Living with Neuropathy - Welcome to the group

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?

@sunny2

Thank you Rachel @rwinney for your reply. As in your case, my doctor wants me to start with 30mg of extended release Duloxetine and then later increase to 60mg.it sounds like you are getting relief with other drug combinations which is great. What are the combinations you are currently taking and did you feel that the Duloxetine helped at all before you started another regimen? Hope you are having a good day!

Jump to this post

3 years ago I began having chronic pain in my neck and shoulders along with daily headaches. After 6 months of troubleshooting with therapy, chiropractic, accupunture, holistic approaches, neurologist and spine surgeons I was referred to pain management. They did nerve blocks followed by occipital and cervical radio frequency ablations. Throughout this time I attempted to hold down my job which was a boat load of pressure with chronic daily pain. The first mention of Duloxetine was by my PCP because my anxiety and stress levels were through the roof! My frustration of not having a clear definition of what was wrong with me had me in tears daily (here's the loop we speak of). He also mentioned it was an off label use for pain. I tried the drug (first time) for one week and gave up on it. I could not function properly at work due to drowsiness/fogginess plus it was premeditated in my mind to be an anti-depressant which I was against, hard to accept for me. Within the next 2 years my body continued to experience burning pain and weakness that could not be diagnosed properly. The ablations were providing less relief each time. I went from Gabepentin to Lyrica and round again. I finally was diagnosed with chronic migraines but nothing else. EMG and nerve conduction studies were normal, as was basic blood work. Rheumatology ruled out fibromyalgia. My pain spread and evolved into a multitude of symptoms. (you can refer to my bio for a previous post on my symtoms if interested). I could no longer fight it anymore and finally consented to Duloxetine. I personally did not receive pain relief from it but believe it keeps my emotions and anxiety in check. Long story short…it took 2 1/2 years to be diagnosed with Small Fiber Poly Neuropathy via skin punch biopsy. My current protocol is Lyrica Controlled Release 165 mg 1x day with dinner (so I'm going into evening with mild drowziness), Duloxetine 60 mg 1x day at bedtime,
Norco 5-325mg (Hydrocodone/Acetamin)3-4 x day as needed and for the past 3 months 900mg of intraveneous lidocaine infusions 1x week. Infusion therapathy does not seem too well known or spoke of on this forum. It may be due to different levels of knowledge from Doctors or different preferences. Lidocaine infusions can not be safely given to everyone either. Personally they have given me new life for 3-4 days each week and the ability to walk in less pain or some days to walk period. I threw alot at you and am sorry, tend to get on a roll! I hope you find your comfort zone in treatment and continue to research options that make sense and work for you. This forum is great for wisdom and experience. I sincerely I wish I found it sooner. All the best to you in your journey.

REPLY
@sunny2

My name is Diane and I am very happy to have found this group. Even though I have been in the group just a few days I can see how members are caring and supportive. I was diagnosed with idiopathic peripheral neuropathy about 18 months ago but it has only been in the past couple weeks that the burning pain has increased substantially, especially in my feet and ankle areas. When I last saw my neurologist he gave me a prescription for Duloxetine. After reading about the drug and it’s possible side effects I decided not to take it but that was before the symptoms got worse. This may have been a previous topic of discussion but I am wondering if anyone who has tried this drug can comment on his or her experiences with it.

Jump to this post

@sunny2, Good evening. I may have found one study about the potential impact of Duloxetine use on osteoporosis. Take a look and see if it has value for more. Let me know yay or nay so I know if I am even on the right track.
https://www.healthcentral.com/article/secondary-causes-for-osteoporosis-part-ii-medications-that-cause-bone-loss
Have a restful sleep…..Chris

REPLY
@artscaping

@sunny2, Good evening. I may have found one study about the potential impact of Duloxetine use on osteoporosis. Take a look and see if it has value for more. Let me know yay or nay so I know if I am even on the right track.
https://www.healthcentral.com/article/secondary-causes-for-osteoporosis-part-ii-medications-that-cause-bone-loss
Have a restful sleep…..Chris

Jump to this post

@artscaping. Thanks very much for this. Especially interesting since I do have borderline osteoporosis. I see from reading through past postings that you get some relief with medical marijuana. I have been using it for about the last 6 to 7 weeks without any result. I am using a spray with a 1:1 ratio of CBD to THC. Each two spray dosage delivers 6 mg of CBD and 6 mg of THC. I started out very slowly and kept increasing the dose and then went back to the dispensary to talk to the pharmacist. She recommended trying 2 sprays every 4 hours and 3 sprays at night. Have been doing this for a little over a week with no change. I am going to go back and discuss getting a product with a lower ratio of THC and perhaps try that during the day and the 1:1 ratio spray at night. As others have said, I don’t like the high feeling from the THC. I am also going to see if I can also use a topical cannabis cream along with the sprays. Anyway I will persevere for awhile to see what happens.

