Seeking relief for small nerve peripheral neuropathy

[Arjay33]

1) In June 2016 I was diagnosed by a Toronto Pain Specialist as having Small Nerve Peripheral Neuropathy, described as Idiopathic Pain. My symptoms began in June 2015 in my legs and feet and include freezing cold, numbness, burning, tingling and throbbing pain (mostly on my left side).

2) For a few years before that, I experienced burning hot feet and sometimes used an ice pack at night. I only recently made a connection that hot, burning feet may also be a symptom of neuropathy.

3) In October 2015 I saw a Clinical Neurophysiologist who did electrode and needle testing and diagnosed no nerve disease or damage.

4) So far, my treatments have included 4 therapeutic massages in January 2016.

5) Since June 2016 I have been under the care of a Pain Specialist in Toronto, have had 6 manipulative therapy treatments and acupuncture, and am currently taking Lyrica (300 mg a day) and Oxycodone (30 mg a day) for my pain.

6) In August 2016 I attended a pain institute in Toronto where I had 6 treatments including stenosis infra-red therapy, decompression, vibration, etc.

7) I have used a TENS machine at home (transcutaneous electrical nerve stimulation).

8) I do get great relief from walking and some comfort from heating pads and blankets. Also using “The Stick” brings some relief.

9) None of these treatments nor drugs have resulted in an improvement and Peripheral Neuropathy is negatively affecting all aspects of my life. I feel disheartened but do keep an open mind about new treatments and a smile on my face most of the time. I wonder how other people cope with PN and whether have any tips that work for them.

[Shorejds]

Arjay. Replying on my wife's behalf. She has raidly progressing PN also ideopathic. She sees Neurologists to get updates as to progress. One of them gave her a cream to spread on her feet with Lidocaine and Ketomene in it. It offers some brief relief. She finds Tylenol 3 and XS also help a but. But like you has tried many meds and other things. No real help. One Neurologist said there is no cure or one magic thing that helps. For everyone it's different. So we encourage trying it all. Find some respite in whatever you can. We may try Cannibis shortly.

[Arjay33 in reply to Shorejds]

I'm so sorry to hear about your wife's PN - we all seem to suffer together. I find it difficult to accept that there's no cure. Do you ever wonder if the doctors just can't be bothered or don't have the resources to find an answer to our problems. Perhaps it seems trivial compared to some other complaints (and perhaps it is) but that's not a lot of comfort. As I mentioned, has your wife tried "The Stick"? If you're not familiar with it, Google it and it's readily available online. I'm also starting to think down the cannabis route but unfortunately I tried some "cake" made by a friend last week and had a bad experience. I totally zoned out like a zombie, didn't even feel high and it didn't help ease the pain. Today I bought a special lollipop and will try that and see what happens. Have to be careful mixing MJ or cannabis with my meds - I don't want to screw around too much. Let me know if she finds anything that helps. Good luck to your wife.

[Arjay33]

I like your User Name - at least it has a positive ring to it - good for you. I'm so sorry you are suffering, too. I have heard that sometimes PN is misdiagnosed and it could be something else. I'm going to try and get an appointment with a neuro-muscular neurologist in the Spring. Have you tried "The Stick"? It has helped me before I go to bed. If you're not familiar with it, Google it and it should be easily available online. I'm assuming you live in the United Kingdom? I'm from north-west London originally. Good luck to us both. I'm going to keep plugging away to try and find some answers - we can't just give up, can we?

[Kiwi13 in reply to Arjay33]

I to have PN. Live in the U.K. Surprised people don't seem familiar with PN.

Could you please tell me what "The Stick" is. Burning and pain always worse at night. Doctor says it's because it's then we relax. Hard to relax when feet are on fire.

[Arjay33 in reply to Kiwi13]

It's a flexible stick massager which you run up and down your pain area. I use it for a few minutes before going to bed but you can use it any time of day. It's now half the price I paid for it last year, so it's a good deal. I find it somewhat comforting. Try Amazon.com. This is the link I used:

amazon.com/Product-Stop-Fle...

