somisgirl
@somisgirl
@somisgirl
Posts: 18
Joined: Jul 18, 2019
Ideas for pain relief from Small Fiber Neuropathy (SFN)
I just wanted to pass along some ideas for those of you with idiopathic small fiber neuropathy. I am a 60-year-old female in excellent health other than the onset of this about a year ago. I do not have diabetes or any other detectable health issues.
I started some new things a few weeks ago and this week I have had some remarkable relief. I am not sure if what I have done is why, or which thing might have helped, but still wanted to pass this along just to give some of you some things to try.
I wear compression socks. This seems to help with the pain and pressure I feel in my feet and ankles.
I started taking Evening of Primrose oil twice a day.
I have cut my caffeine intake by at least two-thirds and now drink mostly green or black tea. I had heard that caffeine could irritate nerves…worth a shot.
I exercise, which I have been doing for over 20 years. I think it improves circulation which I think really helps with nerve health.
I added niacin. I will aid in blood flow, also good for circulation.
I use a cream called DMSO which i put on my feet and ankles in the morning (numbs the pain)
I don’t know if any of this could be helpful for you or not, But I seem greatly improved recently……I have tried everything and am always looking for new things to try in order to function with this awful condition.
I am still taking 600mg of Gabapentin 3 times a day and 20 mg Citalopram once a day and have been for 9 months. I do not take any other medications.
Blessings to all of you and I hope there is a cure some day. I intend to keep looking for solutions that do not require medications!
kansasgal
@kansasgal
@kansasgal
Posts: 19
Joined: Feb 05, 2019
@kansasgal – I will. Second day of treatment. So far so good. Feet did not burn last night! I do have a few unhealed wounds due to loss of sweat glands…they burn a little upon application but it goes away…I am hopeful. Lmk how you do…Pam
That's GREAT news! Just tried my first application.
burningfeetinphoenix
@burningfeetinphoenix
@burningfeetinphoenix
Posts: 122
Joined: Sep 05, 2019
@kansasgal – I have socks on for the first time in two months. See photo! I'm optimistic…Pam
Liked by rwinney
terrydclaar
@terrydclaar
@terrydclaar
Posts: 60
Joined: Sep 10, 2019
@kansasgal – Just picked up my compounded Phenytoin 10% topical! Will be starting it today. How is it working for you? LMK Pam
PLEASE TELL ME THE COMPANY NAME WHO PRODUCES YOUR PHENYTOIN CREAM. THANKS, TERRY
burningfeetinphoenix
@burningfeetinphoenix
@burningfeetinphoenix
Posts: 122
Joined: Sep 05, 2019
@terrydclaar – You have to find a compounding pharmacy in your area or on-line that can make it for you. If you do get a prescription for Phenytoin 10 percent. A 60 gram supply is good for 30 days…Phenytoin is the active ingredient It is brand name Dilantin I assumed micronized for compounding. You can go on-line and find the compounding instructions…my pharmacist had to track down some of the compounding ingredients so it about 10 days or so. This is not a common request. I apply 2 times/day. Pam
nukhan
@nukhan
@nukhan
Posts: 17
Joined: Feb 04, 2019
@terrydclaar – You have to find a compounding pharmacy in your area or on-line that can make it for you. If you do get a prescription for Phenytoin 10 percent. A 60 gram supply is good for 30 days…Phenytoin is the active ingredient It is brand name Dilantin I assumed micronized for compounding. You can go on-line and find the compounding instructions…my pharmacist had to track down some of the compounding ingredients so it about 10 days or so. This is not a common request. I apply 2 times/day. Pam
If phyntoin 10% cream is so effective why are these pharma companies not producing the cream commercially. Strange to say the least
burningfeetinphoenix
@burningfeetinphoenix
@burningfeetinphoenix
Posts: 122
Joined: Sep 05, 2019
nukhan
@nukhan
@nukhan
Posts: 17
Joined: Feb 04, 2019
@nukhan – Why are big drug companies not producing Cannibus products? The Phenytoin topical was developed and studies done in Europe. Just like the freezing cap for chemo patients to keep patients from losing hair. Took years to get to the US. Pam
Thank you. Is there a way for this group to highlight this issue perhaps through mayo clinic to use its influence for some phamaceutical companies to produce phyntoin 10% cream. This could be one way for some companies not only to earn easy money but also provide some relief to millions of neuropathy sufferers. Converting the already available Phyntoin in capsules form into cream may not be such a huge task for any pharmaceutical company. Just a thought.
