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?

Thank you Chris, I live in NC, my son is in LA, of which P&B has already sent me the locations which their products are available; unfortunately we have to wait until Nov. when we visit to purchase something.

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@helennicola, Good evening. It sounds like you need to connect with someone in LA or someone planning to visit there from your hometown so that you can receive it sooner. Be safe and well tonight. Chris

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Hi Chris, I don’t want to ask my son to mail me anything as I think it would still be illegal and although I would be willing to chance it I don’t want him to.

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Hi. I have my medical marijuana card. I live in Maryland and I can get the salve for pain and I also use the CBD/THC oil 10:1. I really don't experience much pain relief ingesting. This is probably because I am not consistent. I am trying. I want to tell you is that I have peripheral neuropathy and whether the severe pain on the top of my left foot and toes is from the neuropathy or other issues they are looking into I do know that taking the oil and using the dropper to "oil up "the top of my foot works wonderful. I put it on the painful area and rub it lightly and within 15 minutes I feel relief. I will not say I am pain free throughout my body, but the top of my foot feels much better. I like it better than the ointment because my foot and toes are so sensitive that rubbing the ointment in hurt me. So if anyone has a medical marijuana card you might want to try this. If not you can try the CBD oil you can buy on line or health food store as that may also work. All the dispensaries carry products that are similar in what they do, but are sod by different companies. I don't think California is the only State that sells relief. While on the subject of neuropathy will someone please explain what I can expect. I have the numbness (bad) in both my legs and severe pain and ache I lose my balance easily. I was diagnosed only 3 months ago after failing the nerve conduction test. I knew I had it over a year ago. My husband had it. He was a diabetic. He died from cancer on Jan. 7, 2018 due to cancer. I do not have diabetes. After his death when I went to the doctor and told her how I was feeling and the difficulty I was having walking and pain in my legs I was told it was from my emotion due to grief. When my foot swelled so bad and the pain out of control she started looking into it. We are now at the what is going on. Autoimmune disease is a possibility as ANA blood test was positive, spine possibly compressed by a bone spur (MRI on Monday) veins are bad but was told that is not causing this lymphodema was diagnosed until CAT scan showed no enlarged lymph nodes. Next visit is to a rheumatoid doctor All I know is I hurt and it is very difficult to get around. My fear is being wheel chair bound. I hope some of my input will help someone and someone's input will help me.

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@summertime4

Hi. I have my medical marijuana card. I live in Maryland and I can get the salve for pain and I also use the CBD/THC oil 10:1. I really don't experience much pain relief ingesting. This is probably because I am not consistent. I am trying. I want to tell you is that I have peripheral neuropathy and whether the severe pain on the top of my left foot and toes is from the neuropathy or other issues they are looking into I do know that taking the oil and using the dropper to "oil up "the top of my foot works wonderful. I put it on the painful area and rub it lightly and within 15 minutes I feel relief. I will not say I am pain free throughout my body, but the top of my foot feels much better. I like it better than the ointment because my foot and toes are so sensitive that rubbing the ointment in hurt me. So if anyone has a medical marijuana card you might want to try this. If not you can try the CBD oil you can buy on line or health food store as that may also work. All the dispensaries carry products that are similar in what they do, but are sod by different companies. I don't think California is the only State that sells relief. While on the subject of neuropathy will someone please explain what I can expect. I have the numbness (bad) in both my legs and severe pain and ache I lose my balance easily. I was diagnosed only 3 months ago after failing the nerve conduction test. I knew I had it over a year ago. My husband had it. He was a diabetic. He died from cancer on Jan. 7, 2018 due to cancer. I do not have diabetes. After his death when I went to the doctor and told her how I was feeling and the difficulty I was having walking and pain in my legs I was told it was from my emotion due to grief. When my foot swelled so bad and the pain out of control she started looking into it. We are now at the what is going on. Autoimmune disease is a possibility as ANA blood test was positive, spine possibly compressed by a bone spur (MRI on Monday) veins are bad but was told that is not causing this lymphodema was diagnosed until CAT scan showed no enlarged lymph nodes. Next visit is to a rheumatoid doctor All I know is I hurt and it is very difficult to get around. My fear is being wheel chair bound. I hope some of my input will help someone and someone's input will help me.

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Hi @summertime4, I'm not sure any of us members are able to tell you what to expect – most of us not having medical backgrounds or training. It does sound like you are battling multiple issues. I also have lymphedema and swelling – mostly in my right leg and ankle for which I wear compression socks. Hopefully your next visit to a rheumatologist will provide a diagnosis and treatment to help the pain and aches. I have polymyalgia rheumatica (PMR) which is currently in remission but when it's active it plain hurts all over and is very difficult to walk or do any kind of activities. The good news is there are some treatments that will provide relief if that's what is diagnosed on your next visit.

Here are some balance exercises on the Mayo Clinic website that may help you.
https://www.mayoclinic.org/healthy-lifestyle/fitness/multimedia/balance-exercises/sls-20076853?s=2

Thank you for sharing your experience here. Can you give us an update after your visit to the rheumatologist?

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@waltermc

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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Hi @waltermc, I just checked your account and you should be getting the daily digest. As you said, nothing has changed in your settings. If you do not receive a daily digest tomorrow morning, please send me an email using this form and we'll get it straightened out https://connect.mayoclinic.org/contact-a-community-moderator/

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@johnbishop

Hi @summertime4, I'm not sure any of us members are able to tell you what to expect – most of us not having medical backgrounds or training. It does sound like you are battling multiple issues. I also have lymphedema and swelling – mostly in my right leg and ankle for which I wear compression socks. Hopefully your next visit to a rheumatologist will provide a diagnosis and treatment to help the pain and aches. I have polymyalgia rheumatica (PMR) which is currently in remission but when it's active it plain hurts all over and is very difficult to walk or do any kind of activities. The good news is there are some treatments that will provide relief if that's what is diagnosed on your next visit.

