Unknown Cause or Idiopathic SFN

Posted by katec @katec, Nov 5, 2019

Hello. I was wondering if there were any folks out there who were at one point labeled “idiopathic” or “unknown cause” SFN, BUT later found the cause?

I’m asking because my son (15 years old) has a positive biopsy for SFN. We have done every blood test imaginable and thorough genetic testing to try and pinpoint what is causing his SFN so we can guide treatment. So far, nothing shows up out of the ordinary on any test. His B12 is high, which is weird since he is homozygous for MTHFR, but other than that everything comes back normal on blood tests and his genetic testing shows no known mutations.

His doctors have tried many medications and he doesn’t respond to those in either a negative or positive way. The doctors are pretty stumped, so I was wondering if anyone else has had a similar situation and finally did find something (maybe outside the box of normal testing) that they think is causing the SFN and were better able to treat it? Ideally we’d like it to be autoimmune, so we could start IVIG or another type of immunotherapy (even though he didn’t respond to a 30 day high dose of prednisone) but nothing in his bloodwork is pointing in that direction.

Thanks so much!

Liked by Lisa Lucier

@albiet

@jimhd I started taking imipramine 30 years ago after 1 year of massive pain broke me down. I believe it saved my life. It took another 20 years before I found out I had SFN. I get depresses when the pains come on. I had a 9 year break but the last year has been bad again. It confusing is as you get older it’s hard to find out if something other than SFN is causing the problems. The only reason I’m stopping the mirtzapine is because of the tinnitus. I was hoping it would help more with sleep but I guess I was on too little. How much imipramine and mirtzapine are you on. I interested in knowing how high the 2 of the drugs can be taken together

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@albiet

Imipramine is at 100mg and Mirtazapine is 45mg. The pain specialist said he doesn't want me to go any higher on the Imipramine, but I've seen online that people take higher doses.

I also take 15mg of morphine sulfate contin 2-3 times a day, diltiazem one a day, Klonopin at 1mg one or two at bedtime or as needed, Wellbutrin 450mg at bedtime, Meloxicam and Tylenol for arthritis, Oxybutynin for urinary issues, Claritin in the morning, and Benadryl at bedtime. I take a muscle relaxer when my back pain is bad from hard work and Percocet for the same reason. I take those two rarely, like 4 or 5 times a year.

It's a lot, but each one has a reason, and all of my doctors know what's on my list of medications.

Jim

REPLY
@azza1

Hi everyone ,
i am on Lyrica brand name.
Decarb High CBD is
https://www.cbdschool.com/what-is-decarboxylated-cbd/

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Hi. I took time to read back through your history of posts and I have a better understanding now of your situation. You and I are very similar. I have Small Fiber Poly Neuropathy and was told from a B12 deficiency (219). My b12 levels are normal now, however no help to my nerves so I might as well be idiopathic….the damage has been done. Neurologist says maybe if lucky my nerves may regenerate 2-3 years. I think that is big farce. My symptoms continue to progress and parallel yours except my damage is neck and up back of head, across backs of shoulders, down arms and into hands (right side being worse), both full length of legs and feet (right foot and left calf being worse). Aching in legs, cramping in legs and arms, burning skin, vibrations, shocking pains, limited walking and many other things. It truly torments me. Thank you for sharing your story and success with CBD. I'm on Lyrica CR, Duloxetine and hydrocodone 5mg. Hydro has not been working well anymore so I'm applying for my medical marijuana card and will finally be making a change to cbd/thc. I also receive weekly lidocaine infusions which are limited in their relief as well and disappointing and inconsistent overall. Plasmapherisis would be next option and I'm told IVIG is off the table because Medicare won't cover it. Thanks for listening and again for the helpful information.
Together in perseverance! Be well.
Rachel

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@albiet

@artscaping my dr today mentioned cbd and medical marijuana. i'd lovve to know more about your experiences with it

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@albiet, I have mentioned it this evening and yet I think you may want more information….product, dosage and timing, etc. It is after midnight here and I have to get up at 7 am. Would it be o.k. if I put this on my agenda for tomorrow afternoon. I will put it on my calendar to remind me. Have a restful sleep. Chris

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@azza1

Hi Albiet
from my experience , the only thing make reduce for pain with me is the High CBD .i am taking it from 2 years but in the beginning i wastaking as a ora in a shape of oil under the tongue but after a while it caused a stomach upset for me and the pain clinic change the prescription to Decarb High CBD
please , read this link to know well what is that .
https://www.cbdschool.com/what-is-decarboxylated-cbd/
Thank you

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@azza1 So far I can only find articles describing what Dearb High CBD is and how to do it yourself. Is there a company that sells it already done that I can just buy from?

