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Digilady
New Member


Date Joined Sep 2008
Total Posts : 4
   Posted 9/7/2008 10:25 PM (GMT -7)   
Hiya, I'm new here :)

I have severe fibro. I am on a plethora of drugs for it, including Amoxopine, hydrocodone, dexedrine, lunesta, and lyrica. I have to say that I'm OK until the last 2 days of the week, when I run out of meds, every single week. I only take enough to stay comfortable... without which, I don't get out of bed. My pain is worst in my legs and arms. And it's worst when I wake up. I actually wake up twice - once to take a pill, then the for real time, when the pill has hit.

My Dr. at least gives me the drugs that I am on, though never enough. I have been on this same doseage for 10 years or more. For the most part it works - except the last few days of the week, when I'm miserable. I realize that's more than a lot of people have.

Does anyone else have a weird schedule like that? A few days a week when you know you're hosed? And nothing to be done about it! :(

Anyway, it's good to have found you folks.

Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 9/7/2008 10:49 PM (GMT -7)   
Hi Digilady and welcome!

Many members here are also on prescription medications for pain. I would first suggest you do some reading in the archives here and see what others have done in this situation.

What you are likely to find is that if you are taking your medication as your doctor prescribed it you won't run out...and that's how it should be. If your dose is not covering your pain well enough then you need to be up front and honest with your doctor and tell him/her. By taking more medicine for several days, then depriving your body of any you are putting terrible strain on your system along with not having good control of the pain. Narcotic and other pain meds need to be taken on a constant and consistent schedule to do the most good. Otherwise your pain gets out of control and it takes more and more to regain that control. Raising the dosage of pain meds is very common over time. Some people need it once a year, others can go longer. But after 10 years you should certainly have your dosage raised. Your body is used to it and that's why it's not working as well.

Please talk to your doctor and consider taking the medication as prescribed. Inconsistent dosing is very dangerous.

