this last Thursday and was prescribed:
1) Cymbalta 30 mg 1 Tab/Morning for 7 days, then increase to 60 mg.
2) Piroxicam 20 mg 1 Tab/Morning
3) Cyclobenzaprine 10 mg 1 Tab/Night, work up to 1 Tab/3x a Day.
4) Amitripyline 10 mg 1 Tab/Night for 1 week, then 2 Tabs.
Which I got filled Friday and started taking Saturday.
Though by Monday the doctors office told me to stop one of the ones at night because I was just way too spaced out, so I stopped the Amitripyline since both it and the Cymbalta are antidepressants.
I have noticed a few minor improvements in my pain, such as if I bend over, I've been able to straighten up more easily, most of the time, not always.
But I'm still having to take Hydrocodone 10/650 just to function normally.

I was wondering how many of you still depend on a narcotic to function?
What is it?
How much do you take in the course of a day on average?

I'm asking because I'm going to have to fight with my PCP for now to get an adequate amount (if I'm lucky), Then hopefully my Pain Management doc will take over next time I see him. I just didn't want to ask the pain management doc for a narcotic on my first visit and get immediately tagged as a drug seeker like so many CP patients are these days.
Up to this point, my PCP was treating me for DDD, Double Sciatica and Spurs in my neck and only allowing me 2-3 pills a day and fussing about scripting that.
TIA for any help.

I take Norco, 6/day. However, I would just point out that I had to go through trying many other meds first, and I still take flexeril, among other things, because I find it does help somewhat.

From a doctor's perspective, narcotics are a treatment of last resort for fibro. They believe that research shows that other meds are more likely to help more in the long run, at least until proven otherwise for a particular patient.

It is very hard to get narcotics for Fibromyalgia. Most of the time they will throw you on Lyrica. I have had fibro for 10 years and I have just now been given narcotics for treatment.

Thanks, I've already strongly infornmed both doctors to not even mention Lyrica, because my PCP did suggest it even before my diagnoses and I tried it. It scared the H*LL out of me! I was afraid to even get out of my chair and move for 6 hrs because I thought I'd fall flat on my face.
But as for incorporating other meds with the hydro, that's fine with me. So far, as I said, I have found a slight benefit with them, but just not near enough to handle all the different issues, or the level of pain I have.
But TY both for your help and advice. I know I'm facing an uphill battle. But now know that 6 a day is not unreasonable, and that's about what I've been needing.

Everyone reacts differently to drugs that they are given by their doctors, if you have a decent doctor he will keep changing your pain meds until something suitable is found. This may take some time. Doctors are not keen to give out narcotics, the first is that they are very addictive; the other is that the DEA comes down on them heavily if prescribed over a long period of time and will threaten to pull his license.

I know this sounds like a silly question but have you tried a chronic pain clinic. Get a copy of all your notes and take them along and see what they have to offer. Too many people with long-term pain issues find it difficult to find a doctor to prescribe what you need. Especial as a tolerance over a long-term period means that the body reaches a tolerance level and more of the drug needs to be given to control the pain.
If your own doctor is not willing to help then change doctors until you find one who is sympathetic to your plight

Let us know how you are getting on.

Morello, Sorry it's taken me so long to reply. Thank you for your suggestion, but I've already been through everything this state has to offer with my DH and his DDD and Avascular Necrosis (he had a total hip replacement almost a year ago). And there is no pain clinic available in this state, or at least not the type I believe your referring too.
The PM that I'm now seeing is the same one my husband is now with after going from doctor to doctor and clinic to clinic. Before finding this doctor, all the others wanted to do was whatever the procedure de jour at the moment was and send us the bill. By the time we finally got to this PM who referred us to the hip doc that finally and quickly diagnosed the Avascular Necrosis and did the hip replacement, most of our savings had run out. And the hip replacement pretty much finished us off. So I can't afford to play their games anymore with me. But I believe that this PM is compassionate. Or at least I pray he is. Only time will tell.

You can do a search on pain clinics in your area, ones who treat fibromyalgia usually mention in it their listing (yellow pages, internet, etc) You can call and ask if they ever treat fibro with narcotics after other methods are exhausted, you do not have to tell them who you are and they will usually say one way or the other. Maybe not always, but I have had them be honest upfront about it.