burningfeetinphoenix
@burningfeetinphoenix
@burningfeetinphoenix
Posts: 122
Joined: Sep 05, 2019
@nukhan Well double blind studies have not been done for example…this is a "fringe" off label use. Many things made at compounding pharmacies are like this. My old, now retired, dermatologist "cooked up" his own compounds in his office or had me go to a compounding pharmacy for mystery ointments!..These often are off label, not FDA tested etc. Dilantin is an old drug off patent. No money to be made…Pam
rwinney
@rwinney
@rwinney
Posts: 1630
Joined: Apr 28, 2019
@nukhan Well double blind studies have not been done for example…this is a "fringe" off label use. Many things made at compounding pharmacies are like this. My old, now retired, dermatologist "cooked up" his own compounds in his office or had me go to a compounding pharmacy for mystery ointments!..These often are off label, not FDA tested etc. Dilantin is an old drug off patent. No money to be made…Pam
Same goes for Low Dose Naltrexone.
rwinney
@rwinney
@rwinney
Posts: 1630
Joined: Apr 28, 2019
Same goes for Low Dose Naltrexone.
…no FDA approval, off label use, made at a compounding pharmacy.
terrydclaar
@terrydclaar
@terrydclaar
Posts: 60
Joined: Sep 10, 2019
@terrydclaar – You have to find a compounding pharmacy in your area or on-line that can make it for you. If you do get a prescription for Phenytoin 10 percent. A 60 gram supply is good for 30 days…Phenytoin is the active ingredient It is brand name Dilantin I assumed micronized for compounding. You can go on-line and find the compounding instructions…my pharmacist had to track down some of the compounding ingredients so it about 10 days or so. This is not a common request. I apply 2 times/day. Pam
Thanks for your reply
burningfeetinphoenix
@burningfeetinphoenix
@burningfeetinphoenix
Posts: 122
Joined: Sep 05, 2019
rwinney
@rwinney
@rwinney
Posts: 1630
Joined: Apr 28, 2019
@rwinney – I have been researching the use of Naltrexone for Neuropathy and found a few recent articles. Seems there are some studies and papers on it but not many that I can find. Sounds like this needs to also be made in a compounding pharmacy? Pam
Yes it does. Don't think it's for me as I have been on hydrocodone for 2 years and LDN does not provide immediate pain relief for transition. Seems best suited for someone who is just coming into pain as a beginning option. All this crap rattles my brain honestly.
kansasgal
@kansasgal
@kansasgal
Posts: 19
Joined: Feb 05, 2019
Some of this group's members have experienced some relief from pain by using Phenytoin Cream. I am one of those members and want everyone to be aware of the benefits. I have been using the cream (5% Phenytoin cream) 3 times a day for 3 days now. I actually cried tears of joy when I woke up this morning and was lying in bed with no pain in my feet. This has not happened in about 6 years! A compounding pharmacy has to make the prescription cream. I know Pam is using the 10% Phenytoin cream and said it has helped with her burning feet. My neurologist called in my script for 5%. There is a study you can read, John Bishop posted a link to it a few days ago. I sincerely hope all of you find some relief too!
I had some pain on day 3, but I think it was less than before using the cream.
@burningfeetinphoenix
@kansasgal – I will. Second day of treatment. So far so good. Feet did not burn last night! I do have a few unhealed wounds due to loss of sweat glands…they burn a little upon application but it goes away…I am hopeful. Lmk how you do…Pam