REPLY
@rwinney

Hi Diane
Welcome! Happy to have you join the group. I began with 30mg of Duloxatine over a year ago and for me the toughest challenge was nausea and feeling tired. After a week I told my a Dr my worries and he said just give it another couple of weeks. I ate saltines, chewed mint gum and pepto tablets. Inevitably I got through the challenges but it took me a solid month. Eventually increased to 60mg and took in the evening to sleep off unwanted effects. I guess I was so desperate for the first step of help that I really stuck it out. Now that I receive other combinations of treatments for pain and I feel more in control mentally with my diagnosis, I often think of weaning off. Honestly though am concerned to do so in case it back fires and I feel the need to get back on and go through the readjustment process. Long term goal is always to reduce or replace unnecessary drugs…just don't know, how I will know??? Feel well today.
~Rachel

Jump to this post

@rwinney
Hi there,
I took 60 mg of Cymbalta too and my doctor tried to raise it to 90mg but I refused the increase. I rarely have any side effects from medication, the Anti-Inflammatory Tolectin, & Anticonvulsant Lyrica, being the exceptions. As far as Liver or Kidney damage I never had problems there either and I took a lot of medications (Nearly 400,000 pills.) Virtually all the medication I took had the potential to cause Liver or Kidney problems but they are still functioning like champs.
Do you usually suffer side effects on most prescriptions you take.
Health and happiness,
Jake

REPLY
@artscaping

@sunny2, Good evening. I may have found one study about the potential impact of Duloxetine use on osteoporosis. Take a look and see if it has value for more. Let me know yay or nay so I know if I am even on the right track.
https://www.healthcentral.com/article/secondary-causes-for-osteoporosis-part-ii-medications-that-cause-bone-loss
Have a restful sleep…..Chris

Jump to this post

@artscaping if I may, I have a couple further questions…it sounds like you use the medical marijuana while you are taking Cymbalta? I don’t know now where I got the idea that if I start taking the Cymbalta I should stop the marijuana. Also, was it fairly soon after starting the Cymbalta that you knew it was going to be beneficial for you?

REPLY
@jakedduck1

@rwinney
Hi there,
I took 60 mg of Cymbalta too and my doctor tried to raise it to 90mg but I refused the increase. I rarely have any side effects from medication, the Anti-Inflammatory Tolectin, & Anticonvulsant Lyrica, being the exceptions. As far as Liver or Kidney damage I never had problems there either and I took a lot of medications (Nearly 400,000 pills.) Virtually all the medication I took had the potential to cause Liver or Kidney problems but they are still functioning like champs.
Do you usually suffer side effects on most prescriptions you take.
Health and happiness,
Jake

Jump to this post

Hi Jake
I seem to get mild symptoms that I power through and deal with for the benefit of the medication. The one thing that bothers me the most is my memory. At 49 it alarms me when I blank on names, words and thoughts but I deal. As for liver….yes, big time long term concern. Do you have routine testing?

REPLY
@rwinney

Hi Jake
I seem to get mild symptoms that I power through and deal with for the benefit of the medication. The one thing that bothers me the most is my memory. At 49 it alarms me when I blank on names, words and thoughts but I deal. As for liver….yes, big time long term concern. Do you have routine testing?

Jump to this post

@rwinney
Howdy,
Yeah, I have a standing order for Liver & Kidney function tests every three months when I get my seizure meds checked. I can totally relate to a lousy memory. I have no memory of the first 15-17 years of my life and a decade here and there are gone as well. I don’t know if the 400,000 pills I’ve taken hurt my memory but they certainly haven’t helped it.
Sounds like we both have Lethologica. Anomic Aphesia

REPLY
@rwinney

Hi Jake
I seem to get mild symptoms that I power through and deal with for the benefit of the medication. The one thing that bothers me the most is my memory. At 49 it alarms me when I blank on names, words and thoughts but I deal. As for liver….yes, big time long term concern. Do you have routine testing?

