Living with Neuropathy - Welcome to the group

Posted by Colleen Young @colleenyoung, Jul 14, 2017

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

suezq: I have had physical & occupational therapy.
My neuropathy is in my feet, lower legs, hands & lower arms. The Occupational therapists, in particular don’t know how to help. In general the Physical & Occupational therapists are trained more for helping patients with broken bones, injuries, recovery from surgery, etc. They aren’t trained for working with patients with chronic neuromuscular conditions. I’ve asked my doctors if they can help me find therapists who know how to help patients with conditions such as mine. Everyone seems “clueless”.

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@suezq

suezq: I have had physical & occupational therapy.
My neuropathy is in my feet, lower legs, hands & lower arms. The Occupational therapists, in particular don’t know how to help. In general the Physical & Occupational therapists are trained more for helping patients with broken bones, injuries, recovery from surgery, etc. They aren’t trained for working with patients with chronic neuromuscular conditions. I’ve asked my doctors if they can help me find therapists who know how to help patients with conditions such as mine. Everyone seems “clueless”.

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Hi @suezq, Welcome to Connect. I see that you are a new member and have also posted in the discussion "Anyone been diagnosed with CIDP? It's very rare". You might be interested in the following discussion which I think is the kind of therapy you might be looking for.

> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Are you able to share a little more about your diagnosis and the treatments you have tried so far?

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@suezq Good afternoon,
How unfortunate that you have not been helped by the therapists you have seen. You have described your discomfort precisely and it matches the areas where I need help. I would like to recommend that you take a look at the following link. It explains the process of myofascial release therapy, MFR. I have been receiving this gentle and helpful treatment weekly for a couple of years now. It relieves my body discomfort especially in arms, wrists, and neck on the upper side and knees, ankles and feet on the lower side. I think all expert level MFR therapists are also PTs (physical therapists) or OTs (Occupational Therapists) or both. There is a link to the registry in the article. Good luck to you. Check back if you run into a puzzling statement or two. Be happy today…find the joy within you. Chris
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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@artscaping

@suezq Good afternoon,
How unfortunate that you have not been helped by the therapists you have seen. You have described your discomfort precisely and it matches the areas where I need help. I would like to recommend that you take a look at the following link. It explains the process of myofascial release therapy, MFR. I have been receiving this gentle and helpful treatment weekly for a couple of years now. It relieves my body discomfort especially in arms, wrists, and neck on the upper side and knees, ankles and feet on the lower side. I think all expert level MFR therapists are also PTs (physical therapists) or OTs (Occupational Therapists) or both. There is a link to the registry in the article. Good luck to you. Check back if you run into a puzzling statement or two. Be happy today…find the joy within you. Chris
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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Physical therapists have helped me in the early stages of my condition following treatment. Afterwards I went on to do more on my own than what they did. Occupational therapists, in general haven’t helped me (my hands), other than one who helped me early on with my shoulder muscles that had shortened & tightened after using a walker for a while.
My chiropractor used MFR on me for a lower back/hip issue. It helped me greatly with quick results.
I hadn’t heard of physical or occupational therapists using MFR techniques for neuropathy. One of my physical therapists would do something called “foot mobilization” with my feet. That was great. Many physical therapists, I research, aren’t familiar with “foot mobilization “.
I’ll check out the website you posted above, later. Thanks!

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@suezq

suezq: I have had physical & occupational therapy.
My neuropathy is in my feet, lower legs, hands & lower arms. The Occupational therapists, in particular don’t know how to help. In general the Physical & Occupational therapists are trained more for helping patients with broken bones, injuries, recovery from surgery, etc. They aren’t trained for working with patients with chronic neuromuscular conditions. I’ve asked my doctors if they can help me find therapists who know how to help patients with conditions such as mine. Everyone seems “clueless”.

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Hello!
What about those professionals that work in rehab residences. They help people who have had strokes and can't use their feet and legs. Perhaps they can help???
Ronnie

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@retiredteacher

@brendakaye Welcome to the group. My primary problem is Diabetes, but I was diagnosed only three years ago. I am 75 years old and was very healthy until that diagnosis. I do not take any meds for the diabetes—diet and exercise. Of late I have had a hard time with the soles of my feet. I feel as if I'm walking on shards of glass. It's very uncomfortable trying to do anything. Some days are worse than others. I diagnosed myself with neuropathy. I would not take any meds for that. Meds have too many side effects that cause other problems for me. I also have arthritis in my hands. They are always sore and swollen. I will ask about my feet and hands when I go to my endo appointment in several weeks. I understand how hard it is to go 24/7 with this kind of pain as do others on this forum. I have read the posts and most people have found little that really helps. I don't know what the answer is, but maybe my endo can shed some light. Do you notice the joints in your hands are swollen? If you warm your hands does that lessen the pain? Have you seen your doctor for your hands?