[jazzmin]

You may want to try cannibus oil CBD I take it and am noticing some improvement in my symptoms I have only been on it for about two weeks, don't notice any major side affects. Without the THC you don't stoned,cheers

[Ginakins in reply to jazzmin]

Hi jazz in

I have very severe chronic pain from neuropathy. Got my card yesterday. Went to dispensary. Got 1-1 cbd and thc. Talked to them today cuz I have no relief at all. None. Expensive way to trial and error. The cbd needs to be higher. How long did it take you to figure out where you got the relief? At what level and how often you increased? I can not take this excessive pain. Been through everything. Last hope

Ginakins

[jazzmin in reply to Ginakins]

I am now taking 1:3 there is some THC in this batch that I am taking now. I am also taking Oil soluble Vitamin B1 at the same time. cheers

[Ginakins in reply to jazzmin]

Hi jazzmin. Ink what your condition is but for neuropathy it's known for a higher CBD. What do you have? The pain is to intense. Not eating or sleeping. I'm a wreck. Going tomorrow to get a higher ratio. I'm dying

[jazzmin in reply to Ginakins]

I have neuropathy as well as tendonitus. I have to assume that my pain is not as bad as yours . What I suffer from is muscular spasms and tendon ruptures as well as neuropathy. All I know is that when I take my CBD in conjunction with my vitamin supplements I feel better, that said neuropathy is a very complex

problem. What works for me may not work for you, cheers

[Ginakins in reply to jazzmin]

Thanks. I'm going to read back you take forv supplements. I totally believe in supplements. I take a bunch of them. If I can do things through herbal or supplements, I do. The ratio I got today is a higher CBD. I'm in even more pain tonight. Didn't think possible. May I ask what ratio you take and did it take a while to notice anything?

Thanks

[jazzmin in reply to Ginakins]

i am taking 1:3 and the answer is yes I did not notice anything for two weeks and it is quite subtle,keep in mind that I also am taking Oil soluble B1 and six thousand units of vitamin D. So my improvement may not be entirely due to the CBD Oil but a combination of everything, cheers

[Ginakins in reply to jazzmin]

Thanks jazzmin. I take b-1,6,12. Wonder what the difference is with water soluble. I'm still trying to figure one out. Nothing's helping. How much and how often do you take it?

[JenDxbc]

Hi,

How do I cope with PN? That's a good question. I think most days I do OK.

Medication: If I miss my meds (Lyrica and Effexor) it takes my body about 12-24 hours to get back into relief mode. So, l rarely miss my dosage. I carry extra medication in my purse. I have my drugstore arrange to call me and renew my prescriptions automatically so I don't run out. Very important. I have my meds readily available by my bed so it is the first thing I do when I wake up. When I was working I would have to set alarms on my phone to remind me to take my pills.

My Mantra: Try to stay ahead of the pain. That may mean taking medications when you feel OK. Just do it! Take the meds and know that they are what is helping you stay pain free.

Get an IPad: If you don't have one, get one. If you like reading, researching, music, shows, yoga, or whatever, it is right at your fingertips. It keeps my mind busy and that helps my pain...a lot. I am a mightowl so it is essential to keep me distracted from pain.

Mindfulness Course: Your doctor can refer you to a course in Ontario, Canada where I live. This will cover the costs. Probably everyone can take away something from this approach to pain.

[Arjay33 in reply to JenDxbc]

Hi, I'm not familiar with Effexor - do you use it for use other than an anti-depressant? I don't want to feel that I have to take drugs for the rest of my life, especially since I don't really feel they help a great deal. I dare not go off them without my pain specialist's advice and I don't know if I went off them I would have serious withdrawal symptoms.

You mention a Mindfulness Course. Do you mean OHIP will cover the costs and have you had experience with this kind of course and, if so, has it helped you? I'm going through a rough period at the moment, both physically and emotionally. I'm sort of on the edge trying to deal with the pain and discomfort. My only relief is from walking and sleeping well with drugs, heating pads and blankets. Sitting is such a bitch and I do more of this than I want to. Do I have to endure this for the rest of my life? There must be a better answer to dealing with this affliction / disease, or whatever the hell it is? Sorry, I've been venting a bit lately. Good luck to you.