Jump to this post

@rwinney
Howdy,
Yeah, I have a standing order for Liver & Kidney function tests every three months when I get my seizure meds checked. I can totally relate to a lousy memory. I have no memory of the first 15-17 years of my life and a decade here and there are gone as well. I don’t know if the 400,000 pills I’ve taken hurt my memory but they certainly haven’t helped it.
Sounds like we both have some degree of lethologica / Aphasia
Take care,
Jake

REPLY
@jakedduck1

@rwinney
Howdy,
Yeah, I have a standing order for Liver & Kidney function tests every three months when I get my seizure meds checked. I can totally relate to a lousy memory. I have no memory of the first 15-17 years of my life and a decade here and there are gone as well. I don’t know if the 400,000 pills I’ve taken hurt my memory but they certainly haven’t helped it.
Sounds like we both have some degree of lethologica / Aphasia
Take care,
Jake

Jump to this post

You sir have certainly paid your dues. I commend you. Hope your day is as pleasant as can be.
Rachel

REPLY
@sunny2

@artscaping if I may, I have a couple further questions…it sounds like you use the medical marijuana while you are taking Cymbalta? I don’t know now where I got the idea that if I start taking the Cymbalta I should stop the marijuana. Also, was it fairly soon after starting the Cymbalta that you knew it was going to be beneficial for you?

Jump to this post

@sunny2 My pcp told me that if I used any marijuana he would no longer prescribe morphine sulfate contin and Clonazepam. I'm not at all interested in stopping the Clonazepam in particular. My pain specialist, on the other hand, would be supportive of me giving marijuana products a try. Right now I'm just trying to do what I can to handle the pain.

Jim

REPLY
@jimhd

@sunny2 My pcp told me that if I used any marijuana he would no longer prescribe morphine sulfate contin and Clonazepam. I'm not at all interested in stopping the Clonazepam in particular. My pain specialist, on the other hand, would be supportive of me giving marijuana products a try. Right now I'm just trying to do what I can to handle the pain.

Jim

Jump to this post

@jimhd
Hi Jim
How does the Klonopin help you? Do you have spasms? I took a huge dose and it never helped me.
Just curious.
Jake

REPLY
@sunny2

@artscaping if I may, I have a couple further questions…it sounds like you use the medical marijuana while you are taking Cymbalta? I don’t know now where I got the idea that if I start taking the Cymbalta I should stop the marijuana. Also, was it fairly soon after starting the Cymbalta that you knew it was going to be beneficial for you?

Jump to this post

Good evening @sunny2, I just found your post…..we have a Count on Me Club composed of 7 homes along the river. Today was our day to host the annual event. What we do is help neighbors where there is a need. A sled dog musher had a knee replacement and a neighbor fed his 26 sled dogs. A tree fell down and blocked a path so neighbors grabbed their chain saws and took care of it. Great people, wonderful neighbors.

And now to your questions….Yes, I do use medical cannabis while taking Cymbalta. Basically, I have an agreement with my medical providers that I will take care of the daytime pain of small fiber neuropathy and myofascial pain syndrome if they keep me healthy with everything else. My medical cannabis includes only tinctures and a balm for the needle-like pain. I update my portal file with any product or dosage changes and include it on the written notes that I give to them at an appointment

As I recall @sunny2, my response to the Cymbalta was immediate (3-4 days) for me to see a marked improvement with the cognitive issues. That improvement stabilized within a few weeks. It took a little longer to let go of the anxiety. I increased my mindful meditation practice to stay out of the anxiety bucket. I chose as my "goal", to let go of making judgments. And today, I tested it again at the event…I did not get anxious about anything and I did not judge.

If you have further questions…..please post them for me. May you find relief from suffering. Chris

REPLY
@sunny2

@artscaping. Thanks very much for this. Especially interesting since I do have borderline osteoporosis. I see from reading through past postings that you get some relief with medical marijuana. I have been using it for about the last 6 to 7 weeks without any result. I am using a spray with a 1:1 ratio of CBD to THC. Each two spray dosage delivers 6 mg of CBD and 6 mg of THC. I started out very slowly and kept increasing the dose and then went back to the dispensary to talk to the pharmacist. She recommended trying 2 sprays every 4 hours and 3 sprays at night. Have been doing this for a little over a week with no change. I am going to go back and discuss getting a product with a lower ratio of THC and perhaps try that during the day and the 1:1 ratio spray at night. As others have said, I don’t like the high feeling from the THC. I am also going to see if I can also use a topical cannabis cream along with the sprays. Anyway I will persevere for awhile to see what happens.

