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

Please do not take our comments as criticism. Since you posted here, we suppose that you want our comments. We are just concerned, legitimately I believe, we taking taking a lot of medications. This is because medications have side effects and interactions with one another. Maybe yours are causing you no problems, who knows, but maybe they are. Even if you read all the research on these drugs you will not find the studies that the drugs cos. did not publish, nor the side affects that are presently unknown, nor the interactions with all other drugs. I'm not saying you shouldn't be taking them, I am just concerned. I would try to get off of them if I could, by using supplements instead, lifestyle changes, etc. I wish you well. I am recently having some deep pains too, in my arms, not fun. Neurontin and amitriptyline help me. Also the supplements evening primrose oil and alpha-lipoic acid. Others have suggested r-lipoic instead. There are many supplements that help some PNers, so search this board. Acetyl-l-carnitine is another good one. I recently posted a list from a book I read.
Electron

No criticism intended....I too, use hydrocodone, which I don't see being able to give up....unless there is some magic pill or miraculous recovery.

One more thing I want to make crystal clear....physical dependence on a medication is not addiction.

One can be physically dependent on many meds....even allergy pills....your body gets used to them and has a fit when it doesn't get them...even if you have no emotional attachment. That fit the body has, is, very much like the feelings of neuropathy....burning, restless legs, etc....

The only caution I have is to be more skeptical of those benzodiazepines.....they may seem to fix a problem, such as anxiety, only to produce a physical withdrawal between doses....it's a grind....I know....but if you need it, you need it and everything in life, basically boils down to risk versus benefit. You are not being judged. It is just prudent to look at medications first when analyzing any symptoms.

Topaz? I hope that I've not said anything critical?
 

I understand that the docs can often be 'critical' enough for all of us! And docs can take the brunt of prescribing meds. My own docs are pure cheapskates in doling out the 'painkillers' [not that they do really much good? just salve my conscience] But, sometimes? Getting additional concrete valid opinions by super-or above-average specialists CAN help you on to a diagnosis and then treatment!
IF I ever found something that really worked for me? I'd be chomping the pills down faster then M's! To get a GOOD and whole night's peaceful sleep? Is something I sure would like to get! Hopes and prayers that you do too!
Don't forget tho, that each of us comes here from a wide variety of diagnostics and experiences and doctors....good and bad.
Only YOU good person can find your way thru the testing and meds morass to get the help you need! Don't ever let them tell you you are wrong. YOU KNOW WHAT, at least, isn't RIGHT! Keep at it, it's a hard road, but it can prevent 'things' from getting worse.
I've a friend who's been wrestling the bi-polar and anxiety bear? I do believe that PN pain on top and all that goes with both...sure doesn't help things overall. It is NOT FUN!
Hugs to you, and stop beating your head against an ungiving wall!
My heart is with you and FOR you! Bravery is the only way I can think of you! :hug::hug::hug:'s - j

thanks
 

i'm sorry if i seem defensive but you get so many people who want to tell you not to take anything. when i first came down with this disease i really thought i was dying. the medications have been a lifesaver. i too have some concerns about being on a lot of medication. it does hamper ones life to a certain degree. i just feel that my pn is getting worse again and i wanted a few opinions from those who have been were i am. sorry if i jumped to the wrong conclusion. thank you all for taking the time to chime in.

That is so true, topaz. When I was recovering from a hysterectomy, an acquaintance proudly told me that she didn't take one pain pill after she had hers. I laughed and told her she was nuts as I popped another Vicodin. Pointless suffering does not equal bravery in my reckoning of things.

PN makes me think I am dying sometimes.....I have autonomic issues as well and frankly, NUTHIN works right any more....add in the pain. I too, don't like being told I can't take a pain medication.

For me, it seems the pain always up the ante....up the dose....pain ups the ante. I found the way I have to do it is, lower the dose....feel the pain, then resume taking meds....or take a med holiday or some garbage.

With dysautonomia, meds complicate things and make for even more problems....however, at times I can't stand it anymore and I MUST use meds, especially if my work load here at home increases. I don't have the option of 'reducing' my work load.

It does feel at times, like you have been robbed of your life, but, this is the card we drew.....and it IS hard to find people who understand the relentless pain and disability, especially when PN is described as affecting only the feet, with numbness and tingling.

Don't forget? We come here from soo many different ...
 

perspectives!
I worry about taking 'some pills w/other pills' because I've learned later that it wasn't good to just swallow 'em all at once in the morning! It can take me all day to take ALL my meds and supplements-some hours apart and others just to be safe each other hour! Can become an all day thing? But you do what you gotta do and only YOU know what that can be. But, being INFORMED [and often confused...know I've been that] comes with the territory. Just keep asking questions and you'll get a room full of answers? But maybe one room will feel just what you need.
As for some ?'s on meds? This is our forum for that:
http://neurotalk.psychcentral.com/forum72.html
As for supplements?:
http://neurotalk.psychcentral.com/forum49.html
Peppermint Patty? THIS last one is the one you need to cruise thru! Mrs D [who is on vacation now, and a well deserved one?] Has been a rock of sanity and info about calciums, and other supplements. Don't try to read it all at once tho? Your brain can turn to mush if you 'overdose' on all this info!

Hugs to all! :hug::hug::hug:'s!!!!!!!!!!! - j

I can't be taking pills all day. I gotta gulp 'em all in the am and in the pm before bed. In between, there are just too many thing in the way, at work. and it just doesn't comply with my schedule. So I just hope that they all can do their job withbeing together (mostly in the am before leaving the house for work).

I am on vacation and only have a short time on this wifi...

But I'd like to welcome you here to our forum. I see two glaring things... Prilosec will deplete several nutrients over time:

B12,
folate
calcium
magnesium
zinc
iron

I think you should get a B12 test done ASAP and also have Vit D done. People who use alot of medications often get depleted in nutrients and it can be different for different drugs. I don't have my references with me but I do have that Prilosec memorized...it is very common and I post it often.

Muscles require many things, including B6 for proper functioning. High doses of Prozac can also cause movement disorders but it is unclear if you have that exactly.

This site gives a summary of some depletions so you can look at that until I get back. Some drugs are too new to appear on these lists too.
http://www.chiro.org/nutrition/ABSTR...orticosteroids

You might find d-ribose useful...I have a thread here on it as I have been using it for about 3 months. It gives a nice improvement in stamina--
http://neurotalk.psychcentral.com/sh...ghlight=ribose

I KNEW Mrs D would come to the rescue!
 

This complicated stuffs! Mrs D? You ALWAYS make it seem simpler than it is!
As with Mary Poppins? You always give your info with a 'spoonful of sugar or something else yummy'! That makes IT, what ever it is, easier to get down! -with Mrs D!
Mrs D? You do have the knack of making complicated seem simple, at times? And simple complicated at times - as needed.
Yes m'am! You do have a gift for this all! Thank you! A hundred times over! From me, and I'll bet others.
Topaz? I, too thot I'd die from all this! At first. I'm still kicking and using my cane as an 'assertiveness tool' when needed! :rolleyes:
Canes are a whole lot easier to 'use' than walkers! And, what I can DO with a cane? Well, it's a lot TBD!
Keep your sense of humor? And get a keen alertness to some of the 'absurdities' you will encounter. Some are simply funny? Others absurd? Yet others create an 'OH, MY!' sense of dismay...the last are the scariest!
Hugs and hope and keep faith in YOURSELF! YOU are the only one who can truly help YOU! At times, it's hard work? But in the end? It's a short-cut to the 'it's too late' stuffs. So, get on the ball and get to WORK! Hugs and hope! Again :hug::hug::hug:'s - j