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?

@jeffrapp

I used to take gabapentin in fairly large amounts. I never really experienced any side effects, but then I have always been an expensive date. I also never knew if it was doing anything, as my symptoms progressed while I was on it. Of course, they may have progressed more it I weren't on it.
I switched to Lyrica just to try it. There doesn't seem to be any difference.
I find that my feet feel much better in warm weather, which it is now. There are so many variables as to how I feel, including emotional ones. It makes it very hard to decide what is working or not, as you probably know by now.
I don't get the sense that that either of them work right away. In my case, if they work at all, it seems to be a cumulative effect over many days. You may have a different result.
Keep experimenting.

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@jeffrapp Neurologist in St. Louis told me that Gabapentin and Lyrica work in the same way; only Cymbalta works in a different way.

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Both poison!

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@jimbotch

How high can you safely go in daily amount of Lyrica?

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I'm on 165 mg 1x day. I tolerate it well. Dont want to go higher as of now. Had been on regular Lyrica over a year or two ago then off it to test the waters…that backfired! My Neuro decided to advance me right to the CR form. Much easier with once a day. It is expensive and may be difficult to get coverage however, there are co-pays card savings opportunities through the Lyrica website. Your pharmacist should also be able to assist in this area.

Screenshot_20190815-184404

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@steeldove

@jeffrapp Neurologist in St. Louis told me that Gabapentin and Lyrica work in the same way; only Cymbalta works in a different way.

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Gabapentin and neurontin are very similar medications. One may have less side effects or work better than the other for some people. Cymbalta is a completely different medication, as are many others that are used to treat PN. To date, none of them work very well for most people, which explains why so many neurologists and other doctors are frustrated with this disease, as are the patients, of course.
The comment that both are poisons is simplistic and unhelpful. Almost all medications are poisons to some extent. The trick is to take enough to gain some benefit, while not suffering too many side effects.
If this strategy is not something you are willing to engage in, then don't go to see doctors, particularly for problems like PN, which is not yet well understood as to cause, treatment, etc.
Most people are doing their best with a very difficult situation.

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You hit the nail on the head! As I mentioned, for me personally, and from what I've read, Small Fiber PN requires a multidisciplinary approach. As we all can agree, each one of us is different. As much as Lyrica helps my stabbing, electrical zaps and tingling, it does nothing for tenderness, muscle tightness/cramps, burning, aching, throbbing etc…Keep experimenting is great advice!

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@jeffrapp

Gabapentin and neurontin are very similar medications. One may have less side effects or work better than the other for some people. Cymbalta is a completely different medication, as are many others that are used to treat PN. To date, none of them work very well for most people, which explains why so many neurologists and other doctors are frustrated with this disease, as are the patients, of course.
The comment that both are poisons is simplistic and unhelpful. Almost all medications are poisons to some extent. The trick is to take enough to gain some benefit, while not suffering too many side effects.
If this strategy is not something you are willing to engage in, then don't go to see doctors, particularly for problems like PN, which is not yet well understood as to cause, treatment, etc.
Most people are doing their best with a very difficult situation.

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Well said.

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@wilcy

Both poison!

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@wilcy just jumped on and saw your post What's poison and why? Really interested. I do not want to take anything that will harm me.

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My colon surgeon said all prescriptions are poisonous! Go to Pubmed. Govt

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@wilcy

My colon surgeon said all prescriptions are poisonous! Go to Pubmed. Govt

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Before this poison issue gets too far, I'd like to try to clarify.
All medications, and many other things, affect the way the body is working. One takes them because, presumably, the body (or parts of it) are not working correctly. The patient takes them, hopefully well informed, in order to fight DISease (emphasis is mine). This is the benefit. The cost is the possibility of adverse reactions, and unpleasant side effects (not to mention having to go to the doctor and possibly spend a lot of money).
As an illustration, imagine a young infant whose body is functioning perfectly. Then, it gets pneumonia. The doctor prescribes an antibiotic, which kills the bacteria and allows the lungs to heal. Unfortunately, the child develops diarrhea as a result of the antibiotic.
Fortunately, the diarrhea stops after the antibiotic is finished. The child goes back to being perfect.
One could say that the child was poisoned by the antibiotic, but most would agree that it was worth it given the favorable outcome, and the potential for a bad result from the pneumonia (like death) if treatment wasn't given.
It's the same with every medication. Some, used for very serious problems, or problems that are not well understood (like PN) may be more "poisonous" and less beneficial.
Remember, many people purposely put poisons into their bodies, which have no real benefit (other than maybe feeling good), like alcohol,
tobacco, illegal drugs, massive amounts of sugar, etc.