Frustrated,
it sounds to me like you need a low dose long acting opiate med like ms-contin or oxycontin. even methadone as odd as that sounds, is very effective at general pain control. 6 hydro a day is pushing your luck and there are plenty of medications that would replace that with a single pill each morning and nite. the downside is that most are horribly expensive. I had to give up a successful combo of meds because of the cost when i lost my insurance.
The 2 that are affordable are Ms-contin and Methadone. The methadone is dirt cheap, almost give-away prices.

I was given some Lyrica samples and ask to try them for 2 weeks to see what kind of result they might offer me. I stopped after only a few days because they just made me feel odd, is the best description that I can come up with. I quit before it became a problem and they never ask me to try again, so there must be others that dont believe in this years latest greatest medication thats non-narcotic.
Good luck to you in your search for something that allows you to live again.

I just have to giggle about the Lyrica. This drug did the same thing to me. I was told to take it 3 times a day. I couldn't get past one pill. Within 40 to 50 minutes I couldn't lift my head and was in bed within 60 minutes and still felt sleepy, heavily druged the next day. I think I would have been in a coma if I took the full 3.
I know others swear by this med but it sure wasn't for me either. I've never had a med do that to me so fast and so strong.
Good luck and I hope you find a Dr. to help you.
K

I've had fibro for over 25 yrs. been through all the pain meds, & found Kratom to be the most effective. I no longer need meds unless the pain's unbearable, which it often is. I've been using the Kratom for over a yr. now without a built up tolerance like all the meds do. Now when I do have to resort to a pain med it works so much better.

I tried MS-Contin for fibro, but I find Norco works better for this. Actually, my PM doctor said methadone was probably the best narcotic pain med for fibromyalgia, but I can't take it due to marginal QT syndrome.

Also, I wonder why 6 hydros a day would be pushing your luck? If you are talking about the tylenol, its a little less than 2 grams/day total, which is pretty safe for most people so long as you avoid taking any more of it (that might be contained in other medications).

I was recently diagnosed with terminal cancer on top of all my other problems too many to post. Mostly spine problems, DDD and just about anything that can go wrong for a spine is about what I live with.

I'm scripted Fentanyl patches and Hydromorphone for breakthru. Both during the day.

I have to say, I do feel a little relief but you couldn't imagine my level of pain, it's easily a 6/7 constant. I feel like I was shot in my gut with an exploding tip bullet.

My cancer pain is very bad too, I literally use a machine (pulley system) to help me out of bed. I then need a cane to walk or risk a major fall.

In my shoes you couldn't be scripted too much meds, imagine a 7 level of pain all day? That's not to mention when I feel even worse, pain jumps to 10/10 and that isn't an over rated level.

I get by mentally with 1mg Xanax, 150mg Seroquel and 20mg of Zyprexa all at night. You know, whatever you have there is always someone who is in worse shoes.

I hope you feel better soon and rid yourself of pain completely.

One last bit, before the fent and hydromorphone I was on Oxycontin 80mg and Oxycodone 30mg and felt better but was very tired all the time. The meds I take now give me energy to actually get out of my house and be able to walk around for up to 3 hours.

Oxy80, I am sorry to hear of your severe pain and other problems. There is something else for termianl cancer pain you might ask your doctor about if you really need it for breakthrough. Its called Brompton's Cocktail, and comes in various forms. It it rarely used anymore, but it can be compounded if necessary.
http://en.wikipedia.org/wiki/Brompton_cocktail

Oxy, I am so sorry to hear about all that you are going through. I will keep you in my thoughts and prayers.

frustrated, I'm glad things are looking up for you. I hope you get the relief you need.
K

This is for both of you.

Thank you all for your responses. Again I'm sorry it's taken me too long to get back here. But it seems I'm being thrown one curve ball after another these last couple weeks.

Oxy80, I'm so sorry to read about all you have to deal with in your life and the pain you have to endure. I totally believe your dealing with that high a level of pain and my prayers are with you that something can be found to make you at least comfortable.