I wish I could tell you things will improve, and they might, but your doctor needs to know what's going on.
Carol @retiredteacher

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Thank you so much. I’m hoping you continue to find some relief. I think I will order the compression gloves. Also I want to tell you a friend gave me a jar of CBD/THC for the pain in my back caused by spinal stenosis. Will it didn’t help, but after reading several posts here, decided to try it on my hands and feet.WOW what a difference! I had tried one thing after another…meds, lidocaine cream, hot/cold packs. You name it. And my Pcp seemed at a loss. I had terrible burning and numbness in feet, and twitching that drove me crazy. Of course it was worse at night, and I had many sleepless nights. Then, my hands started in with the same symptoms and I was really flustered. So tried the CBD/THC balm at night before bed, and what a difference! The one I use is 175mg of CBD and 175mg of THC. I hope this helps you. As we all continue to share and find relief, may you have sunny days and happy thoughts.

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@brendakaye I have tried the creams you mentioned and no help. I have diabetes and have severe pain in the soles of my feet. I would like to try CBD/THC but I don't know what it is. Can I get it over the counter at a drug store or does it require a prescription? I am close to not being able to walk, so I desperately need help with something. Since this helped you, I'd like to try it. I'd appreciate knowing what it is and where I can get it.
Thanking you in advance.
Carol @retiredteacher

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Hi MicTim here! I found that a lotion works well for me and I have tried that all it seems, just trying to find some type of relief for my burning feet and now may the top of my hands. Here is a link for EXTRA STRENGTH "Neurofreezze" as it is made with the CBD/TCH "Cannabis". Go to the following: http//:www.michaelsamazingbotanicals.com, hopefully I did that tech link stuff was done correctly this time. just copy and paste into your web browsr.

I have not yet used the "EXTRA STRENGTH" yet, but I will be getting some next month. Thier regular Neurofreeze works very well for my Burning Soles of both of my Feet, to me it is its weight in gold!! I have found a few creams that work for 5 to 30 minutes or so, but not as long or as cold as that lotion.

I was told by Kate Grreen herself that it is not made for the public yet, but if you ask for it ? But I do not know about diff. state issues. They only charge me something like $3.00 for the shipping. I use the there regular Nerufreeze lotion at least 2 times per day and sometimes 5 or even 6 times per day as/if needed. Even when it works well, a few nights I have to hold my feet out of the blankets to get to sleep quicker, yet it is the best lotion that I have found. I have tried many CBD/TCH lotions and even used some sub-lingual types as well. The topical method works best for me as I can pour it on as much as I want. When taking THC/CBD orally "less is more". I do not use anything orally any more, I just use there topical lotions, as for me that is best.

From before: ""Of course it was worse at night, and I had many sleepless nights. Then, my hands started in with the same symptoms and I was really flustered. So tried the CBD/THC balm at night before bed, and what a difference!"" The same here as the PN has now started progressing to my hands which is very disheartening to me, as I have enough of other issues to deal with. Nothing better than the Golden years! LOL

Anyway, I hope this helps you and others out, as It hurts my heart to here some of these PN stories. I have asked the Lord many times for healing on this PN Issue and at least He helps me and gives me peace within for one day at a time. I am moving forward with the best that I can and what I have to work with. I just try to keep very busy mentally, listen to soft peaceful music and sometimes a movie which really helps me a lot!!

Have the best day as possible! MicTim

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@mictim, Good evening. I am interested in the CBD/THC balm that you described using with success as a nighttime medication. Is that balm what you refer to as Neuro-freeze? Unfortunately, I cannot find a balm on the website link you posted. So I tried Amazon and there is nothing under Michaels Amazing Botanicals or Neuro-freeze. Perhaps you could clarify. The link does not mention a balm. It is interesting that the owner makes these for friends and family. Actually, my very first CBD/THC balm was from a neighbors yard. It worked well for me then because that was all there was. I also noticed that there is nothing in the product category and it doesn't appear that you can make a purchase on the website although the site tells you to click on Shop.

It is important that we receive and share trustworthy information. My experience tells me that no cannabis products other than those containing no more than .03 THC can be sold online. There are federal laws prohibiting shipment of products with more than .03 THC across state lines. The cannabis industry is just emerging and is confusing to many. We need to be very careful that we purchase legally especially when we get a referral as positive as yours. Have a restful sleep. Chris

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I was getting the daily digests up until about a week ago, then they just stopped. Nothing has changed on my email and they're not going to other folders such as spam. Can someone check it out for me?

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@artscaping

@mictim, Good evening. I am interested in the CBD/THC balm that you described using with success as a nighttime medication. Is that balm what you refer to as Neuro-freeze? Unfortunately, I cannot find a balm on the website link you posted. So I tried Amazon and there is nothing under Michaels Amazing Botanicals or Neuro-freeze. Perhaps you could clarify. The link does not mention a balm. It is interesting that the owner makes these for friends and family. Actually, my very first CBD/THC balm was from a neighbors yard. It worked well for me then because that was all there was. I also noticed that there is nothing in the product category and it doesn't appear that you can make a purchase on the website although the site tells you to click on Shop.