Keep in touch,
Chutz
Co-Mod Fibromyalgia & Chronic Pain Forums
~~~
Fibromyalgia, Ulcerative Colitis, Insulin dependent diabetic, collapsed disk, dermatitis herpetiformus, osteo arthritis in spine and other locations.
***************

The only difference between genius and stupidity is that genius has it's limits. Albert Einstein: (1879-1955)


kelly71
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 9/7/2008 11:03 PM (GMT -7)   
Digilady,
 
Welcome to fibroland.  Sometimes it's a painful and bumpy ride, but it's totally worth it-because you'll always find amazing people and info at the end of it. :-)
 
Anyway, I'm no doctor, but it sounds like you are having breakthrough pain-because your body is used to having a certain amount of meds in it.  Chutzie is right on.  Narcotic meds work best if you take them in a consistent, Rxd, way.  That way, you'll always have enough meds in your bloodstream. 
 
It does sound like you need an increased dosage of something.  After 10 years, your body has most likely built up a tolerance to the narcotics.  I strongly encourage you to talk to your doc about this.  BTW-why do you only get a weeks worth of meds at a time?  Doesn't that get expensive-having to pay for multiple Rxs? confused
 
Also, please know that you should not be judged for your pain.  Some of us can take very little meds and function, and others of us (like me) need stronger pain meds to just "get out of bed," like you said.  Remember, the one thing we all have in common is fibro, so none of us should judge each other for what we need (or do not need) for pain.
 
OK, I'm getting off my soapbox, now.  Owww! cry   That hurts! smilewinkgrin
FINALLY dxd on 06/13/08
Vicodin, Neurontin, Ibuprofen for pain-which doesn't help, BTW
Zoloft & methadone (NOT for pain) for sanity-which doesn't help, BTW
Klonopin for anxiety (Guess what?  Doesn't help!)
Chantix to try to quit smoking (started 08/20/08)
 
"I'll take the Chivas instead"
-Kelly Clarkson


QTKaren
Veteran Member


Date Joined Apr 2008
Total Posts : 605
   Posted 9/7/2008 11:15 PM (GMT -7)   
Hi Digilady.
 
I have been there done that and it aint worth it.  I have been on the same dose of meds for about 5 years now and in my opinion I am undermedicaited.  I went to a pain clinic and was started on a low dose of morphine.  I was already taking norco which is double strength vicodin 2 tabs 4 times a day.  The idea was to get me to a comfortable dose of the morphine and use the vicodin for breakthrough pain but on my second visit to this doc he did a complete turn around on me and said I lived too far for him to treat me( even though I had been going through the urology dept out there for 2 years) and told me that I needed to get a job or take a walk and stop thinking about pain so much then he made me kick my husband out of the room because my husband was telling "what are you doing to her?  isnt it supposed to be do no harm to your patients?" so the doc said if he doesnt leave then I wont even write you out for the meds you already have.
 
And so that was it.  The urologist said she couldnt write for higher dose meds and wanted me to go back to my primary doc but they said they didnt write narcotic scripts at all(big fat lie as I know many older ppl they will write for including my mom) I think what the deal was is that this pain doc wanted to get me on the right doses and then refer me back to my primary to write the meds each month and didnt want to make me a reg patient as that is not what alot of pain clinics do,they set you up then refer you back.  I ended up changing primary docs but have had no luck getting into a reg pain clinic as most here dont take medicaid insurance anymore.  My primary can only write for what the other doc set up.  If I took enough of my meds to be truly comfortable I would run short too because I would not be taking them as directed.
 
What i do is take drug holidays every few months to reset my tolerance levels.  I lower my doses on purpose for about a week so when I go back to the reg dose I get good pain relief again.  I know its not fair but its the best I can do because if I dont do this my tolerance level will just keep climbing higher until what I am given wont work at all.  Does it make me mad that I finally thought somebody was going to give me real help and then pulled the plug? hell yes it does!  I was told that the morphine would offer round the clock even pain relief with seldom having to use the vicodin for breakthrough pain.  Instead,I use the vicodin for the majority of the pain relief and the low does of morphine just helps the vicodin work better and longer.  I did start taking Lyrica about 5 months ago and that was a life saver for me as I had developed horrible burning and aching pain in my legs,feet and back and all the vicodin in the world would not have got rid of that pain.  I felt like killing myself the pain was that bad.  All I know is I did alot of praying and God much have heard something cause I got the Lyrica and can tolerate it well.  It is bullcrap though that we have to keep our mouths shut and take alot of the pain so that we dont come off as drug seekers even though I got to say that the primary doc I have now is doing the best he can to help with my pain.  Its sad though that you mention narcotics and ppl think ohhhhhh you must be feelin no pain like your high all dang day when thats not true at all.   The only time I feel a little buzzed is when I first go back on my reg dose of meds but that is for like one day and then I am fine again.  I do have to watch what I do on a daily basis though because specially with the fibro now I can throw myself into a flare easily if I overdo which I have to admit I still so that way too much but am learning to say no if its something that will cause pain when doing chores or favors for others.  I wish you good luck with getting better pain relief.  All I know if I ended up so short 2 or 3 days a week I would end up in withdrawel and that is hell for sure.
 