I have searched Fibro specialists and there are none in Iowa, that I could find. But I have found out a co-worker of my DH has a wife with Fibro and she has a good Rhumetoligist. So if I'm not happy with my PM, I'll try him. But my PM does seem willing to work with me so far, so we'll see.
I also have realized that I have something else going on that has probably affected my pain level. I just never made the connection or thought of it until today.
For some time now I've had dental issues, but with everything else going on in my life and money being tight, I've ignored it. Then within this last week, while eating dinner, my back molar broke down to the gum. But it didn't hurt surprisingly, so again I ignored it. Then a couple days later, my legs, feet and face swelled up, but I didn't make the connection at first because my legs and feet were involved. I was instead thinking of all the other possibilities. Finally this morning the light bulb went on and after a little research, I started connecting a lot of dots that I'd been ignoring for the last year.
I'm thinking I have a nasty infection that has probably now gone into my bloodstream because I've been ignoring the symptoms way too long. And that has probably added to my pain level as well throughout my body.
So I'm trying to find a dentist and will make an appointment first thing Monday. Until then I have some antibiotics left over from my DH from a few months ago that I've started taking (it's better than nothing til I can be seen).
And I'm hoping after I get this dealt with, I'll find I don't need as many pain meds as I thought I did.

Thank you and everyone else

It's something to be celebrated in the end and not be sad. I've lived a decent life other than having chronic pain. I can still do mostly anything anyone else can do it just hurts me a lot.

Besides, I know so many people (met most in the hospital) that are way worse off then me. At least I don't have an expiration date and could possibly live for many many years. There's just no way to tell in all certainty.

I'm going to try chemo for the heck of it. It's a chance I'm willing to take.

A few days ago I was also diagnosed with fibro!

I have fibromyalgia, I was diagnosed in 1995; I also have celiac disease -allergy to gluten. I read all kind of info on both diseases and belong to support group. I would say that they often go hand in hand. read up on celiac disease and try going gluten free, it does help a bit with the pain. Any questions, ask away or even PM me. Green tea, and make sure you take vitamin D and calcium too -always consult your doc before as I don't know all the meds you are on but any questions or anytime I can help, I am here for you.

My heart goes out to you. I take care of my sister, who has stage 4 brain cancer. All I can do is say, my thoughts and prayer are with you and I hope you at least can get as much pain relief as possible.

Thank you, it means so much to me that people show their kindness toward me. I wish you and your family nothing but the best wishes possible. God bless you and yours

And why shouldn't we? No one and I mean NO ONE especially someone with Cancer should have to endure chronic and/or debilitating pain.

*We're all adults (or at least on this board I'm assuming we are).

*We can go by all the booze we can afford and go home and give ourselves alcohol poisoning if we're stupid enough (or in that much pain) to drink that much.

*We can go out to a bar and (hopefully with common sense) drink ourselves silly.

*We can volunteer go to war and DIE for our country!

And....

* We can walk into a polling place and VOTE for our elected officials.

But gawd forbid we ever end up with chronic and/or debilitating pain, because.......

WE CANNOT CHOOSE OUR OWN COURSE OF TREATMENT, IF THAT TREATMENT IS A NARCOTIC PAIN MEDICATION, because of the laws that those, ELECTED OFFICIALS, that WE ELECTED, passed without allowing ALL OF US a vote on it! Instead they took it upon themselves to pass these asinine laws based on a FEW crybabies who won't/can't take responsibility for their own actions, instead of asking the MANY of us who are perfectly capable and willing to not only take that responsibility, but are perfectly capable of make our own GROWN UP CHOICES!
WE DON'T NEED PARENTS! WE JUST NEED A VOICE AND A FAIR VOTE!

Sorry, I just needed to rant.

Oxy, I'm sorry to hear about your cancer. What I'm really sorry about was when you said you have a pain level of 6/7 constantly! As a nurse it makes me believe your MD's could be managing your pain a lot better, a 7 is unacceptable! IMO there is absolutely no reason why a terminally ill patient should be in so much pain. Esp with all the available pain med choices. I feel its cruel treatment. Sometimes it seems as if our society treats our animals better than we treat our terminally ill and chronic painers.
Can't they increase your meds or give you a PCA pump or something?
Anyway, my thoughts are with you, and I'm sorry you're going through this.

You're all so nice

In defense of my doctor(s) they are trying their best to keep my pain tolerable. They are willing to write me endless scripts but I can't afford them. My Doctor even said he'd script my fent. patches every 2 days instead of three but my insurance won't cover it and I'm unemployed. They've offered me so much but my insurance is so crummy they only cover partial pain meds and not the amount my doctor will write.

So I don't put any blame on my doctors. On my last visit he did bring up some morphine pump machine that get's implanted in you (as I understand it) and I might take him up on that but I'm afraid of becoming addicted. I could live several more years and I'd hate to be so doped up I couldn't enjoy anything but the medication. I have an 11 year old daughter and I need to be able to be with her as much as possible.