It is important that we receive and share trustworthy information. My experience tells me that no cannabis products other than those containing no more than .03 THC can be sold online. There are federal laws prohibiting shipment of products with more than .03 THC across state lines. The cannabis industry is just emerging and is confusing to many. We need to be very careful that we purchase legally especially when we get a referral as positive as yours. Have a restful sleep. Chris

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Hi,

I think you need to send them an inquiry. Others have had the same issue in getting it. Just send them a request as they do make many different medical products.

I just talked to them and they are a manufacture of products sold worldwide. I think that they own several companies and they are having some issues with the demand, more natural products are not easy to make and something about packaging. When I was still working it was almost a small fortune to set up and automatic system of any kind. I do know that they do 3rd party testing.

The US laws are highly politically based FDA (big pharma controlled) (opinion) and not what is based on what is the best, which is very sad indeed. Banks take a big chunk out of us each and every day more and more is controlled and refined to the enth degree and the medical community has some very large issues! They seemed to be more concerned about rules regulation, HIPPA, legal issues, liabality and squeezing every dollar and maximize profits. Nicer facilities, fancy and faster cars, more staff, more equipment and less output and I my opinion sometimes poor advice as they are based on what I believe is the wrong foundation as it all changed in the early ~1900's to synthetic based drug formulation away from natural based.

I think people need to be less concerned about the state and federal laws unless you are dealing in something illegal and not paying taxes. Your intent should be to get something that works for your feet and you are not ingesting for recreational uses. All I wanted to do on this blog was to help someone else who was in pain and in great need. Before I began using Cannabis for sleep issues I looked into it in great depth and followed that emerging industry, as it was and still is a local issue as well. My young healthy looking son died from cancer smoking too much of the stuff which I still detest the smoking portion for recreation. Now for pain from Cancer smoke on ….. as it works!!!

As a natural plant based product it is wonderful for topical PN and if you take the stance that "less is more" it will work very well for other medical issues as well wither it be the CBD or the TCH. For medical uses, I would suggest not use it in excess orally or as a sub-lingually. Each one of us is different, so go slow if and when you ingest it. Again Go Slow …. Less is More!

In most European areas many mothers and grandmothers still go to there garden and pick some Opium pods and boil them down and make a syrup for use as a cold medication.That is very common example, just like we can grow our own Peppermint herbs for Tea to relax at night before bedtime. America is a great place but yet confused in some of the the simplest and strangest ways. People need to move on from the Nixon era and decriminalize Cannabis. Now the manufacturing of it should be controlled.

For an example I was on a trip in India before I retired and became very ill from Sinus Infection. The hotel called a doctor and sent me to him in a little open taxi kind of like a roof covered motorcycle cart. The doctor met me at the curbside and helped me up some steps to his office. No nurse or staff was there, he asked me several questions did a basic examination to assess what was the issue at hand.

He spent about 45 minutes with me gave me an injection to get me some quick relief as I was really down health wise, it worked well, unknown substance as I did not have the strength to ask much. Anyway he gave me 3 types of tablets weeks supply and a prescription to get filled at the local hospital then made sure that the taxi was called and helped me down the stairs and even helped me back into the taxi. I think the fee was less than $10 USD and I would expect that if I was a local Indian maybe even less. I have had the same experience in other countries as well.

Most us based physicians should really form a collective support group similarly based like the AMA. The name of their should be called the Collective Constipated Physicians of America CCPA. This of course is my personal opinion as our medical systems to me in many ways is going slowly nowhere. More and more pills that cause more problems and issues than they solve. If you can find a good communicative integrative physician who cares keep them (tell others) as they are becoming very rare!! Find a good physician or medical clinic that is based on helping and healing!

I looked at that botanical website and yes it looks like a working place holder and not a sales friendly engine based company. It was on Amazon for quite awhile and from what I have heard Amazon is not very friendly to work with and rather non-responsive and very demanding. Kate Green did not comment about Amazon but said in a few months Neuro Freeze cooling and heating would be there once again. Over the years I have emailed her several times. What really make any difference, is it just works well. She did say the the Extra Strength is only available online via request and not thru Amazon.

Thank you for your questions, you got page full in return. I hope the best for you and my friends, well it is time for my nappy! Everyone have a great day. MicTim

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@helennicola

thanks Chris, we will be visiting a son in Ca. in Nov. so we’ll have to wait til then I guess.

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@helennicola Good afternoon. On the website, you can see a list of all the locations in CA where P & B products are sold in that state. In what state do you reside? and one more question………Where in CA is your son living? Let me see what might be done. Be safe….from pain. Chris

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