Terrible Neurological Symptoms

[HectorConvector]

48 minutes ago, Wheatwacked said:

Time to stop guessing. Can you weigh and write down everything you eat for a day. I have a spreadsheet I created for myself that calculates the nutrients in my food and compares it to the RDA so I know exactly how much of what I need to supplement or eat more of every day compared to what the NIH says a healthy person needs. It is surprisingly different than what I started with two years ago.  I use the trackable nutrients from the National Nutrition Database.  This is the link to my results.   http://nutrientlog.doodlesnotes.net/ .

At one point I stopped eating and lost weight. Turned out to be too much salt.  Your story makes me think of Karen Carpenter.  With your limited diet there are for sure going to be multiple dificiencies. Post it or PM it. I will run the numbers for you.

Next, do you have your lab results, can you post them? Anything could be a clue. What is your last vitamin D plasma and how much are you supplementing D? B5 was a problem for prison camp detainees suffering malnutrition in World War II.

I can create a similar spreadsheet pretty easily. Then I'll compare what I get to the recommended numbers .

No lab results. The doctors here don't give us detailed information about those, they will basically just say "your vitamin D is a bit low" and prescribe a medication. Otherwise was told B6/12 was "normal". Next time I speak to the doctor I'll ask them if I can have detailed blood test results. Anyway I'm supplementing with 200 i.u vit d3 per day.

[HectorConvector]

2 minutes ago, HectorConvector said:

I can create a similar spreadsheet pretty easily. Then I'll compare what I get to the recommended numbers .

No lab results. The doctors here don't give us detailed information about those, they will basically just say "your vitamin D is a bit low" and prescribe a medication. Otherwise was told B6/12 was "normal". Next time I speak to the doctor I'll ask them if I can have detailed blood test results. Anyway I'm supplementing with 200 i.u vit d3 per day.

I definitely don't have B5 deficiency. I eat a lot of things with that in it.

[trents]

200 IU of D3? Did you mean to type 2000 IU?

[HectorConvector]

6 minutes ago, trents said:

200 IU of D3? Did you mean to type 2000 IU?

It says 200 on the container. That seems very low according to google. Not sure what good that is then?

[HectorConvector]

1 hour ago, Wheatwacked said:

Time to stop guessing. Can you weigh and write down everything you eat for a day. I have a spreadsheet I created for myself that calculates the nutrients in my food and compares it to the RDA so I know exactly how much of what I need to supplement or eat more of every day compared to what the NIH says a healthy person needs. It is surprisingly different than what I started with two years ago.  I use the trackable nutrients from the National Nutrition Database.  This is the link to my results.   http://nutrientlog.doodlesnotes.net/ .

At one point I stopped eating and lost weight. Turned out to be too much salt.  Your story makes me think of Karen Carpenter.  With your limited diet there are for sure going to be multiple dificiencies. Post it or PM it. I will run the numbers for you.

Next, do you have your lab results, can you post them? Anything could be a clue. What is your last vitamin D plasma and how much are you supplementing D? B5 was a problem for prison camp detainees suffering malnutrition in World War II.

Are the RDA's on your spreadsheet appropriate for a 6'4" man?  2000 calories would be too low for me (and I notice you usually eat alot more than that), I'd probably need 2,500 to maintain 130-135lbs that I weigh. Also the protein RDA 60g seems very low. I am athletic and usually take in at least 120g protein a day for example. 

[trents]

27 minutes ago, HectorConvector said:

It says 200 on the container. That seems very low according to google. Not sure what good that is then?

200 IU will not make any impact. That is much too low. I would recommend a minimum of 2000 IU but there are those on this forum who would recommend much more that that daily. Recommendations for D3 supplementation by the medical/scientific are all over the place. Some years ago there was concern about over dosing on D3 since it is a fat soluble vitamin and you were seeing recommendations of a max daily of 2000-5000 IU but that seems to be in flux now.

[AlwaysLearning]

What about heavy metal poisoning? A diet that high in fish is what makes me ask. 

Also along the lines of toxins, do you live near any fossil fuel production sites? Peripheral neuropathies are associated with living near fracking sites and oil refineries. And I think within 3-5 miles is considered "near" though wind directions may vary. Mold is another neuropathy cause.

Though your symptoms are triggered by food, I don't think you can rule out the possibility of toxins. Digestion might just be one process too many for your body to deal with at once. 