Right now, they have me on 10 patches a month, 120 hydromorphone 4mg pills, 60 Oxycontin 80mg and 90 30mg oxycodone. So they are trying their best, I'm just very tolerant and usually don't take even half of what I'm scripted. I can't afford to fill all the scripts so there's No sense to take all of them if in the end I still have pain.

But my best pain reliever is drugbuyers.com. It's a huge part of my life. I spend a good portion of my day here reading and reading. I respect so many people here because they're so knowledgeable and uplifting. I try to help where I can, because it's in my nature to be helpful.



My doctor says I'm my own worst enemy for not taking all of the meds I'm scripted. I tell him I'm a victim of the system...

being worried about becoming addicted to the "pump" is the least of your concerns. you are ALREADY PHYSICALLY addicted or dependent as they say.
The pump injects tiny amounts of morphine or some other drug directly into the damaged area. it used 100 times LESS medicine that a pill does. because the meds are injected only to the damaged area, the rest of the body is not exposed to the medication. very very little, if any.

That laundry list that you take now, you will have a heck of a time just quitting that. you're caught my friend. you can't quit, but you can;t live without either.

welcome to my world. Most of us here would quit IF we could. There is no fun in these drugs when there is an ever present pain that kinda takes all the fun out of it. I have been on such high doses of opiate meds that would kill a horse, but they did'nt even make me yawn.

Opiate therapys are one way streets. Once you start to travel that road, there is no coming back if you do not like what you see. The ONLY way back is back the way you came, thru your doctor. and if you do make it back in one piece, then there is always the pain thats ever present.

The simple question that many of us ask ourselves every morning....
...what do I do now?
It's a trap. if you fall in you MAY find comfort. If you tiptoe around it as long as you can, you'll eventually stumble and fall in. But once you have been cursed with chronic pain, theres no way out.

Use what they give you and be thankful. most would be lucky to get half that. Be thankful that you have a dr thats at l;east willing to treat your condition. Too many members here get told to "suck it up" and learn to handle it.
It sounds to me like your dr is on your side for now. MY advice would be to keep him there as long as you possibly can and do what he ask of you. You;re more fortunate than you think.
good luck.
"

Hi Oxy, I'm sorry to hear about what you are going through. I hope you will always be able to get the proper care you deserve.

You mentioned that you are having problems with your stomach - not sure if that's because of the type of cancer you have or not. If it isn't, you might want to look into whether or not the Zyprexa is causing you problems.

My sister took Zyprexa for a short period of time a few years ago and it really messed up her stomach/digestion. She ended up with a condition called Gastroparesis (where the nerve doesn't signal the stomach to empty after eating). This is a condition that usually is associated with diabetes - which Zyprexa has been known to cause.

Oxy,
For what it's worth, my sister is a diabetic and finally got one of those "insulin pumps". She says it does not hurt at all and makes her life much easier than giving herself shots.
Don't know what they cost, because she is on Medicare.

As for addiction, I had an Aunt who was given 3 months to live and put on morphine.
But my Aunt was a tough old bird and lived 3 more years and even got off morphine, with no withdrawal.
Something about people in pain not becoming addicted like those who are just using for recreation ? Dunno ?

Wish you the best and wish you could get on Medicare, or some program to help with cost ?

Regards

I suppose it's true that I shouldn't worry about side effects like addiction. But there is the reality of costs of medicine which is just killing my family. This month I only filled 2 of my scripts, the other 4 I didn't.

If money was no object I'd take them all, but it's just not practical at this point.

I do have a positive reaction to my mental meds, I sleep very well. That really was a killer when I couldn't sleep. I tried all sorts of things to help me sleep and finally I broke a 2mg xanax in half and took just the half and bingo, I sleep great now. I leave the other half of the xanax by my bedside and take it only if I wake in the middle of the night. That's only happened a couple of times. I would never have imagined xanax would cause me to not sleep.

That's true there is no way out for me, except death. I hope to live as long as possible but I'm prepared for whatever is in store for me.

God bless you all

Oxy, I hate Insurance Companies. There are a lot of meds I take that thay no longer cover. I am lucky that they do cover my pain meds. I used the patch for about 5 years and could not believe the price of them. I was on 150 mcgs every 2 days. My PMD decided I needed to taper off the patch and switched me to Oxycontin with Roxycodone for b/t. I still have a 6-8 pain level. I am going to ask him to raise me 1 more Roxycodone. I too was worried when I first started taking pain meds, but I knew if I wanted a somewhat decent life, I had to take them.

