Chronic Pain members - Welcome, please introduce yourself

@jeanie26
Hi Jeanie, I am sorry to hear that you and your daughter both suffer this awful pain from neuropathy. Linda, my wife, does as well. To get to the point of your post, yes, Linda has used kratom. We found out about it from Lori, another member, @lorirenee1 , who uses it extensively, probably at least 3-4 times per week I believe and she swears by it. Lori recommended a company named Etha that sells very pure kratom, so I bought a few sample bags of the pills ( which are pure kratom -no additives) for starters and it did help the pain. Linda's problem with it is that it seems to make her kind of out of it, and this effect lasts for many hours. If she takes it in the evening, it cuts the pain way down, then she goes to bed, and in the morning the "out of it" feeling persists on into the next day. So for this reason she is reticent to use it unless she is desperate. Linda's go-to is marijuana. She uses that more than anything else (about 3-4 days per week I would estimate) to get pain relief. But you can find more info about kratom on Connect by using the search window at the top of the page you are reading and enter the word kratom and you should find lots of references. There is also a lot of info online. The Etha company has some, and it's website is ethanaturals.com.

I hope your leg pain does not progress further. Linda's PN pain is in her feet, and they BURN like crazy, all day most days. This is no fun for her, or for me for that matter. Good luck Jeanie, my best to you. Hank

@nlong53
Hi Nancy, we live just up I-24 from you in Franklin, TN. Welcome to Connect! Do you suspect that the source of your pain from neuropathy, because it sure sounds like it. Although usually it appears bilaterally in both limbs. So it would be good to confirm one way or the other Have you been seen by a doctor about it? There are different tests they can do to diagnose neuropathy. If interested, here is a good Mayo page that lists all or most of them: https://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/diagnosis-treatment/drc-20352067

My wife has neuropathy in both feet and ankles. They burn all the time. She has avoided pain meds as she is very sensitive to taking them. She tried gabapentin once and got no pain relief but several unpleasant side effects. So now she mostly uses marijuana for relief. Can I ask, how long has your foot been bothering you and did it start gradually or suddenly, for no apparent reason? Just curious. I do know that if it's PN, there are a lot of things that can cause it, some not obvious at all.

I hope you can find answers as well as solutions. Best, Hank

Hank, thank you so very much for your reply, You are the first that I have heard anything about someone that has actually taken Kratom. How old is your wife. I am 73 and wan to know if it's safe for seniors to use. Also does your wife have a Dr. order for her use of marijuana? and if so where does she get it from. I have never used Marijuana and wouldn't have a clue how to go about getting it. My son could probably get some for me but he gets his from the street and I don't think I would trust it. Also does the Kratom show up in ones urine.? I really appreciate your information and will check it out. I do hope your wife finds something that works for her. Keep me posted if you hear of anything else. Jeanie

Hello @nlong53 and welcome to Mayo Clinic Connect. I can see you are looking to connect with members who may have similar experiences of chronic foot pain. What you are describing does represent what other members share in the Neuropathy group so would like to invite you to that group if you are interested: https://connect.mayoclinic.org/group/neuropathy/

Like @lioness inquired, I too am wondering how long this has been your experience and also if you've ever sought medical attention for it?

Frank, When I was in high school, I had conjunctivitis, my eyes were red, felt like sand in my eyes, hurting, burning. I only know they hurt for a long time. My mother took me to the eye doctor and he diagnosed it, gave me prescriptions for it. They helped immensely. Have you gotten help from any eye doctor? Whatever he prescribed was a miracle to me!

@jeanie26
Hi Jeanie, I had never heard of kratom before last year from this forum. Linda will be 74 next month. She obtained her stockpile of medical marijuana when we lived in California over 6 years ago, and yes she did have a prescription for it from an MD. But kratom is mostly legal I believe, though you'd have to check about your particular state. I don't know whether it shows up in the urine, though it should not matter if you are using it legally. I would encourage you to try kratom (they have pretty decent deals on sample bags) and see how you like it. It can be slightly addictive if used too often but should be okay to use up to a couple times per week, no problem. Lori @lorirenes1 can fill you in more if you send her a PM (private message) through Connect. Best, Hank

Hello all. I'm new to this discussion and have come to you needing any help you can give me. My husband has had New Daily Persistent Headache syndrome" for 20 years now. It started a few weeks after he had major ear surgery (mastoidectomy) and hasn't stopped since. The pain has grown worse over the years. At first, he could still work with the pain, but after a few years, he had to go on disability. We tried to get a diagnosis and treatment for years until he finally flew to Rochester to the Mayo Clinic. They diagnosed it as NDPH. That was many years and many failed medications ago. Still, there is nothing that relieves the pain except alcohol. He's turning into an alcoholic before my eyes and I can't really blame him because I know how much he hurts. Are there new treatments or even surgery for this type of pain that anyone knows of?

