muscle/ bone/ joint pain
 

I am new here but not to neuropathy. Mine started eight years ago with severe burning in my feet. I've had at least five emg's and about four rounds of ivig. I have also suffered two rounds of guillian bare syndrome.i was totally paralyzed fron the ribs down durinf my last bout. I had to learn hoe to walk again with both rounds.
Recently i've started suffering a deep bone and muscle pain that never goes away. I can hardly get up out of a chair.
My meds are neurontin 400mg 3x's daily,ms contin 15 mg 2x's daily,prozac 20mg 3x's daily, klonopin 1mg 3x's daily, abilify 30 mg 1x daily, prilosec 20mg 1`x daily, lovaza 4gm daily and coumadin.
My question is does anyone else have this bone/ muscle pain and are there better meds for my condition.

1200mgs Neurontin is a low or starting dosage unless you have a specific reason....maybe this could be raised slowly (with Dr. of course), I took 3600mg. And something else could be lowered then....some people cannot tolerate a high dosage of Neurontin or only a mid-dosage. (I don't have experience with the other meds for PN.)

A newer med, Lyrica, is a "replacement" of Neurontin or sometimes used with Neurontin (not sure why). I tried it but it caused swelling for me, a side-effect for some.

You are taking 8 drugs, wow!!! That is scary to me. Who knows how they interact, and you are open to lots of side effects, both known and unknown.
Electron

I have severe bone-muscle-joint pain.

I see you are on some heavy duty meds....I agree, it is hard to weed out what is disease and what is drug side effects.

8 is not a lot, really. My doctors had me on over 30 pills a day, which was I think 14 or 15 different medicines... I am not on that many right now, thankfully.. they weren't helping so I have gone off of most of them... but 8 seems like such a low number to me.

For me, with Autonomic Neuropathy, less is better. I think Electron likely has some concerns regarding a few of the psychotropics combined with pain meds.

For example, klonopin 1mg, translates to approximately 20mg of valium, but the half life can be up to 80 hours....meaning, you won't even experience much withdrawal from the drug for up to 3 days, then wham. It can accumulate to very high levels due to the long half life.

http://web4health.info/it/bio-benzo-overview.htm

In addition, some drugs cause others to accumulate more than if the drug was taken alone.

Anyway, every one has to find their own way in this disease, but benzodiazepines can actually cause more problems.

I do think that doctors should have to go thru a course on Benzodiazepines and z drugs.....if most of them ever had to go thru a withdrawal, even low dose, they would prescribe them very sparingly. Withdrawal from benzodiazepines can be life threatening even at low doses, and produces a neuropathy like syndrome.

Abilify is a potent inhibitor of dopamine. It can cause movement disorders in vulnerable people.

A risk versus benefit analysis needs to be done by every patient taking these drugs. It is a personal choice, though, and as some one who opted OFF the drugs, I feel that every one has to make their own decisions. It is true that some of these drugs actually make matters worse.

Any one going OFF any drug, needs to consult with their physician. Weaning schedules need to be developed and followed.

Neurontin is a known calcium drainer.....
 

It's not outlined here: http://www.pfizer.com/files/products/uspi_neurontin.pdf
But a lot of drugs/meds designed as anti-seizure meds [as neurontin] are known calcium drainers. That bone 'ache' I have had! It's due to the meds. Not to mention a heap of extra dental work!
Start with this thread by Mrs D -
http://neurotalk.psychcentral.com/sh...ad.php?t=42135
Read up on all the supplements here?
http://neurotalk.psychcentral.com/forum49.html
Your timing is off? Mrs D just left for her country 'camp' on an island somewhere in Lake Michigan I believe, She gets in touch intermittently, as connections and battery power allow.
BUT? She helped me by learning that I needed a calcium citrate [NOT carbonate] w/a dollop of magnesium and Vitamin D to help get the calcium into our systems. Go to a vitamin or health food shop where the folks seem 'not comatose'? [you know what I mean]. I was lucky and found a smart salesperson who didn't do it for 'commissions' but sure knew her stuff! She must be Mrs. D's cousin-once removed or something.
You want safe, accurate doses of what you buy? I do know Mrs D prefers I-herb products? But, when you're new? It's all so mind-boggling!
Read her info? But do it slowly. There is a heap of info in there that is hard to take in on first reading. Or second, even third!
Start the calcium plus supplements and it'll take about 3-6 weeks for it to truly kick in? But IT DOES! Have you had a dexa scan in the last few years? One recently to compare to others? Can't hurt to get docs to see them. Can't hurt AT ALL!
Has any doc done a FULL METABOLIC blood panel on you in the last year? IF not ASK? Can't hurt to ask - then see if you can get a copy! Some of the 'borderline' stuff can be important to know as well. By borderline-I mean that not[*]'ed as too much or too little. You'd be surprised how taking target vitamins or minerals can help w/these tests? And help you improve your healing as best as it can! :hug::hug::hug:'s - j

thanks
 

Thank you all for the advice. I too am concerned about how many medications i take. Believe me that number has come down over the years. I know that a lot of people are benzo phobic but i suffer from bipolar disorder,anxiety, depression and hypercoagulation of the blood.i have been with the same doctor for the past six years. All in all i am happy with his treatment. I just wish the pain would get to a more tolerable level. I have tried lyrica and found very little difference from neurontin. I also have drug allergies that make some drugs like topamax out of the question for me. I came here open to suggestions and seem to have found more critasism than anything. I have done a lot of research on the meds that i take and never add a new one without reading first. So please do not judge me as you would an addict.

Can you share why? They have me on calcium twice daily, but it's carbonate, not citrate.

And topaz, I'm on 12 meds right now if you count my two supplements. :( Not where I'd like to be, but it's the best I can do for now. I have some procedures and a surgery upcoming that will hopefully let me cut back on those.

Sorry Topaz, having just read through your thread I dont think anyone is criticising, my experience of this forum is that everyone is well meaning and helpful - we are all on medication we would rather not be on.
Hope you feel better soon