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

Oh, sheesh.

I suspect this doctor doesn't know how to interpret fasting INSULIN. That is why he wouldn't order it.

But at least you are off the dreaded Cymbalta. Must be no more Lilly reps pushing it at him! Cymbalta is damaging to the liver and you don't really need that.

I know how you feel, deflated when coming back from a doctor who is supposed to help you. I know this feeling well.

I don't recall, your B12 testing or Vit D? If that was not done, and you don't want to ask for it, I'd start with 2000mcg of methylcobalamin now, and also 2000IU of D3.

If he is convinced of diabetes...in the face of normal A1Cs then I'd also do benfotiamine 300mg a day for 3 months. See what happens. Lipoic acid (r- form is better) also helps with diabetic neuropathy. So does Acetyl Carnitine. More and more studies are showing up for carnitine for diabetes.

As far as the military goes, I would be worried too. I worried every second my husband was in Vietnam! But one thing I have learned about male children is that at a certain point they don't listen to their Mothers anymore. sigh. I will send positive thoughts that your son remains safe. That is all you can do too..nightly send those positive thoughts out!

You are soooo right!!
 

You are so right about boys and their not listening to their mothers after a certain age. I try and share my life experiences / wisdom but then what do I know? Like it is my first rodeo!!:Doh:I guess the saying "a man's gotta do what a man's gotta do" is appropriate here. You can bet I will continue saying a nightly prayer......for all of our troops. Thanks for your help, I will print this off and try the different supplements. Today I am really shaky, I hope after I wean off the Cymbalta that this gets better. It is a huge interference with my being able to work. I got away from the clinical side of nursing because of the PPN and went into management. Now it is making it hard for me to even do this job. I can't quit because I carry the health insurance for the family and I am the primary breadwinner. Just pray that I can continue to go on.........:smileypray: Sometimes I feel like the weight of the world is on my shoulders. PS...you are right about the doctor not being able to interpret the fasting insulin. His response was "I am not a diabetologist." :confused: Is that even a word? I will ask my PCP to order it for me. He is my go-to guy when the neuro is not cooperating.:icon_biggrin:
B12 level was 512. Vitamin D was not done. Will ask PCP for that as well.

Fasting insulin starts creeping up during insulin resistance. This test may be elevated when others show "normal". It is a good indicator to follow a metabolic type diet or The Zone.

Really high levels can indicate a islet tumor, but those are pretty rare. You'd be getting really low blood sugar attacks as a warning then.

As far as men go, I think testosterone blocks "hearing" LOL.

In teens it seems to block logic too! We have some teen boys, just moved into our neighborhood. We are hilly and have blind curves, blocking safe driving the narrow streets. For many years most of us have asked the city for "ONE way changes to the traffic flow" because of this. Well, these new kids, wear NO protective clothing or helmets, and skate board all over the dangerous street. They cannot see oncoming traffic and I almost hit one of them 2 wks ago, in fact (around a blind curve). They also go racing thru stop signs, which are there to slow the traffic, because of the poor visibility. Some of the other neighbors complained to the police and were rewarded by having their homes paintballed in retaliation, and 2 houses had their screens cut too! (we were spared, because we didn't complain). The other day 3 of these kids were leaping off the wall that holds the hill back, and smashing onto the pavement. No protective gear--- and we haven't seen them since! I am sure this is an example of testosterone poisoning! :rolleyes: sigh. (oh, and they threw away their cans of Arizona Iced Tea in my new garden at the corner too! :rolleyes:
At the rate they are going, they won't be in the gene pool much longer!

(apologies to our male posters.) Every once in a while we drive by the train tracks, or a big hill and hubby (who is so unmacho) regales me with the stuff he did on the train tracks in his day! So even he did this type of stuff! GADS.

Hi.

I suspect the diabetologist that he is referring to is an ENDOCRINOLOGIST. Try and find a good one, and he'll run every diabetic test known to man. That way YOU'LL DEFINITELY RULE OUT DIABETES.

Take care,
melody

Things are moving along (lol)
 

Started weaning off the Cymbalta and guess what, well without being too specific, I am no longer constipated and things are getting back to normal. They are also weaning me off because of tremors, I had slight tremors occasionally but they got pretty bad with the Cymbalta. Bye Bye Cymbalta.:Sorry:

I attribute my PTSD to my son, volunteering to go to Iraq! Volunteering!! My begging and pleading did nothing to disuade him and I lost a year of my life watching scroll on CNN. I don't remember anything other than scroll and the monthly box we sent him with whatever holiday theme we did it in.....halloween, thanksgiving, christmas, valentines, st. patty's etc...... It has been 5 years since he got home...... He got spewed out the other end of the military in one piece....albiet with one very close call that netted him a purple heart and disability payments.....and nasty dreams.

MRSD is so correct....young men do not listen to their mothers.

Soldiers are some one's baby.

He no longer places weapons strategically around the house and keeps them in the gun safe.....things are getting better, for him.