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@rwinney

Hello. What form do you take it in? Oil still since you changed prescription?

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Hello ,
No after the CBD oil cause a stomach upset , i am on Decarb High CBD like powder and fill it in capsule and take it as a regurall medications .

Please read this link :
https://www.cbdschool.com/what-is-decarboxylated-cbd/
Thank you

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@katec

@azza1 So far I can only find articles describing what Dearb High CBD is and how to do it yourself. Is there a company that sells it already done that I can just buy from?

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Hi Katec ,
Yes there is a company here in Canada. It is name Hexo company previously it was name Hydropathy. It is the only company even in Canada sell this kind of CBD . But even though I can tell you something in your ears , I do it one time on my oven when it was back ordered in this company and I can’t live without pain without it .
Due that I did research and asked my pain clinic
How can I do it by myself at that time .
I hope I answer on your questions.
Thank you

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@albiet

@azza1 can i ask you what decarb high cbd is? is that a brand od cbd?. also, i was curious if you take lyrica brand or the generic. since you are a pharmacist, i was wondering if there is a big difference in the brand vs generic. thank you

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Hi ,
There is no difference between the brand name and the generic in the medications . But Lyrica alone doesn’t reduce the pain of the SFN .

REPLY

Has anyone experienced fevers daily? Have you been diagnosed with Fever of unknown origin? I realize this discussion has nothing to do with my issues but I wanted to ask. What is a good medicine to take for diabetic neuropathy?

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@azza1

Hi ,
There is no difference between the brand name and the generic in the medications . But Lyrica alone doesn’t reduce the pain of the SFN .

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@azza1 Lyrica was starting to treat my pn pain as I was increasing the dosage. Unfortunately the side effects landed me in the hospital, incoherent. So, end of Lyrica. Bummer.

Jim

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@albiet

@artscaping my dr today mentioned cbd and medical marijuana. i'd lovve to know more about your experiences with it

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Good afternoon @albiet, Thanks for your sensitivity about my time. I didn't see any more posts from you about this subject, so I will share my experience and let you know what dosages and products I now find very helpful.

My experience tells me that for the medical cannabis user there are really only 2 and possibly 3 products that seem to fit the bill. They do not include, edibles, beverages or flower.

My morning begins with a 2:1 CBD/THC tincture. Start with 1/2 dropper and increase as recommended. Make sure you have something in your tummy and this product will be your best product for pain control. If you use the method of holding the tincture under your tongue you may or may not feel effects in 15 minutes or so. If you swallow the tincture it has to go through your digestive system and takes 45-60 minutes. Make sure you purchase it from a legal, authorized dispensary. Legalization increases the opportunity to regulate the growing and harvesting of the plants. (A hot as you can stand it shower is also at the beginning of my day.)

My morning also includes a 3:1 CBD/THC balm on my hands, wrists and lower arms. I have been using this product for several years. It shuts off the tingles and needles for 1-2 hrs. Better than the 15-20 minutes for lidocaine compounded creams. I probably use this product 3 times a day……with the last application at bedtime.

Midday…..I up the dosage for a 1:1 CBD/THC tincture. Start using the 1:1 with just 1/4 dropper and work up.
Bedtime….another 2:1 tincture.

How has this worked? It is my anchor to the world as I know it. I have learned to keep the pain under control, by being more aware of my physical condition and then making adjustments in the cannabis dosage.

Let me know what follow up you still need. When do you see your physician? Have health and wellbeing. Chris

REPLY
@grahamb

Has anyone experienced fevers daily? Have you been diagnosed with Fever of unknown origin? I realize this discussion has nothing to do with my issues but I wanted to ask. What is a good medicine to take for diabetic neuropathy?

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Hi, @grahamb – how long have you had diabetic neuropathy? Have you taken any medications to date for it?

I'd like you to meet @manassen1 @johnbishop. @blocker @jeffrapp @harper7745 also may have some thoughts for you on medications for this condition.

Has your doctor indicated that the fevers you are experiencing have a tie-in to the neuropathy?