Jump to this post

Hello, again @sunny2, Nice to see a post from you again. I wish I had great answers. Let's start with "yes" I use medical cannabis every day. It is my total pain control choice. May I ask about the spray? Is this a common delivery device? You say you have not felt any relief from your pain. And If I read this correctly you are going to discuss your lack of success with your pharmacist.

I have only used the spray once when I was traveling early in my attack on pain so I am not the expert here. Do you spray it under your tongue where that porous membrane disperses the droplets without running them through your digestive system? Tinctures from a reputable company known for its consistent quality are my cannabis choice. My thinking is that the droplets from the spray do not equate to a half dropper of a tincture. What do you think?

The topicals are my "lifesaver" Without them, I am known to start rubbing my hands together until it drives everyone crazy. Once again the quality is important. My resource said that with topicals you choose a dosage ratio for the pain. 3:1 CBD/THC for chronic muscular pain. 1:3 CBD/THC for more acute pain and neuropathy. Let me know of question or concerns.

May you have a restful sleep. Chris

REPLY
@artscaping

Hello, again @sunny2, Nice to see a post from you again. I wish I had great answers. Let's start with "yes" I use medical cannabis every day. It is my total pain control choice. May I ask about the spray? Is this a common delivery device? You say you have not felt any relief from your pain. And If I read this correctly you are going to discuss your lack of success with your pharmacist.

I have only used the spray once when I was traveling early in my attack on pain so I am not the expert here. Do you spray it under your tongue where that porous membrane disperses the droplets without running them through your digestive system? Tinctures from a reputable company known for its consistent quality are my cannabis choice. My thinking is that the droplets from the spray do not equate to a half dropper of a tincture. What do you think?

The topicals are my "lifesaver" Without them, I am known to start rubbing my hands together until it drives everyone crazy. Once again the quality is important. My resource said that with topicals you choose a dosage ratio for the pain. 3:1 CBD/THC for chronic muscular pain. 1:3 CBD/THC for more acute pain and neuropathy. Let me know of question or concerns.

May you have a restful sleep. Chris

Jump to this post

Hi Chris, you probably mentioned your “reputable” source in a past post but could you please tell us again which online source you use? I am going to Ca. in November and plan to purchase some to bring home. Thanks, Helen

REPLY
@artscaping

Hello, again @sunny2, Nice to see a post from you again. I wish I had great answers. Let's start with "yes" I use medical cannabis every day. It is my total pain control choice. May I ask about the spray? Is this a common delivery device? You say you have not felt any relief from your pain. And If I read this correctly you are going to discuss your lack of success with your pharmacist.

I have only used the spray once when I was traveling early in my attack on pain so I am not the expert here. Do you spray it under your tongue where that porous membrane disperses the droplets without running them through your digestive system? Tinctures from a reputable company known for its consistent quality are my cannabis choice. My thinking is that the droplets from the spray do not equate to a half dropper of a tincture. What do you think?

The topicals are my "lifesaver" Without them, I am known to start rubbing my hands together until it drives everyone crazy. Once again the quality is important. My resource said that with topicals you choose a dosage ratio for the pain. 3:1 CBD/THC for chronic muscular pain. 1:3 CBD/THC for more acute pain and neuropathy. Let me know of question or concerns.

May you have a restful sleep. Chris

Jump to this post

Hello @artscaping. The Count on Me Club is a wonderful idea. How fortunate you are to be surrounded with such caring neighbors. Thank you for your response. I have an appointment with the pharmacist at the marijuana dispensary on Friday to discuss other treatment options and the information you provided on what works for you will help me when I go for the consultation. I have only used the spray and it is sprayed under the tongue. I think you are correct that it may be more difficult to monitor how much I am actually getting from the spray. When I talk to the pharmacist I will ask about using a tincture and also inquire about using a topical treatment as well (which I have never tried). I remain hopeful that I will find a combination that will help to ease the discomfort. You are a role model as to what can be achieved.

REPLY
Please login or register to post a reply.