I presume they already ruled out diabetes. Did they also check your liver and kidney function?

 

[HectorConvector]

33 minutes ago, AlwaysLearning said:

What about heavy metal poisoning? A diet that high in fish is what makes me ask. 

Also along the lines of toxins, do you live near any fossil fuel production sites? Peripheral neuropathies are associated with living near fracking sites and oil refineries. And I think within 3-5 miles is considered "near" though wind directions may vary. Mold is another neuropathy cause.

Though your symptoms are triggered by food, I don't think you can rule out the possibility of toxins. Digestion might just be one process too many for your body to deal with at once. 

I presume they already ruled out diabetes. Did they also check your liver and kidney function?

 

I have considered heavy metal poisoning. Maybe it's worth stopping the fish intake for a period of time then? I also have mercury fillings (and had one replaced a few years ago) so wonder if that could have had an effect? 

The place I live in now has no mold problems though some used to occur in a previous apartment which was 3.5 years ago. 

No diabetes, they ruled it out but I also used a blood sugar meter and my last 4 day test had a maximum of 126mg/dl out of 50 blood test strips used and the average below 100mg/dl.

So I've made a spreadsheet based on WheatCracked's one and am comparing what I've had today with the RDA numbers and adding tonight's stuff then doing it every day. Some things I can't find all the information for, though. On the vitamin D side of things seems like already my diet has more than 700 iu of Vit D in it. But I might not be absorbing it well.

[HectorConvector]

38 minutes ago, AlwaysLearning said:

 

I presume they already ruled out diabetes. Did they also check your liver and kidney function?

 

In my latest blood test I had slightly elevated liver "ALT" level after being on duloxetine for the nerve pain. But that was the first time that happened and was far later my my neuropathy got bad, otherwise liver and kidney function is normal.

So far today my nerve pain is quiet because I've eaten very little calories, that's the only thing that calms it down. Normally I eat a lot more. Then the nerve pain gets worse and worse until I have to stop eating much. When I'm eating proper amount I'm getting a lot of varied foods and nutrition in. But the nerve pain goes out of control.

[HectorConvector]

I've added up all the foods eaten today, unfortunately today is not very representative of my normal diet because my pain is very severe at the moment meaning I couldn't eat as much as normal. I still ate what I usually ate but not as much. 

The total carbs/fat/protein was 97g/84g/78g. Magnesium was low (but would have been nearer the RDA if I'd been able to eat more like 2000 calories than 1400). Potassium also quite low, calcium was very low today, but I didn't have cheese today whereas I often do. Manganese was low. B vitamins; B3 and B6 were just above RDA and B12 was well above. Thiamine (B1) was low, as was folate. Choline and Vitamin A were low. Vit E was a bit low but not very. I'll identify what things to add into my diet to increase the ones that are low, if I can eat more without making my symptoms worse.

 

[Wheatwacked]

8 hours ago, HectorConvector said:

Are the RDA's on your spreadsheet appropriate for a 6'4" man

I am 6'2", 170 pounds, so I used the RDA for adult male over 50. Mostly it doesn't matter too much. The numbers are averages.  Since a female is smaller the rda's usually are smaller and the RDA for children is for the most part adjusted for size.  I use the professional fact sheets for the rda and upper limits.  https://ods.od.nih.gov/factsheets/Potassium-HealthProfessional/

 https://www.ars.usda.gov/northeast-area/beltsville-md-bhnrc/beltsville-human-nutrition-research-center/methods-and-application-of-food-composition-laboratory/mafcl-site-pages/sr11-sr28/  for the database I use. 

 

=D3*$A$4/100  is the math to take their 100 g and and adjust for the quantity I eat and just copy paste for the whole row. Copy paste from the database to row 3, input at A4, then copy- paste special from row 5 to the totals area.

A3 is input for quantity and A4=A3.  I use Open Office but it should work in any spread sheet.  Hope it helps. When I started this I found I was eating around 1500 calories a day.  Look for the nutrients you consistantly do not eat enough, like folate, choline, potassium, calcium, etc. and start by focusing on them. 