Here are some balance exercises on the Mayo Clinic website that may help you.
https://www.mayoclinic.org/healthy-lifestyle/fitness/multimedia/balance-exercises/sls-20076853?s=2

Thank you for sharing your experience here. Can you give us an update after your visit to the rheumatologist?

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I sure will. I don't see the rheumatologist until Aug.6. I think you also asked me to update you on the results of the CAT scan I had done to check my lymph nodes as I was told I had lymphedema but had not had cancer. Well the CAT scan did not show involvement of the lymph nodes so it is edema, but lymph nodes are no blocking the fluid. Now to find out what is. They are now considering a nerve in the spine. Lots of osteoarthritis there.

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@summertime4

Hi. I have my medical marijuana card. I live in Maryland and I can get the salve for pain and I also use the CBD/THC oil 10:1. I really don't experience much pain relief ingesting. This is probably because I am not consistent. I am trying. I want to tell you is that I have peripheral neuropathy and whether the severe pain on the top of my left foot and toes is from the neuropathy or other issues they are looking into I do know that taking the oil and using the dropper to "oil up "the top of my foot works wonderful. I put it on the painful area and rub it lightly and within 15 minutes I feel relief. I will not say I am pain free throughout my body, but the top of my foot feels much better. I like it better than the ointment because my foot and toes are so sensitive that rubbing the ointment in hurt me. So if anyone has a medical marijuana card you might want to try this. If not you can try the CBD oil you can buy on line or health food store as that may also work. All the dispensaries carry products that are similar in what they do, but are sod by different companies. I don't think California is the only State that sells relief. While on the subject of neuropathy will someone please explain what I can expect. I have the numbness (bad) in both my legs and severe pain and ache I lose my balance easily. I was diagnosed only 3 months ago after failing the nerve conduction test. I knew I had it over a year ago. My husband had it. He was a diabetic. He died from cancer on Jan. 7, 2018 due to cancer. I do not have diabetes. After his death when I went to the doctor and told her how I was feeling and the difficulty I was having walking and pain in my legs I was told it was from my emotion due to grief. When my foot swelled so bad and the pain out of control she started looking into it. We are now at the what is going on. Autoimmune disease is a possibility as ANA blood test was positive, spine possibly compressed by a bone spur (MRI on Monday) veins are bad but was told that is not causing this lymphodema was diagnosed until CAT scan showed no enlarged lymph nodes. Next visit is to a rheumatoid doctor All I know is I hurt and it is very difficult to get around. My fear is being wheel chair bound. I hope some of my input will help someone and someone's input will help me.

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Hi @summertime4, perhaps a home care agency in your area can help with your lymphedema. I know that some home care therapists are certified on lymphedema. The agency needs an order from your rheumatologist for home care therapy to admit you to their services, The therapist will work with your doctor for orders. They can also help you get fitted for the right sleeve to remove the fluid. You should give it a try and remember it is the patient’s choice with which agency to sign up for services not the doctor. The doctor can assist you but it’s your right to choose. Of course, it all depends on your medical insurance plan but take advantage if you have Medicare as a primary insurance it is at no cost to you for the service.

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@grandmar

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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Are you referring to Physical & Occupational therapists like I was referring to? Those are the types of therapists I’ve gone to. Physical therapy was helpful & I went on to do more (than what they did) by exercising on my own at the Y. The Occupational therapists have been the most disappointing. As I stated, they only know how to help people recovering from, for example, an injury or surgery (injured bones). They’re not trained in providing help for chronic neuromuscular conditions.

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@avmcbellar

Hi @summertime4, perhaps a home care agency in your area can help with your lymphedema. I know that some home care therapists are certified on lymphedema. The agency needs an order from your rheumatologist for home care therapy to admit you to their services, The therapist will work with your doctor for orders. They can also help you get fitted for the right sleeve to remove the fluid. You should give it a try and remember it is the patient’s choice with which agency to sign up for services not the doctor. The doctor can assist you but it’s your right to choose. Of course, it all depends on your medical insurance plan but take advantage if you have Medicare as a primary insurance it is at no cost to you for the service.

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Thank you for this information. I did not know this. Someone was to come out and fit me with a sleeve for my leg. Didn't happen and now I just want them to figure out what is going on.

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@mictim

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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@artscaping I don't know how I missed this information from you but completely agree with you about our healthcare in the USA it leave a lot to be desired that is why Integrative medicine is on the uprise in my opinion. I use the cdb balm I found one at Sprouts its just a cream ,little tube but works for me. There are balms on different sites but for me I get headaches from THC so just stick with Hemp cannabis. We are all different . Liked your post Have a good day

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@summertime4

I sure will. I don't see the rheumatologist until Aug.6. I think you also asked me to update you on the results of the CAT scan I had done to check my lymph nodes as I was told I had lymphedema but had not had cancer. Well the CAT scan did not show involvement of the lymph nodes so it is edema, but lymph nodes are no blocking the fluid. Now to find out what is. They are now considering a nerve in the spine. Lots of osteoarthritis there.

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Finding out what is going on will determine the treatment. Hopefully you will find out more through your rheumatologist. You can ask any doctor you see to provide an order for home care for you. Since that doctor will be the one giving the orders and consulting with all the disciplines(i.e. nurses, physical and/or occupational therapists) it makes sense for the doctor to know what is going on in order to be in charge of the home care you receive. If you need any assistance in guidance let me know. For years I worked in that industry.

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