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@summertime4

@wilcy just jumped on and saw your post What's poison and why? Really interested. I do not want to take anything that will harm me.

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Hello, had rectal cancer 5 years ago! During recovery, spent lot of time on my back recovering and doing research on healing! Started taking lots of supplements such as d3, magnesium, Curcumin, fish oil! Anyway went to ER 2years after diagnosis! Think it was for PE in both lungs! While waiting in exam , a colon surgeon walks up and says, you have been through a lot and probably know more than most doctors about rectal cancer! I guess he saw my chart! Failed reconnection, scar tissue, prolapsed stoma etc! Could go on! Told him I thought supplements saved my life! He then said, you know prescriptions are poison! My primary doctor said the same! I don’t take blood thinners or flu shots etc! Realize I will catch heat from this! Good luck!

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@wilcy

Hello, had rectal cancer 5 years ago! During recovery, spent lot of time on my back recovering and doing research on healing! Started taking lots of supplements such as d3, magnesium, Curcumin, fish oil! Anyway went to ER 2years after diagnosis! Think it was for PE in both lungs! While waiting in exam , a colon surgeon walks up and says, you have been through a lot and probably know more than most doctors about rectal cancer! I guess he saw my chart! Failed reconnection, scar tissue, prolapsed stoma etc! Could go on! Told him I thought supplements saved my life! He then said, you know prescriptions are poison! My primary doctor said the same! I don’t take blood thinners or flu shots etc! Realize I will catch heat from this! Good luck!

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I agree with you! Finally off all meds (methadone, Lyrica, Cymbalta, Trilipix, Restoril to name a few) since December 2018. Have my medical marijuana card and nothing else other than supplements. Best decision ever!!!

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It is always great when someone finds something that works for them with their health issues; I am also a strong believer of natural methods such as supplements, exercise, meditation etc. However, I do believe that drugs serve a purpose when nothing else works; even a “placebo effect” can be beneficial. Marijuana is also a drug, not without its own health risks and side effects, but probably more enjoyable temporarily! So one can “pick their own poison” as they say, and hope for the best.

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@helennicola

It is always great when someone finds something that works for them with their health issues; I am also a strong believer of natural methods such as supplements, exercise, meditation etc. However, I do believe that drugs serve a purpose when nothing else works; even a “placebo effect” can be beneficial. Marijuana is also a drug, not without its own health risks and side effects, but probably more enjoyable temporarily! So one can “pick their own poison” as they say, and hope for the best.

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Got my medical card! Not helping with neuropathy! Tried several strands and nothing! Guess will try edibles! Not helping with back pain either!

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@wilcy

Got my medical card! Not helping with neuropathy! Tried several strands and nothing! Guess will try edibles! Not helping with back pain either!

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@wilcy
None of the Marijuana or CBD helped my brother.
I refuse to take it.
Jake

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@wilcy

Hello, had rectal cancer 5 years ago! During recovery, spent lot of time on my back recovering and doing research on healing! Started taking lots of supplements such as d3, magnesium, Curcumin, fish oil! Anyway went to ER 2years after diagnosis! Think it was for PE in both lungs! While waiting in exam , a colon surgeon walks up and says, you have been through a lot and probably know more than most doctors about rectal cancer! I guess he saw my chart! Failed reconnection, scar tissue, prolapsed stoma etc! Could go on! Told him I thought supplements saved my life! He then said, you know prescriptions are poison! My primary doctor said the same! I don’t take blood thinners or flu shots etc! Realize I will catch heat from this! Good luck!

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I agree. Some of my symptoms came on strong about three weeks after I was immunized for the flu. After that it took months to get a diagnosis of PN. I had to keep pushing my GP. My PN is small fiber idiopathic according to my neurologist. I can’t help but wonder though…

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