Update and medication S/E
 

Just to re-cap....I was diagnosed with mixed axonal and demyelinating peripheral polyneuropathy on my 50th birthday (although I was having symptoms as far back as 1996 or 14 years ago.) I was initially put on Neurontin 300 mg at bedtime. Around the first part of April 2010, I started to experience severe burning on the palms of my hands and in my fingers. This was unlike any burning I have ever experienced. Just air circulating would send me into a frenzy. I could not stand to touch anything or have anything touch my hands. I went to my GP because my neuro is 150 miles away. He gave me a "burst" of steroids, started me on Cymbalta 30mg to start and now 60mg, and increased the neurontin to 600 mg at bedtime. After about 7 days, the burning started to decrease and has eventually disappeared. I wonder.....was it the steroids, the Cymbalta or just the PN coming and going as it usually does?

Another weird thing, I have begun to have feelings like electrical shocks in my fingers and toes. Very painful for the few seconds that they last. I haven't figured out if anything exacerbates them, just know that it hurts like heck.

My main reason for posting is an unpleasant side effect, possibly from one of the meds. I am having terrible constipation as of the last month or so. I eat very well, I walk 3 miles at least 3-4 times/week and I am trying very hard to increase my fluids, especially water (yuk). Just wondering if anyone else has experienced this with Neurontin or Cymbalta? :frown:

I do have an appointment with a neuro at Cleveland Clinic on June 14th. He specializes in neuropathy so maybe he can shed some light on this "idiopathic" booger that is wreaking havoc on my (our) life. Will share what I find out after the appointment.

Until then......I want you all to know that this forum serves as a source of comfort to me. (not to mean that misery loves company, at all!!) I check in daily to see how everyone is getting along. Your words of encouragement and advice to each other warms my heart. I am fighting this as hard as I can and remind myself often that there is strength in numbers. :circlelove:

Hi kpRN. Cymbalta has a side effect of constipation in up to 15% of people. Oh, and one thing that helps me for constipation is magnesium supplements. (mrsD says Slow-mag is a good kind) Hope this helps.

Hi.

I have friends who try Miralax and they said it works wonders.

I myself do the benefiber thing. Two teaspoons in my coffee in the morning, and two teaspoons in a glass of water in the pm. You would NEVER know you are taking this stuff. It is clear and dissolves completely. You just can't put it in any kind of soda. So I use a packet of something called True Orange which are crystals and pour two little packets in a glass of water, and BAM, you have an orange drink with no sugar, no nothing. Very refreshing. I add my benefiber to this.

I do take stool softeners sometimes, but no laxatives. I GO EVERY DAY.

so give it a try.
Melody

Gonna give it a try
 

Thanks Melody. I am going to stop at the store on the way home and pick up the benefiber. I just can't help but wonder what is going on. I have never been like this before. Yesterday for example, I even ate 2 salads, a bowl of fresh strawberries and drank 3 bottles of water. Hope the benefiber works. I don't want to go the laxative route and be tied to my house for fear it will kick in when I am not close to a bathroom!! Yikes.....:eek:

I use Clear & Natural by Metamucil (used to be called 'Free & Clear') , @ 1/2 dosage of Benefiber (1 tsp per dose= 5 grams fiber vs 2 tsp Benefiber) & about the same cost for volume (about $12 for 11.5 oz bottle) so its 1/2 as expensive.
Gabapentin/Neurontin, & Lyrica/pregabalin, as well a pain meds - can be constipating, too.

Well, you're eating like a champ, you're drinking water like a champ, but your digestive system hasn't caught up with this yet.

Keep eating and drinking and give it a few days (I mean, once you begin benefiber). I would also be taking a cup of activia or any yogurt with live cultures). Unless you are allergic to dairy. Then I can' help you. lol

But between all these things, YOUR DIGESTIVE TRACT usually kicks in and you go every day.

If not, try asking your primary care and see what he says.

I researched the benefiber (as well as other similar products), and they work by forming and stool and having it pass out so it looks like Dr. Oz says IT'S SUPPOSED TO LOOK. Like snakes or pipes.

And the stool softeners make it so you go effortlessly. No straining. We all know that one should never strain on the toilet bowl.

