour.

Getting a referral to a specialist in Ataxia next of all and also discussing the above stuff with the neurologist on 24th December. 

[Jackie Garrett]

14 hours ago, HectorConvector said:

I know several things about it:

It started in 2009 after a virus (but was mild for many years)

Went gluten free after diagnosed a celiac in 2010. Been gluten-free since

Deficiencies in the diet ruled out.

Multiple sclerosis ruled out (had MRI scan)

Nerve pain got significantly worse after 2019 when I did several weight gain attempts with weight training.

Diabetes/small fibre neuropathy ruled out.

Celiac related inflammation of the gut ruled out from biopsies.

Food of any kind but higher quantities is a trigger

Psychological stress is a major trigger. If I sleep for several hours in the afternoon the symptoms substantially lessen.

SSRI drugs such as amitriptyline and duloxetine have a beneficial effect on pain, whereas anti-convulsants (carbamazepine, gabapentin, pregabalin) do not.

Pain is short violent paroxysms in feet, hands, and lower legs happening multiple times an hour.

Getting a referral to a specialist in Ataxia next of all and also discussing the above stuff with the neurologist on 24th December. 

Hello Hector

Have you been tested for Lactic acid build up in your blood stream and your body, it can cause all sorts  of problems, and nerve pain being one of them, I believe this is what happened to me,  no blood test showed this up, so I removed things from my diet that made me acidic ie, Dairy, Tea Coffee, Alcohol and in time I got better, I drink Caffeine free herbal teas and lots of water,  I generally follow a lower histamine diet, but that’s just what I do I would recommend speaking to a dietitian if your changing a diet though. It’s not always what we eat it’s also what we drink too very often,  just a thought Hector, maybe look up Lactic acid build up and nerve pain. I hope you get sorted.

[HectorConvector]

1 hour ago, Jackie Garrett said:

Hello Hector

Have you been tested for Lactic acid build up in your blood stream and your body, it can cause all sorts  of problems, and nerve pain being one of them, I believe this is what happened to me,  no blood test showed this up, so I removed things from my diet that made me acidic ie, Dairy, Tea Coffee, Alcohol and in time I got better, I drink Caffeine free herbal teas and lots of water,  I generally follow a lower histamine diet, but that’s just what I do I would recommend speaking to a dietitian if your changing a diet though. It’s not always what we eat it’s also what we drink too very often,  just a thought Hector, maybe look up Lactic acid build up and nerve pain. I hope you get sorted.

Interesting possibility - I'll look it it! I do have some dairy (a piece of cheese each day) and otherwise drink water (gave up alcohol, though really was always a tee-total more or less). I can try taking dairy out and seeing if there's a difference for a week or two.

[Jackie Garrett]

10 minutes ago, HectorConvector said:

Interesting possibility - I'll look it it! I do have some dairy (a piece of cheese each day) and otherwise drink water (gave up alcohol, though really was always a tee-total more or less). I can try taking dairy out and seeing if there's a difference for a week or two.

Hector cheese has lactic acid in and if your body has a build up you are adding to it so you will get symptoms every time you eat or drink something with it in, that is what happened to me, it will take time for your body to heal but you may notice some improvements quite quickly, I thought I was ok still having Greek yogurt but eveytime I had it, I would get very bad pain because of the acid in it adding to my already acidic body, too much acid in the body is NOT GOOD for us, take it out and be well !!!!! Like I said in my previous quotes I feel so well now I found the answer out myself. Lactic/ citric acids are also added to many, many foods/ drinks, medication too, BEWARE !! 

[Jackie Garrett]

13 minutes ago, Jackie Garrett said:

Hector cheese has lactic acid in and if your body has a build up you are adding to it so you will get symptoms every time you eat or drink something with it in, that is what happened to me, it will take time for your body to heal but you may notice some improvements quite quickly, I thought I was ok still having Greek yogurt but eveytime I had it, I would get very bad pain because of the acid in it adding to my already acidic body, too much acid in the body is NOT GOOD for us, take it out and be well !!!!! Like I said in my previous quotes I feel so well now I found the answer out myself. Lactic/ citric acids are also added to many, many foods/ drinks, medication too, BEWARE !! 

Tea,  was not good with me it has Tannin in (Tannic acid)