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Moderator

Living with Neuropathy - Welcome to the group

Posted by Colleen Young, Connect Director @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?

Interested in more discussions like this? Go to the Neuropathy Support Group.

Parus | @parus | Oct 23, 2017
In reply to @parus "@teacup Lying down is also my worst time. I have nearly worn hole in my sheets..." + (show)
@parus

@teacup Lying down is also my worst time. I have nearly worn hole in my sheets from constant moving.

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Lyrica, Savella and Gabapentin turned me into a mega female canine...I was totally unaware of my behavior. Being a solitary person and rarely speaking w/ anyone no one else noticed. One of the employees at the pharmacy did notice and they stapled the severe, rare side effects of the med Gabapentin with my name at the top and even spelled my name wrong. Arrived home threw it on the counter grumbling about how they could not even spell my name right-then I started reading the list. I was horrified!!! Stopped taking the Gabby that day. Also realized that my TV was not talking to me as well. One of the hazards of living alone. My social life is the grocery store-thankful for those whom did notice I was not my usual smiling, singing self.
Some meds can drastically change a person's personality. Comical to tell about, but not funny at the time. Once that had cleared my system I then remembered-thankfully I was not around many people. Doctor's thought it was my age...numnuts as some of them can be!!! I could have been locked up some where! They even knew I was taking this med. Want to know about a med ask a pharmacist as this is their area of expertise...
@ujeeniack Not wanting to frighten you as all people do not have such extreme reactions to these meds. Be sure someone knows you are taking the Lyrica and to notice any changes in your behavior. Hope it does help you.

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venki | @venki | Oct 23, 2017
In reply to @parus "@teacup Lying down is also my worst time. I have nearly worn hole in my sheets..." + (show)
@parus

@teacup Lying down is also my worst time. I have nearly worn hole in my sheets from constant moving.

Jump to this post

I'm suffering from Ulnar Neuropathy & Small vessel Brain disease. For the past few days my body rests but brain works. Taking Clonazepam & Elesert which makes me drowsy. Changes in behaviour & personality. Talking during sleep.Which medicine will work to cure my brain changes. Painful walking. Both leg & hand pain.

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Parus | @parus | Oct 23, 2017

Good idea to talk to pharmacist or doctor. Clonazepam does not work well for all people. May need a change in anti anxiety med. The aforementioned med did not work for me. We are not all wired the same. I live alone so oft do not notice personality/mood changes.

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Mentor
John, Volunteer Mentor | @johnbishop | Oct 23, 2017
In reply to @parus "@teacup Lying down is also my worst time. I have nearly worn hole in my sheets..." + (show)
@parus

@teacup Lying down is also my worst time. I have nearly worn hole in my sheets from constant moving.

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Hi Jim (@jimhd) - I bought a bunch of low ankle type socks that are as large as I could find and I wear them when I go to bed. My feet always seem to be cold. I sometimes use magnesium lotion on the feet just as a moisturizer. I probably should do it on a regular basis because it helps to keep the skin hydrated and a lot of those little tiny nerves/sensors are directly under the skin ☺ Mostly I wear the socks to prevent accidentally wounding myself with my toenails when I haven't trimmed them for awhile. I have a habit of rubbing my feet together at night without even knowing that I do it. I hate tight fitting socks. In the winter time if it's really cold I would double up on socks - short pair topped with a calf high loose fitting sock.

John

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Mentor
Jim, Volunteer Mentor | @jimhd | Oct 23, 2017
In reply to @parus "@teacup Lying down is also my worst time. I have nearly worn hole in my sheets..." + (show)
@parus

@teacup Lying down is also my worst time. I have nearly worn hole in my sheets from constant moving.

Jump to this post

@venki - it's surely frustrating to see things happening to ourselves and not know what to do.

What kinds of doctors are you seeing? They're the ones to direct your questions to. If they minimize your problems, ask to be referred to a doctor who specializes in treating your problems.

Jim

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teacup | @teacup | Oct 23, 2017
In reply to @teacup "Would like to know how I can continue to live with the extreme Pain attacks of..." + (show)
@teacup

Would like to know how I can continue to live with the extreme Pain attacks of my neuropathy, worst time is when I lay down, what meds do I need?

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Diagnosed with PH in 2003 - by a neurologist. Have seen 4 of the professionals now...am' working with the best yet. However, pretty much the regiment right now is; Gabapentin. Along with PH I have been having bouts with restless leg syndrome. Painful and disruptive to sleep to say the very least. Broke my leg - point is with that is I was prescribed oxycodone, seems to take the pain down, but not out, but, hey I'll take a ayuthing that at least does that much....