Soft Hug's,
Karen
Karen
 
Mom of one gramma to 4
 
Fibromyalgia,IBS,Stroke x2,endometriosis,Diabetes type 2,neuropathic pain,nerve damage due to tailbone removel,nerve damage due to fractured back,deppresion,high blood pressure,severe nausea,atrophy,chronic pain,nerve damage due to botched bladder surgery,torn hip joint,hypoglycymic
 
Norco(double strength vicodin) 80 to 100 mg @ day
Ms Contin(morphine) 45 mg @ day
Lyrica 600mg @ day
Baclofen 30mg@day
 


Digilady
New Member


Date Joined Sep 2008
Total Posts : 4
   Posted 9/8/2008 12:09 AM (GMT -7)   
Thanks for the replies! My dr. hasn't given me the right amount on the prescription - it says 2 every 4 hours on the bottle, and that's precisely what I do. Yet I run short. And he refuses to up the dosage :( until I found him, and he is a shrink. I couldn't find a dr. that would even treat fibro, here in Nashville. This was ten years ago. I haven't looked, lately. It was such a dreadful experience, looking for a dr,. that I get panic attacks even thinking about it!!

If anyone knows of a good fibro doc in Nashville, please let me know. I have tried bloody everything - from herbs, to you name it. The Lyrica works for the leg oogies, as I call them, but not for the pain. I am glad enough to get rid of the oogies.
 
Please read forum rule #2.  We have kids as young as 13 on these forums so no mention of self harm are permitted. 
 
Sherrine

Post Edited By Moderator (Sherrine) : 9/9/2008 11:43:58 AM (GMT-6)


Sue2z
Regular Member


Date Joined Jul 2008
Total Posts : 368
   Posted 9/8/2008 12:48 AM (GMT -7)   
sad   I just thought id let you know I also see a shrink, they seem to understand that its nervous system related. I get meds from a pain specialist plus the doc and the phyc.  I am on narcotics for the past year and before then .  Just wanted you to know your not alone.. sue2z :-) :-) :-)
 
Please read forum rule #2.  We have kids as young as 13 on these forums so no mention of self harm is permitted.
 
Sherrine 

Post Edited By Moderator (Sherrine) : 9/9/2008 11:45:39 AM (GMT-6)


Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 9/8/2008 6:39 AM (GMT -7)   
Hi Digilady and welcome to the fibro family. I hope you get the med situation under control. Read the fibro 101 thread, second thread on first page, there is a lot of great info in it.
 
Ask questions and read as much as you can and we will be here for you.
 
luv and hugs
Marlee
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches and Tramadol
 
Co Q 10, Super B Complex, Extra B12, Multi vitamin


AustenFan
Veteran Member


Date Joined Aug 2008
Total Posts : 1771
   Posted 9/8/2008 7:12 AM (GMT -7)   
Dr. Victor Byrd is a good rheumatologist in Nashville.  I don't know his stance on pain management drugs because I cannot tolerate them, but I do know that he treats a lot of fibro patients.
 
Also, you might consider the Rheumatology Clinic at Vanderbilt Medical Center.  I've gotten pretty comprehensive care at Vandy for other conditions.
 
My heart goes out to you. 
 
"There is no charm equal to tenderness of  heart." - Jane Austen
 
 
Fibromyalgia, 2 back surgeries, Meniere's Disease, 30+ kidney stones, GERD, IBS, Asthma, Allergies, Endometriosis, Heart Arrythmia, Myofascial Pain, TMJ.
 
 
 
 
 
 


Digilady
New Member


Date Joined Sep 2008
Total Posts : 4
   Posted 9/8/2008 1:09 PM (GMT -7)   
thank you AustenFan! I will give him a call. Sounds wonderful.

Today is a bad day... I can't get my meds until tomorrow, so I'm out, as usual. But tomorrow will be good. I am going to try to cut back some, altho that means I won't get out of bed. Anyone else the same way?

I have to go to LA in 2 weeks (I'm in Nashville) for, of all things, the Big Brother finale and wrap party. Anyone watch BB? LOL I'm probably the only one! I promised producers I'd go, or the way I feel, I never would. I have gotten out of it for the past 4 years, so there are no more excuses possible. Away I go! I will take a 2 week supply of all meds with me, my dr. is good about it, I travel so infrequently. I went to FLA this year, but before that, it was 10 years! Wow, eh?

kelly71
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 9/8/2008 2:16 PM (GMT -7)   
Digilady,
 
Are you kidding me?  shocked I have watched every season of Big Brother (except I missed part of the All-Star season).  I am definitely a fan (and I have a lupus frind I talk with and we always have a BB wrap up discussion).  I'm in SoCal right now (about an hour outside of LA-without traffic.  With traffic, it could take up to 4 hours, LOL smilewinkgrin ).  I grew up in the south, too.  I'm trying to move back to SC, ASAP. eyes
 
Anyway, yes, I do have those "can't get out of bed days" (meds or no meds).  I really hope you find some relief for your pain.  Please remember that you aren't alone in this, OK?  We all get it. wink
FINALLY dxd on 06/13/08
Vicodin, Neurontin, Ibuprofen for pain-which doesn't help, BTW
Zoloft & methadone (NOT for pain) for sanity-which doesn't help, BTW
Klonopin for anxiety (Guess what?  Doesn't help!)
Chantix to try to quit smoking (started 08/20/08)
 
"I'll take the Chivas instead"
-Kelly Clarkson


SassyIsMyKitty
Regular Member


Date Joined May 2008
Total Posts : 223
   Posted 9/8/2008 3:40 PM (GMT -7)   
Digilady,
You are definately not alone. My pain meds (I am also on Hydrocodone) run out before the month is over unless I go without them until I am in severe enough pain. My insurance does not cover more than 90 per month. But the way they are prescribed to me, it is only a 15 day supply. So I must take them very sparingly. I am also on Lyrica. I also talk Trazodone, Robaxin, Zoloft, and Xanax. I know what it feels like to be on a lot of medications. I really don't care how many I have to take as long as it helps, you know? But I hate the fact that I have to be careful with my pain meds so I don't run out. You are not alone, my friend. You can take comfort in that fact.