If your D was low and only supplementing  200 a day. ?!?. I read somewhere it takes 2000 iu a day to raise plasma level over time by 10 ng/ml.  I take 10,000 iu a day and it took 6 years to get me up to 84 ng/ml. I try to get 5000 mg potassium a day to get my BP under control (K/Na ratio) and it seems to be working, and that pretty much drives my calories. I would check my totals in the evening then eat what I was missing, or take supps. Cod Liver oil for vitamin A. Almonds for vitamin E. Parsley for vitamin K. Iodine is not in the database. Sushi nori is good for that, not as much iodine as other seaweeds so less chance of too much.  Kelp is like 100 times as much. Avoid synthetic folic acid prostate cancer, vit E lung cancer and vit A gastrointestinal cancers. Our feedback systems don't recognize high fructose corn syrup and fructose is metabolized different from glucose. Ideally your intakes should be somewhere in the middle between the min RDA and the recommended upper limit. Fat and cholesteral and protein limits I think was a misdirection to keep us eating wheat. When I was a kid in the sixties they started saying we ate too much protein. Up to then we were said to be the healthiest generation and its been downhill mentally and physically since.

There may be other issues going on with you. Checked for parasites?, lyme?, already mentioned toxins, infection would show in your WBC and neutrophils. But this will at least eliminate the malnutrion aspect.

Sorry for the ramble. I can email the spreadsheet if you want, but looks like you got it.

 

[HectorConvector]

28 minutes ago, Wheatwacked said:

I am 6'2", 170 pounds, so I used the RDA for adult male over 50. Mostly it doesn't matter too much. The numbers are averages.  Since a female is smaller the rda's usually are smaller and the RDA for children is for the most part adjusted for size.  I use the professional fact sheets for the rda and upper limits.  https://ods.od.nih.gov/factsheets/Potassium-HealthProfessional/

 https://www.ars.usda.gov/northeast-area/beltsville-md-bhnrc/beltsville-human-nutrition-research-center/methods-and-application-of-food-composition-laboratory/mafcl-site-pages/sr11-sr28/  for the database I use. 

 

=D3*$A$4/100  is the math to take their 100 g and and adjust for the quantity I eat and just copy paste for the whole row. Copy paste from the database to row 3, input at A4, then copy- paste special from row 5 to the totals area.

A3 is input for quantity and A4=A3.  I use Open Office but it should work in any spread sheet.  Hope it helps. When I started this I found I was eating around 1500 calories a day.  Look for the nutrients you consistantly do not eat enough, like folate, choline, potassium, calcium, etc. and start by focusing on them. 

If your D was low and only supplementing  200 a day. ?!?. I read somewhere it takes 2000 iu a day to raise plasma level over time by 10 ng/ml.  I take 10,000 iu a day and it took 6 years to get me up to 84 ng/ml. I try to get 5000 mg potassium a day to get my BP under control (K/Na ratio) and it seems to be working, and that pretty much drives my calories. I would check my totals in the evening then eat what I was missing, or take supps. Cod Liver oil for vitamin A. Almonds for vitamin E. Parsley for vitamin K. Iodine is not in the database. Sushi nori is good for that, not as much iodine as other seaweeds so less chance of too much.  Kelp is like 100 times as much. Avoid synthetic folic acid prostate cancer, vit E lung cancer and vit A gastrointestinal cancers. Our feedback systems don't recognize high fructose corn syrup and fructose is metabolized different from glucose. Ideally your intakes should be somewhere in the middle between the min RDA and the recommended upper limit. Fat and cholesteral and protein limits I think was a misdirection to keep us eating wheat. When I was a kid in the sixties they started saying we ate too much protein. Up to then we were said to be the healthiest generation and its been downhill mentally and physically since.

There may be other issues going on with you. Checked for parasites?, lyme?, already mentioned toxins, infection would show in your WBC and neutrophils. But this will at least eliminate the malnutrion aspect.

Sorry for the ramble. I can email the spreadsheet if you want, but looks like you got it.

 

Yes, thanks, I've got the basic format of the spreadsheet down so I can figure out all the numbers I'm getting. Normally I eat more than 1400 calories (avg. 2500 until last week) but the pain was so bad lately I can't eat as much as usual this last few days. 

Fairly sure I don't have parasites but not been officially tested. The only other background I can give is that my first neurological peripheral pains started after I had a bad virus in 2009. It caused a high fever, violent headache + hallucinations, and cold sweats for 2-3 days, then stomach cramping and a slight dry cough. It went away for two weeks and suddenly returned more aggressively. I couldn't identify the exact virus involved but when I described the symptoms various people some suggested it could have been Epstein Barr virus as it was when I was at university. 