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venki | @venki | Oct 24, 2017
In reply to @parus "@teacup Lying down is also my worst time. I have nearly worn hole in my sheets..." + (show)
@parus

@teacup Lying down is also my worst time. I have nearly worn hole in my sheets from constant moving.

Jump to this post

I have seen many neurologists who have not taken anything serious. MY CSVD & left hand and leg swelling has not receded despite several medicines. They have prescribed Ecosprin, the Blood thinner, and Lipitab. PEG SR. For sleep disorder Im taking Elesert 100 & Clonam 0.5 which makes me sleepy during day time. None of the Neurologists give importance to Brain shrinkage as they tell that it is due to age. I am only 54 but the shrinkage is high. No reason is given for that. Tremors in right hand and anxiety disorder becomes anserless. What other option for me?

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steeldove | @steeldove | Oct 24, 2017
In reply to @mfobrien36 "Been there ... many times. I also have had some luck with using Vicks or Bengay..." + (show)
@mfobrien36

Been there ... many times. I also have had some luck with using Vicks or Bengay - don't like the smell but when really hurting, it helps. I also sleep on my sides and with the occasional help from a very comfortable recliner - can accumulate sleep. My feet are better in the morning as by later in the day, ankles (and feet) begin to swell so I try to hit the bedroom before that becomes too swollen. You'd think with all this information available, someone could come up with a "silver bullet" that works well without causing more health problems.

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Someone is working on finding answers and bringing knowledge to the medical community: Anne Louise Oaklander MD, PhD

Dr. Anne Louise Oaklander’s clinical research on neuropathic pain has been presented in teaching lectures and presentations throughout the United States, and internationally.
Read more here: http://www.massgeneral.org/neurology/researcher_profiles/oaklander_annelouise.aspx

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Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 25, 2017
In reply to @mfobrien36 "Been there ... many times. I also have had some luck with using Vicks or Bengay..." + (show)
@mfobrien36

Been there ... many times. I also have had some luck with using Vicks or Bengay - don't like the smell but when really hurting, it helps. I also sleep on my sides and with the occasional help from a very comfortable recliner - can accumulate sleep. My feet are better in the morning as by later in the day, ankles (and feet) begin to swell so I try to hit the bedroom before that becomes too swollen. You'd think with all this information available, someone could come up with a "silver bullet" that works well without causing more health problems.

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Hi @steeldove,
You'll notice that I inserted the link to Dr. Oaklander's web page, replacing the text you copied from the website. It is preferred to link to the original source when it is available online rather than copying and pasting. This allows people to see who authored the information and respects copyright.
Colleen

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Mentor
Jim, Volunteer Mentor | @jimhd | Oct 25, 2017
In reply to @parus "@teacup Lying down is also my worst time. I have nearly worn hole in my sheets..." + (show)
@parus

@teacup Lying down is also my worst time. I have nearly worn hole in my sheets from constant moving.

Jump to this post

I'm being referred to a specialist who is both a neurologist and a head doctor. The neurologist I see has run a bunch of tests and referred me to various specialist - ENT, speech pathologist (for tongue and swallowing problems, a hematologist, a urologist and a surgeon who implanted a spinal cord stimulator. Lots of tests, leg nerve biopsies, audio evoke test, blood draws, nerve conduction study and others that don't leap to my mind. I always ask questions about why, what exactly they see and think, what's next, what options I have, what possible testing can be done to get a more specific idea of what is being affected by neuropathy. I keep adding things to the list.

Have you seen other specialists? I'm probably going to see a podiatrist. I want to know more about what the audio evoke test means. I'm not diabetic, so at least I don't have that to worry about. It seems as though one thing leads to another.

I can't say it strongly enough - ask lots of questions, tell the doctor if you disagree with them and ask to be referred to other specialists. I have problems with memory, so when I think of a question, I put it in Evernote on my phone. I also do a ton of research about my symptoms, about medications and about possible treatments. I like to be informed so I can speak knowledgeably with the doctor. Maybe I'm wrong, but I want to impress the doctor mainly so I don't get blown off. I've told my pcp and neurologists all about what's going on in my body, but lately, I've been getting noticed more, and the doctors have tried harder to help me find answers. I believe that my being as well informed as I can be has been a factor. And I've gotten pushier, a word auto correct doesn't recognize. That goes totally against my nature. I'm sorry you've had little help from neurologists. Is it possible that there's a specialist who works more specifically with your symptoms? Is it possible to see a neurologist at Mayo or a comparable facility?

Keep seeking answers that satisfy you.

Jim

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