Piercings
Regular Member


Date Joined Aug 2008
Total Posts : 326
   Posted 9/8/2008 7:59 PM (GMT -7)   
I would definitely make the recommendation to find a rheumy in your area or to look into seeing another doc. Like has been said so many times already, 10 years at the same dose is a bit much.

Recently I had to do what I felt was defeat and go back onto narcotics. I had been doing good over the summer till I was forced into a surgery. But I went in and explained what I was feeling again and my doc put me back on. Even as it is I'm sitting and waiting on a callback from him due to the fact that the prescribed level was something that we had set when I was in office and hadn't accounted for the fact that I was going to be going through Phys Ther again and was going to end up with more breakthrough than expected. So rather than running myself out I've called in to let him know that I'm taking it at a higher level and that I'm going to be asking for more sooner than anticipated.

With all the @#&^ that we have to go through now to be able to get the relief that we need, I'm making sure that I'm up on board with him as to what's going on and what I'm doing. Last thing that any of us need to is have to have those days without any relief.

Digi...even if you can't get in with the doc that was recommended to you earlier on here, there's a listing of rheumys by area. http://www.rheumatology.org/directory/geo.asp

SassyIsMyKitty
Regular Member


Date Joined May 2008
Total Posts : 223
   Posted 9/9/2008 6:21 AM (GMT -7)   
The hard thing for me when they were setting my referral was finding a rheumy that would take my insurance. So I have to go out of town to see the rheumy. I really don't care, though. I mean, I am finally getting in to see a specialist. That is what really matters to me.

May your heart be filled with love and joy.
May your mind be clear and true.
May your smiles be many,
And may your tears be few. 
May God wrap you in His arms
Especially when you're feeling blue.


Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 9/9/2008 8:04 AM (GMT -7)   
Hi TikiIsMyKitty and welcome to our family. As your already finding out this is a great place for sharing and caring. Read and ask questions and you will learn a lot on here.
 
DigiLady, big fan of BB here. Are you involved with the show??? I'm not liking the way it is going right now. I'm also a big Survivor fan.
 
I'm not on narcotics so I don't know much about all the hoops you have to jump through to get them. I am on xanax which is very controlled and my doc rxs three a day but I only take 2 1/2  a day so I always have a little left in case I can't get them right away. Okay, I've been going to the same doc for about 15 yrs so we can talk openly about the dosage and why he doesn't want me going beyond three a day. I have been on more and they seem to be tightening up even on xanax. My point is if your doc rxd a little higher dose than you take, as long as you don't take the extra, wouldn't your ins have to pay for the higher dose and you would have enough to get through the month??? Does that make sense to anyone??? I have a headache this morning and can't think straight. smhair
 
luv and hugs
Marlee

Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches and Tramadol
 
Co Q 10, Super B Complex, Extra B12, Multi vitamin


GamJill
Veteran Member


Date Joined Jun 2008
Total Posts : 1279
   Posted 9/9/2008 9:05 AM (GMT -7)   
Hi Digilady and Tiki-
Welcome! I take Tylenol ES, 4,000 mg a day and have Darvocet for back up. I have a prescription filled for Lyrica but have not started it yet. So leary of medications, but would like to try something to get more pain relief also. I have not gone through what your going through but hoping you can get this figured out.
Stop in for our daily check-ins, Chutz keeps us "thinking or "doing." This support group is wonderful!
Nice to meet you- GamJill
 
 
Fibromyalgia, Depression, Anxiety, TMJ, Arthritis/neck
 
Zoloft, Tylenol 4000 mg., Zanaflex


SassyIsMyKitty
Regular Member


Date Joined May 2008
Total Posts : 223
   Posted 9/10/2008 9:48 AM (GMT -7)   
Lyrica is a good drug. I have not had any sideffects being on it, though I take it at night since it does make me a little sleepy. It does help with the pain some. Not a cure, but it does makes doing day-to-day things easier.

May your heart be filled with love and joy.
May your mind be clear and true.
May your smiles be many,
And may your tears be few. 
May God wrap you in His arms
Especially when you're feeling blue.


donnaeil
Veteran Member


Date Joined Jun 2006
Total Posts : 1156
   Posted 9/10/2008 11:42 PM (GMT -7)   
4000 mg daily of tylenol maybe more dangerous than taking Lyrica.

I too would not get out of beds without meds. I hae been on the same dosage for about three years and yes, it is not enough.

However, I try to wrok out in the pool everyday for two hours each time. It helps immensely. Funny, i need meds in order to exercise and I use them.

Doctors are notorious for not helping us feel relief. I have gone to two pain specialists who were absolutely worthless. Keep looking for a doctor who will help you.

I am keeping my primary physician because I do not want to put up with bs from a different doctor. At least mine helps me with some pain relief.

Donnaeil

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17094
   Posted 9/11/2008 7:15 AM (GMT -7)   
4,000 mg of Tylenol is the highest safe amount you should take, according to my doctor.
 
Sherrine
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7

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