[JenDxbc in reply to Arjay33]

Hello Arjay33....Haven't heard back from you. I speak for everyone when I say we miss your bitching and venting...Lol. Have you been walking lately?

[Arjay33 in reply to JenDxbc]

Hello JenDxbc - I'm sorry I haven't replied to your long and helpful post. My life has been very busy lately and also very painful. I was quite surprised by your last post. Firstly, you cannot speak for everyone and secondly I was not aware I was bitching. Yes, I was venting about my discomfort - I thought that this website was to help others and also to be able to express some of the problems we are going through. I'm sure you've heard of the saying "a trouble shared is a trouble halved". I try and walk about 50 minutes every day and do stretches in the morning. I will look into the mindfulness class when I get back to Toronto. My pain specialist has already mentioned this to me. By the way, your last post didn't make me feel good - I was already having a bad day.

[JenDxbc in reply to Arjay33]

Ohhhh. I am so very very sorry. I hope that I never upset you again. I feel terrible. My intention was to add a little humour and maybe a smile. The comment was not meant to be mean. Quite the opposite. I was truly and honestly worried about you. I so hope you will accept my apology. And I wish you success in getting into your mindfulness group. I respect that you may choose to not accept my apology...I will live with that. Jennie

[JenDxbc in reply to Arjay33]

And also thank you for your honesty. I am such a dumb-ass and made a regrettable mistake. And no I had never heard that saying before...But it's real. It addresses the importance of how sharing a burden can be healing.

[JenDxbc]

Don't apologize for venting. I get it and I am happy to listen if it helps. It would be unbearable to just live with nerve pain/ affliction or whatever you want to call it.

To answer your question about Effexor - yes it is used as an antidepressant but it also lessens nerve pain. Lovely side-effect. Lyrica was initially used as a seizure control drug - but was also discovered to lessen nerve pain. You may not have had previous positive experiences with medication...but if you did....life gets rosier in every way.

Last spring my physiotherapist mentioned to me that a mindfulness course was being run soon. She said all I needed was a referral from my doctor. I got the referral and was fortunate to get in. I think the wait time was only a couple of months. I believe it was two hours once a week for 8 weeks. Our group was 20 people. The only focus Our instructor had was to teach different mindful strategies, practice and review these strategies, do follow up tasks that were mostly observational, and if you wished to, share what worked and what didn't work for you.

The fee of $400 was waived which made it was a no-brainer for me. Our instructor said the more you put into this course the more you will get out of it. My follow up was pretty good the first few classes but minimal towards the end of the course. But I had nothing to lose by going to class even if I didn't do the follow up tasks. She handed out notes each class. Someday, when I need to, I will go back and reread the course and review the strategies. I think just having a bit of experience with meditation helped me somewhat.

Hope this long response was worth your time. Warmly, Jennie

[jackieorr]

Hi fellow Canadians, I have severe idiopathic neuropathy and find a Canadian natural product works wonders for me....Liv/Relief......check it out and see if it is good for you. Jackie Orr

[Hidden in reply to jackieorr]

Is this a cream or a pill. I live in the US & was recently diagnosed.

[Hidden]

New here... what is The Stick?

[Arjay33 in reply to Hidden]

The Stick-Self Roller Massager 17" Travel Stick - I run it over my leg before I go to bed for a few minutes and find it helps ease some of the knotted nerves and muscles.

You can get it from Amazon:

amazon.com/Stick-Self-Rolle...

About the product:

Improves flexibility, recovery, performance, injury prevention, injury therapy

Eliminates muscle soreness & pain

Can be used in the workplace to manage production fatigue and prevent repetitive strain injuries

The center rod is surrounded by spindles which roll over the muscle and has "memory" which allows the rod to return to its original position. Handles provide maximum comfort in the grip

Available in three sizes 17" Travel Stick, 24" Original Stick and 23" Stiff Stick

Hope this helps. You can get it from other companies as well but I think this one is worth paying a bit extra for. I ordered another one and found the plastic rings sometimes pinched my skin.

[Hidden in reply to Arjay33]

Thanks this does help... l will look forward to getting one.