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@grahamb

Has anyone experienced fevers daily? Have you been diagnosed with Fever of unknown origin? I realize this discussion has nothing to do with my issues but I wanted to ask. What is a good medicine to take for diabetic neuropathy?

Jump to this post

Hello @grahamb, I would like to add my welcome to Connect along with @lisalucier and other members. Mayo Clinic has some good information on the different treatments/medications for pain relief for diabetic neuropathy as well as some lifestyle and home remedies information here: https://www.mayoclinic.org/diseases-conditions/diabetic-neuropathy/diagnosis-treatment/drc-20371587

Liked by Lisa Lucier

REPLY
@lisalucier

Hi, @grahamb – how long have you had diabetic neuropathy? Have you taken any medications to date for it?

I'd like you to meet @manassen1 @johnbishop. @blocker @jeffrapp @harper7745 also may have some thoughts for you on medications for this condition.

Has your doctor indicated that the fevers you are experiencing have a tie-in to the neuropathy?

Jump to this post

About 5 yrs I've had neuropathy. No I have not taken any meds for it trying to do research to find something that will help. No doctor can figure out the fevers low grade 99.2-99.9 and some nights I can have a fever as much as 101 ???? I have psoriatic arthritis but my rheumatologist says it's not causing the fevers.. This has been going on since Feb 2015

REPLY
@artscaping

Good afternoon @albiet, Thanks for your sensitivity about my time. I didn't see any more posts from you about this subject, so I will share my experience and let you know what dosages and products I now find very helpful.

My experience tells me that for the medical cannabis user there are really only 2 and possibly 3 products that seem to fit the bill. They do not include, edibles, beverages or flower.

My morning begins with a 2:1 CBD/THC tincture. Start with 1/2 dropper and increase as recommended. Make sure you have something in your tummy and this product will be your best product for pain control. If you use the method of holding the tincture under your tongue you may or may not feel effects in 15 minutes or so. If you swallow the tincture it has to go through your digestive system and takes 45-60 minutes. Make sure you purchase it from a legal, authorized dispensary. Legalization increases the opportunity to regulate the growing and harvesting of the plants. (A hot as you can stand it shower is also at the beginning of my day.)

My morning also includes a 3:1 CBD/THC balm on my hands, wrists and lower arms. I have been using this product for several years. It shuts off the tingles and needles for 1-2 hrs. Better than the 15-20 minutes for lidocaine compounded creams. I probably use this product 3 times a day……with the last application at bedtime.

Midday…..I up the dosage for a 1:1 CBD/THC tincture. Start using the 1:1 with just 1/4 dropper and work up.
Bedtime….another 2:1 tincture.

How has this worked? It is my anchor to the world as I know it. I have learned to keep the pain under control, by being more aware of my physical condition and then making adjustments in the cannabis dosage.

Let me know what follow up you still need. When do you see your physician? Have health and wellbeing. Chris

Jump to this post

@artscaping thank you so much for your detailed schedule and info on medical marijuana. I’m sorry I haven’t responded earlier but just saw the replies. I did start a new thread on cbd and need to go there also to see if anyone has posted. I went to the neuro that specializes in SFN and pn. He wants me on lyrica but I’m holding off as long as possible. I upped my imipramine to 200 mg 2 days ago. I was at this and also 30 mg cymbalta earlier in the year but had to cut back as I was getting tremors. Going back to 200mg imipramine has helped me sleep at least 5-6 hours the last 2 days. I’m feeling slightly better but know it’s short lived. I still don’t know why tinnitus has started this year and increased steadily. I was told also that my back has 3 really bad herniations – 1 cervical and 2 thoracic and should see a neurosurgeon . Said don’t think I need surgery right now but should see him now so you know who to go to as it will one day become a problem. Have to get signed up medical marijuana to try

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@albiet, Good evening. Thanks for your response. I wanted to show how you can totally "manage" the SFN pain during the day with a natural medicine without side effects, that simply relieves symptom pain.

We know that at this point there is no cure for SFN, so we are not trying to treat anything…. just mask the pain so that we have the best quality of life possible.

When I read your current list of medications, it is overwhelming. And even with medical cannabis, you may still need to address the anxiety and depression that most of us try to conquer. I take Cymbalta in the morning to help my anxiety enhanced recent memory issues. It has made a huge difference in how I approach my day……sort of "Que sera, sera." Sleep peacefully, Chris

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