I've been trying to get my 78 year old friend to start taking benefiber. She NEVER goes to the bathroom. She's all stopped up and she doesn't believe in anything but laxatives. But they don't work any more on her. She's been on them for year. I tried to explain (gently) to her that when one becomes dependent on laxatives, it affects the muscle that let's you GO to the bathroom and sooner or later, you can take all the laxatives you want to take but your body won't respond. This is what I believe is happening to her and I can't imagine how uncomfortable this must be like.

But she won't believe me. Oh well, nothing I can do, but GO every morning myself.

lol

Be well and HAPPY GOING!!!

Melody
P.S Please update and let me know if the Benefiber helped you. I feel like their Goodwill ambassador lol

The Miralax is good with Benefiber. Miralax sucks up moisture. I was on a combo of Miralax, Benefiber and Senna. While I was on substantial opiates....nada worked. I am surprised to here Cymbalta is causing this.

Have you been checked for autonomic neuropathy?

You can also try?
 

Fish Oil capsules [IF they're not too fishy?], Too many of those? Maybe a combo of that and magnesium? And you won't be able to publicly 'contain yourself!' Then work out which does what best and in what quantities.

I am truly surprised that docs, hospitals and rehab facilities don't ever take this aspect into consideration when prescribing pain killers! A few years ago I went in for a surgery and once the anathestic wore off they started in on the pain pills...I politely asked the nurse for ducolax or senecot or 'something' to help offset the possible issue? Nurse went [rightly so] Not in the orders! I replied well can you ask someone? DUH!?????? I got some softener med [don't recall which-but don't care] that helped...wouldn't 'DO' to over strain with stitches in you, now would it?

When and HOW do docs get enlightening 'litebulb' moments were it not for us?

Now, KP? Start writing up your medical HISTORY! Keep it to one page [docs have very short attention spans?] First list big things [Conditions] you have been diagnosed with- such as past surgeries, broken bones, thyroid, eye whatever w/a start time of month/year. Then list all Medications: ALL of them you take daily and how often + which of your docs prescribed it/or what it is for. Next: A list of your docs, their phone #'s and their specialties... so current doc can call them and consult about you. Also? Before you go in June? [not so long from now, really, you know?] Get copies of as many tests done on you since onset as you can get your hands on! Bring copies of those copies and keep the others for yourself. Also Any X-rays, MRI's Sono's and Dexa's or anything else. Get copies to bring and later return or keep for the future. I ALWAYS keep a copy of this 'history' with me in my purse. I always bring an updated copy [if there are changes] whenever I go to any doc + copies [for their records] of most recent blood work or other key test reports. That way, I don't get the same tests done several times over and over. I also get the blood work done at one lab and that way, all the results are done with the same hi/low 'values' that can vary from lab to lab.
Keep asking questions! There isn't one that's a silly one! I know, as I've asked some doozies here myself! Hugs and hope and good things soon! :hug::hug:'s - j

Saw the neuro today (for 15 minutes)
 

Back from the neurologist. Showed him my list of new or worsening symptoms. I made out a list ahead of time and basically told him "have a seat, we have things to discuss." :hissyfit:One thing that has definitely gotten worse is my tremors. He said that Cymbalta can cause that. Since I have only been on it since 4/9, he is going to take me off of it. Cutting the dose in half for one week and the second week I am only to take it every other day, then stop. (Hope that cures the constipation problem....sheez, that was getting way outta hand!!) Then he increased the neurontin to 900mg at bedtime. Told me that since it had been 14 years, chances are, it ain't gonna get any better. Duh!!:rolleyes: I have been telling him that. He said "you are going to have good days and bad days. Can I get another "duh" on that statement?? He is still convinced that this is diabetes related. We have done 4 HgbA1C's all which came back normal. Did another today. I asked him to do a fasting insulin......nope!! I also asked about a skin biopsy. His answer was doesn't matter whether it is small or large nerves involved, the treatment is the same.......symptomatically treated. He also said that there are only 3 places in the US qualified to interpret the biopsy and they aren't one of those 3. So I guess I keep plugging along, doing what I have been doing. Loving my family, going to work, church, and getting out to see friends when I feel like I have the energy.

One last thing compounding all of this, my youngest son enlisted in the military yesterday. Had one year left of college and he could have gone in as an officer. This is me yesterday :Bawling:

:circlelove: Have a happy holiday weekend. Hope everyone feels the best that they can feel, at least for one beautiful day!!

God Bless your Son!!

My thoughts and prayers are with you and your family, and I hope his journey in the military is not too stressful for you.

He's very brave, AND SO ARE YOU!!

Take care,
Melody