My name is Anne and I am writing this for my 17 yr old son named Rene. He has been on a horrible journey with pain that has lasted four years and involves his digestion, pelvic floor, eyes, back head and legs. It started with extreme and constant gut pain. After seeing a gastroenterologist, and having numerous tests including blood, urine, endoscopy, and colonoscopy, he was diagnosed with IBS. After consulting with a dietician and following a FODMAP elimination and reintroduction diet he identified his intolerance to lactose and other foods that he avoids. This helps but did not eliminate his pain. after about a year he developed severe penis pain and urinary issues which were eventually diagnosed as pelvic floor disfunction. Months of PT with Pelvic health specialists enables him to control the pain minimally. About a year later he developed dry eye which was treated with gland plugs, Restasis and FML steroid drops, which left him with no more dry eye, but instead and unbearable stinging and burning sensation on the surface of his eyes. Unable to look at screens, go outdoors or basically be in any lighted situation. We then were referred to the Rheumatology team who put him through tests, but found nothing and sent him to neurology where they diagnosed ocular migraines. After MRI, DHE, Lumbar puncture and ketamine, they determined they could not help him He began to lose all hope of being healthy again. He had to quit college and come home. I got him connected with the comprehensive pain clinic here and they referred him to Dr Pedram Hamrah where he was diagnosed with Corneal Neuropathy . DR Hamrah referred Rene to another doctor and he is getting tested for small fiber neuropathy. In the meantime Rene continues to get worse and be in more pain that migrates throughout his body. He is hopeless most of the time and we are struggling to keep up spirits. I fear he may give up al together. Is there any kind of peer support group for young adults with chronic pain that you are aware of? Or one for SFN specifically?

Dear Anne,
I am so sad to hear of all the agony your young son has been facing. I want to suggest you purchase a book called "Say Good-bye to Illness" by Devi S.
Nambudripad.She is a M.D., D.C., L.Ac, Ph.D, (Acu) This book is a revolutionary treatment for Allergies & Allergy-Related Conditions. It tells you of Nambudripad's Allerty Ellimination Techniques or NAET. Once you read about this treatment and purchase her book you can look for a NAET physician in your surrounding area. This treatment saved my life. I also was diagnosed with IBS 30 years ago. I also went through a scratch test of various foods on my back to find out what I was allergic to. It ended up that I could only eat 10 foods, which I did for probably 10 years and I felt amazing. All of the inflammation and pain left my body. Then a lady that I knew told me of this NAET treatment that would allow me to be treated for all the various allergic foods I was allergic to. The beautiful thing about this treatment is it is non evasive. I am not going to go into the procedure because it would take too long. I need you to do your home work and ready about this amazing treatment.
https://www.amazon.com/s?k=naet+guide+book&crid=28WE749HL54D6&sprefix=NAET%2Caps%2C186&ref=nb_sb_ss_ts-doa-p_8_4
to find the book.
I continue to use this wonderful allergy treatment in my life even today. I seem to have a knack for developing allergies in new things. This does not mean your son will. Many people once treated will be good for life. To be honest I am good to most things, but once in awhile something will creep in and my husband will give me a treatment. We had to learn this treatment because we moved from our area and there is no practitioner in our area.
My reaction to the allergen has always effected my digestive tract, headaches, fatigue and brain fog. You will be amazed as to all the things a person can be allergic to. I could write you a book on it, but I won't. Most family physicians know nothing of this type of allergy treatment. I see where you said he continues to get worse. Please do not hesitate with this info.
I can give you the name of a physician in Bend, OR, but I don't know if you are in for traveling or where you live. Let me know.
Remember it is non-evasive. No drugs or shots. If you want more information please let me know. This book is the best start I can give you. Good luck. I will pray for you and Rene
Another method too is this. I went to a allergy clinic in Seattle WA that did very specific blood test and various other test that I do not remember and they came up with the same allergies for me. It is a very specific series of blood test. They could not remove the allergens from my body, it was only to stop or stay away from whatever bothered me. NAET is great and so is my doctor in Bend, Oregon. Let me know if you want his business number. He is VERY GOOD at what he does. The BEST I have ever been to.
I just don't want anything to happen to Rene. Jeri

@racox
Hi, I am sorry your husband is dealing with this condition, I just looked up some info about it as I had never heard of it before. Here is a link to a discussion on Connect specifically about NDPH: https://connect.mayoclinic.org/discussion/new-daily-persistent-headache/?utm_campaign=search

My wife has headaches which have been occurring persistently for about a year, I have no idea whether it is NDPH. I am interested to find out now that I hear about this. The one thing that she does that seems to ease her headache pain is a special tea from a company in New York City. It is called Shifa Turmeric Headache Relief Tea. Here is a link to a post I did about it a while ago:
https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/?pg=185#chv4-comment-stream-header
I just went to Amazon and I see that it is currently unavailable, but this happens periodically and I have always been able to get it if I waited a few days or weeks (you can have Amazon email you when it is back in stock). My wife tries to keep at least 2 bags on hand always because of this.

That's about all I can offer you. Perhaps you will find some additional help from the discussion I mentioned above about NDPH. I wish you and your husband good luck with trying to work through this terrible affliction that he is suffering from. Best, Hank