I still can't watch a war movie, and this whole thing did not help my autonomic nervous system....ugh. I burst into tears at the mention of anything military.....memorials leave me drained for days.

My daughter deploys early next year for her second tour in the middle east and we will be raising her one year old son for a year. I am in training for this.

I feel for you....I will keep you in my thoughts.:hug:

Kudos to you for taking on your granddaughter while your daughter is serving overseas.
I won't ask about the father's responsibilities, here.
I listened to my mother. she said DO ANYTHING you can think of to not be drafted & go to Vietnam. In 1963 I was called to report, but I flunked my pre-induction psych physical. I used my position of only child. Sole son, and my acting skills - to be disqualified. Consequently, I was not drafted, finished my college education with average marks (except in drama, English, and communication TV & Radio) for the required courses I didn't care about.
I was a hippie, coffee house, folk singer/actor in the '60's.
Then got married in '67 & raised family #1.
In '79 I divorced, and in '84 started family #2.

Oh Bob....it is grandSON. He will spend his second year of life with us. Dad is in the picture but will be deployed and has just found out he is a dad....long story.:confused: He will pan out OK. This daughter had a rough start in life, coming to us at age 9.....is just learning about consequences......

I have two granddaughters....one is the baby of my volunteering vet, aged 15 months...nicely nuzzled into the safety of well employed devoted parents, nice little home, and 2 clans of doting relatives dating back to infinity....She has my eyes, and temperment....Grandpa calls this cutie 'Grumpus'.

The other granddaughter is 2 and has just moved in with me....oh, she brought her parents, as toddlers do, both unemployed.:o This daughter had a rough start until we adopted her at age 10....so naturally she was a mother at 20.:p Fortunately, she and hubby have done a pretty good job with this little girl who has found a very snug place in my heart! Well, ok....they all have. Daddy had to ride a bike to a temporary job today, because my car was in the shop, and it was raining and it was far away in town and he had to ride thru the countryside and got lost and had to go up the only hill in the county with a small bike stuck in one gear. Poor guy....pity the man who has to move in with his mother in law and ride a bike to work. Hey, he cooked dinner tonight too....he can't be all bad.

My hubby was 4F....shoulder joint issues...charcot joint or something...number 108. I do think he regrets not going....I don't regret him not going. He is a very sweet man and I don't picture him with a gun....me yes, him no. We are not a military family....it just happened.

Hubby's dad, was wounded at Saipan....and again at Tinean. Twice before they shipped him home, shrapnel and all.

He had a bit of forgetfulness in his last years and had to go to 'daycare' for a time. When asked how his day at day care was, he replied 'Don't worry about me, I can take it, after all, I was a Marine' lol. He never lost his wonderful Irish sense of humor to the end. Fabulous man. He is my role model for 'in-lawing'. He was the best.

I have 4 kids & 9 grandkids.
Seven by my daughter aging from 22 to 1-1/2.
One by my #1 son, is 22 also. #2 son has a 6 y.o.
2 are still in diapers, one wants to be a pro baseball player (age 16)
and is probably good enough, one wants to be a dancer (age 11)
and competes in local competitions, and she gets high trophies.
My 'actor/musician/performance' genes, I think.
The rest still have 'Binkys' or are still playing with Playskool trains/houses & Spidey figurines and are too young to tell, yet.

My husband and my brother both served in the Marine Corps so I know what life as a military spouse is like. My dad also retired from the Navy after 30 years so I have also experienced military life through a child's eyes. I am hoping (and praying) that my son finds what he is looking for since this is obviously what he wants to do. I am not thrilled but I will be supportive. I keep telling myself that many other mothers are going through or have gone through this and if they can do it, so can I. No grandchildren as of yet.

Well, since I haven't seen my own son in 8 1/2 years, and I, no doubt, will NEVER be a grandma to anybody, I DO have a funny military story to share.

My father was in World War 2. He told me the funniest story. He was driving a truck while he was stationed in Germany. And up until that time, my father had never pulled a rifle on ANYONE (including the enemy).

One day, he was driving through what he thought was safe territory when this German soldier pops out of the bushes, and my father thought he was going to have a heart attack. The guy points a rifle at him and gestures to my father to get out of the truck.

My father does so. The next thing he knew was that the guy hands my father the rifle, puts up his hands and said the only words he knew how to say in English "I SURRENDER", I SURRENDER, (and as if to mimick the words "GET ME THE H, OUT OF HERE".

So my father did the only thing he could do. He told the guy to hop in the back of the truck and he drove his prisoner to the army camp where he was stationed.

My father said "You have never seen the heroes welcome I got when I brought this guy in". "Everybody was hooping and hollering that I captured a Nazi". I said "This guy was a Nazi?" and my father said "Who knows, but I caught a prisoner, he was German and everybody clapped me on the back and said "Good Job Frank".

So my father had one good prison story to bring home. Oh he had a lot of OTHER prison stories, involving women and England but that is for another time and another thread.

lol

P.S. We should ALL pray for our loyal soldiers who protect us every single day.