That was the first time I had shooting type pains in my hands and legs/feet. It was after this that the first weird cold and painful sensations started in my feet, along with pains. Ever since that virus. Maybe it's a co-incidence but I don't know.

[Wheatwacked]

All the good TV detectives say there is no such thing as coincidence😎.

 

[Maverita]

On 11/21/2021 at 7:01 AM, HectorConvector said:

I eat fruit, fish, white meat like chicken, lean red meat (less than 15% fat), vegetables such as onions, broccoli, eat mushrooms, humus, pitta bread. Drink only water. No alcohol. I eat low sugar as a general rule. 

Last blood test showed normal vitamin B6/B12 levels. These had been low about 10 years ago and suggested as a reason for my then (mild) neuropathy but now I've had normal levels a while and worse pain than ever so it seems to be something else.

Have you looked at other possible food sensitivities?  I looked up the ingredients of gluten-free Pita breads and all of them contained several ingredients that I cannot tolerate, including but not  limited to:  yeast, xanthum gum, unulin (if from chicory), non-GMO corn, buckwheat, etc....   Many nerve issues are relieved when inflammation is relieved, so I suggest testing for food sensitivities OR the poor-man's version: the Elimination Diet.  

[HectorConvector]

1 hour ago, Maverita said:

Have you looked at other possible food sensitivities?  I looked up the ingredients of gluten-free Pita breads and all of them contained several ingredients that I cannot tolerate, including but not  limited to:  yeast, xanthum gum, unulin (if from chicory), non-GMO corn, buckwheat, etc....   Many nerve issues are relieved when inflammation is relieved, so I suggest testing for food sensitivities OR the poor-man's version: the Elimination Diet.  

I haven't noticed a correlation of nerve pain with specific foods, just quantities consumed. I've only eaten the pitta breads for a short time (and one small one per day) but my nerve pain last got extremely violent in March 2020 when I was doing a high calorie diet and weight training, with no pitta breads or similar foods, but lots of fat and protein in it.  As soon as I dropped the overall calorie intake down on the same foods the pain lessened again. It really is pure quantity that triggers the symptoms. I can't eat alot of anything without severe pain. 

[HectorConvector]

13 hours ago, Wheatwacked said:

I am 6'2", 170 pounds, so I used the RDA for adult male over 50. Mostly it doesn't matter too much. The numbers are averages.  Since a female is smaller the rda's usually are smaller and the RDA for children is for the most part adjusted for size.  I use the professional fact sheets for the rda and upper limits.  https://ods.od.nih.gov/factsheets/Potassium-HealthProfessional/

 https://www.ars.usda.gov/northeast-area/beltsville-md-bhnrc/beltsville-human-nutrition-research-center/methods-and-application-of-food-composition-laboratory/mafcl-site-pages/sr11-sr28/  for the database I use. 

 

=D3*$A$4/100  is the math to take their 100 g and and adjust for the quantity I eat and just copy paste for the whole row. Copy paste from the database to row 3, input at A4, then copy- paste special from row 5 to the totals area.

A3 is input for quantity and A4=A3.  I use Open Office but it should work in any spread sheet.  Hope it helps. When I started this I found I was eating around 1500 calories a day.  Look for the nutrients you consistantly do not eat enough, like folate, choline, potassium, calcium, etc. and start by focusing on them. 

you want, but looks like you got it.

 

This is the only bit I'm stuck on. I've made a spreadsheet template but so far have been  entering the data manually from website data. But that will take me 2-3 hours a day to fill the values in. I have downloaded the data from your link but don't know how to open it in Excel. There seem to be a number of documents present. I have been trying to open the one called "NUT_DATA"? It doesn't open on Excel in a way that I can make sense of so far so think I'm doing something wrong.

[Wheatwacked]

I went in circles back then also. The trick is to download SR28ABXL.Zip (2.9 MB)-Excel file format. Save it.  Right click choose EXTRACT ALL. It opens it as ABBREV.xlsx. Then save it.   It seems like just clicking should automatically extract it but it doesn't. Wasted hours. Text files open just by clicking but it seems like spread sheet files you have to do the EXTRACT ALL. This is the abbreviated version.  The full version is only available as Access or RDBMS which is Amazon's version of access. My Skills in Access would have meant hours setting up queries and reports and at the time I did not have the patience nor the need for all the extra catagories. Maybe someday.

To save time I have another sheet in the same book I call Short List and when I find the food in ABBREV I right click copy the row and paste it to Short List. So my ''book" has 4 sheets: ABBREV, Short List, the one I created (I just called it Sheet4), and nutrition log. Then I used the Data functions to define the range in the total area including totals (that's what is on my website) $Sheet4.$A$6:$BA$32 to copy and save to Nutrition Long each day. Data functions again  $Sheet4.$A$8:$BA$27 define the area to clear each day.

Practice and a growing Short List will quicken the time spent, but I found the payback worth it. You've already seen how easy it is to identify daily deficienies. Then you can What if different foods to see how it changes your totals.

[HectorConvector]

25 minutes ago, Wheatwacked said:

I went in circles back then also. The trick is to download SR28ABXL.Zip (2.9 MB)-Excel file format. Save it.  Right click choose EXTRACT ALL. It opens it as ABBREV.xlsx. Then save it.   It seems like just clicking should automatically extract it but it doesn't. Wasted hours. Text files open just by clicking but it seems like spread sheet files you have to do the EXTRACT ALL. This is the abbreviated version.  The full version is only available as Access or RDBMS which is Amazon's version of access. My Skills in Access would have meant hours setting up queries and reports and at the time I did not have the patience nor the need for all the extra catagories. Maybe someday.

To save time I have another sheet in the same book I call Short List and when I find the food in ABBREV I right click copy the row and paste it to Short List. So my ''book" has 4 sheets: ABBREV, Short List, the one I created (I just called it Sheet4), and nutrition log. Then I used the Data functions to define the range in the total area including totals (that's what is on my website) $Sheet4.$A$6:$BA$32 to copy and save to Nutrition Long each day. Data functions again  $Sheet4.$A$8:$BA$27 define the area to clear each day.

Practice and a growing Short List will quicken the time spent, but I found the payback worth it. You've already seen how easy it is to identify daily deficienies. Then you can What if different foods to see how it changes your totals.

Thanks for this info, I've got something working quite a bit quicker now, so I'm calculating it all for today's food.

[Jackie Garrett]

Hello  Hector C

Are you sure that Dairy is not an issue with you too, I noticed you said you eat cheese,  when I came off all Dairy and high histamine foods/ drinks all my life long symptoms went away, things that made me worse were Tea, Coffee, Alcohol, preservatives anything with Lactose or starter cultures in, so watch out for any supplements/ meds with Lactose in, there are plenty of Dairy alternatives out there now. If you research what contains Lactose that will give you an insight, so many people can not tolerate milk. I hope you find the answer it’s life changing when you do believe me. Good luck

[HectorConvector]

1 hour ago, Jackie Garrett said:

Hello  Hector C

Are you sure that Dairy is not an issue with you too, I noticed you said you eat cheese,  when I came off all Dairy and high histamine foods/ drinks all my life long symptoms went away, things that made me worse were Tea, Coffee, Alcohol, preservatives anything with Lactose or starter cultures in, so watch out for any supplements/ meds with Lactose in, there are plenty of Dairy alternatives out there now. If you research what contains Lactose that will give you an insight, so many people can not tolerate milk. I hope you find the answer it’s life changing when you do believe me. Good luck

I don't eat a lot of dairy products in general, but I've noticed no correlation with dairy and the symptoms I get. 

Today I've tried to get in more than 2000 calories and get close to the RDA for all the nutrients. However I'm getting extremely violent nerve pain due to eating more. Very severe indeed. I don't know how much worse this is going to get or for how long. I'm started on Duloxetine again tomorrow but after that I may have to consider opiates.

[HectorConvector]

Also as happened before when I increased my range of foods over the summer (before I did limit them very recently due to severe nerve pain), I am also starting to get the classic shooting pains in my hands that I recognise when my immune system goes into overdrive, I also get that when I have a severe virus or infection.

So I'm definitely thinking along the lines here of some sort of violent immune system reaction to food generally. Seems like my body thinks it's fighting some sort of infection in response to normal eating (gluten-free of course). 

[yuluyouyue]

I am sorry to hear you are going through this ordeal. I hope you will find something that works soon. I remember reading on this forum a thread by a woman whose immune system also seems to have rebelled at most food and I think only one kind of meat or something like that didn't give her trouble. She experimented constantly to find what she could it. She also recorded here all the tests that her doctors did so perhaps you can find the thread to see what line of examination they were following. 

[Jackie Garrett]

7 hours ago, HectorConvector said:

I don't eat a lot of dairy products in general, but I've noticed no correlation with dairy and the symptoms I get. 

Today I've tried to get in more than 2000 calories and get close to the RDA for all the nutrients. However I'm getting extremely violent nerve pain due to eating more. Very severe indeed. I don't know how much worse this is going to get or for how long. I'm started on Duloxetine again tomorrow but after that I may have to consider opiates.

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

Just now, 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

 

[Wheatwacked]

7 hours ago, HectorConvector said:

I recognise when my immune system goes into overdrive...Duloxetine is an antidepressant medicine. It's used to treat depression and anxiety. It's also used to treat nerve pain, such as fibromyalgia

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.

Before starting the Duloxetine (see side effects below) I would like to suggest at least week of massive amounts of vitamin D3. You'll know if it works. 10,000 iu a day or more. It is safe. It only took 4 days to show its effect on me. One trial gave kidney transplant patients over a million IU in one dose with no ill effects and there were numerous other similar trials.  The research seems to be indicating that high enough levels of D in the blood plasma works to downregulate the genes causing the inflamatory response.

Some of the side effects of Duloxetine are exactly what you are trying to relieve.

Quote

Medically reviewed by Drugs.com. Last updated on Mar 5, 2021.  Commonly reported side effects of duloxetine include: asthenia, constipation, diarrhea, dizziness, drowsiness, fatigue, hypersomnia, insomnia, nausea, sedated state, headache, and xerostomia. Other side effects include: agitation, erectile dysfunction, nervousness, psychomotor agitation, tension, vomiting, abdominal pain, anorexia, decreased appetite, decreased libido, hyperhidrosis, loss of libido, and restlessness. See below for a comprehensive list of adverse effects.  https://www.drugs.com/sfx/duloxetine-side-effects.html 

Another option before the Duloxetine or opiods is a short course oral prednisone. Less dangerous side effects and you know if it helps within a few days.  Keeping me pain free since 2012. Unfortunately for me I didn't get the gluten connection until two years later so I am stuck with secondary adrenal insufficiency for the time being.

The whole thing is like a jigsaw puzzle where someone has hidden the pieces all over the house and thrown in other puzzle pieces to boot.

[HectorConvector]

37 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.

Before starting the Duloxetine (see side effects below) I would like to suggest at least week of massive amounts of vitamin D3. You'll know if it works. 10,000 iu a day or more. It is safe. It only took 4 days to show its effect on me. One trial gave kidney transplant patients over a million IU in one dose with no ill effects and there were numerous other similar trials.  The research seems to be indicating that high enough levels of D in the blood plasma works to downregulate the genes causing the inflamatory response.

Some of the side effects of Duloxetine are exactly what you are trying to relieve.

Another option before the Duloxetine or opiods is a short course oral prednisone. Less dangerous side effects and you know if it helps within a few days.  Keeping me pain free since 2012. Unfortunately for me I didn't get the gluten connection until two years later so I am stuck with secondary adrenal insufficiency for the time being.

The whole thing is like a jigsaw puzzle where someone has hidden the pieces all over the house and thrown in other puzzle pieces to boot.

I'll give some background on the duloxetine: So far out of all the medications I've been on, that was the only one that worked. It 90% eliminated my nerve pain within the first week (June 2021), but three months later (end of September 2021) -  the doctor took me off it due to mild "liver injury" - but that was also because I'd drank too much alcohol during September to that point (having been teetotal over the summer), which I've since stopped. But for the nerve pain itself, duloxetine was a miracle relief. The only side effect I noticed was slight loss of libido but I don't care about that as I'm asexual anyway. The nerve pain has only come back aggressively in the month since stopping the duloxetine - on pregabalin, which has been 100% useless. None of the anti convulsant have done a single thing for me, only the anti-depressants. 

That's why I'm going back on duloxetine, because I know it works for me and gives me relief. The pregabalin was stopped yesterday as 100% useless. On Duloxetine I was able to eat properly and bring my weight back up but now it's started plummeting in the month since going off it, due to nerve pain resurging back again in its absence. My nerve pain was brutal before I ever went on Duloxetine FWIW, back in May 2021, that's why I went on it - also that was my first time going on it.

I can try the mega dose of vitamin D for a week, though basically everything at this point is guesswork, as I don't know the true cause of this problem. I'll see what happens. But I'm pushing the limit of my tolerance on this condition right now.