Wishing you all the best. I will continue to keep you in my thoughts and prayers.
K

I thought 100mcg was the strongest patch made?

Thanks for those positive feelings, they help me as much as any med. I really mean that.

I wore a 100 and a 50 together. You're welcome. If you don't keep a positive attitude, it will wear you down.
K

Have you checked in to any of those program the pharmaceutical companies have to provide free or low costs meds? I don't know what it takes to be eligible for their program but if you haven't already looked into it, it might be worth your while.

Oxy, I know what you mean about the comfort the board gives.Just knowing that there is a group of people experiencing similar issues has helped me more than I would have expected.The kindness I have been shown is amazing too. A few people haven't been all that nice as I am the dreaded Newbie, but for the most part unbelievably helpful. I have found low cost pharm help on this site, but many of these have criteria that is too limiting for most, like job loss after Jan1 etc. Anyway, I am so glad you are here for mental pain relief and your good attitude and energy rings loud and clear. Thank you and I so appreciate your strength.

I only hope that you have now found a decent Pain management guy, good doctors for this illness are hard to find any where in the developed world. I am so luck with my GP who knew nothing of this illness when it flared up again after 6 years of remission she has learned a lot from me as I take her in papers that I find and suggest websites for doctors to help her she now has several patients with the same condition and is able to spot it quickly at an early stage so her patients get the right advice right at the beginning. She is also good enough to see me every 4 weeks as I have periods of being suicidal on occasions; this means she can keep a close eye on my mental health. Since my mother died in December neither of my brothers keep a close tab on me so if I did take my own life no one would notice for several weeks, and I would hate that to happen. So if I do decide to go down that route I will go and stay in an hotel room for one night leaving a note and all the information that would be needed for contacts, and leave on the coffee table all the stuff needed to wind up my estate. Sound morbid, but sometimes the quality of my life is so poor that I think that it is not worth going on. Anyhow my mother’s estate has not been wound up yet I am an executor to her will and have to stay here to see that through.

The fact that you do not know how you are going to be when you wake up in the morning, also that tasks take far longer to do due the symptoms of this illness, the fact you wake to pain, poor memory function, blurred vision. What time of day it is. These are ones that come off the to of my head. I am going through a bad patch at the moment due to overdoing it in the first three days of this week, I have been ill for 13 and half years and should know better.

Fortunately we are having a long weekend with no one going back to work until Tuesday, so long as I take it easy until then I should be in a better state for what is arranged for next week. I have finally got the social work department to let me have a home help, this has taken 5 months and for two weeks I will have two home helps coming in for an hour every day to get rid of the piles of paperwork, and other clutter and do some much needed cleaning and ironing.

I made a cardinal error with my PM and now find myself without any medical care.
I guess when I saw him, I missed the part about calling their office asap if anything changed. Well I had just filled my script and suddenly had a back molar break to the gum, followed by an infection in my bloodstream from ignoring the tooth too long, causing my legs and feet to swell up like balloons. But at first, I didn't even consider it could be from an infection. My first thought was, "What's new in my life?" And the only new things were the scripts he'd given me, so I stopped them. A couple days later I realized it was an infection and started on antibiotics. I also increased my pain meds by only 1/2 of a tablet each dose, but that added 2 additional pills a day total. And when I was finally able to contact them and asked for a refill, I was dropped as a patient because I asked early.
Now if your wondering why I didn't contact them that first day, or even in a couple days, it's gonna sound really stupid.
My husband who many of you may remember also suffers with CP from DDD, a fused neck and Avascular Necrosis which he had a total hip replacement for a year ago.
Anyway, he had just started a 3 week graveyard shift to cover someones vacation (he has to now cover any shift they ask, but he still has a job after their recent layoffs). And he was having such a hard time sleeping as it was, I didn't want anyone calling here because the phone would wake him and it cannot be turned off or unplugged because of how it's attached to the wall (don't ask ) and the lowest ring was still too loud. And you can't just call the PM, you have to leave a message and wait for a call back.
So I was doing what I always do, putting everyone's needs before my own. And now I'm paying for it.

So I've been searching ever since for another doctor, but because I saw this one, no one else is willing to see me.

You are so right about this. I've seen my regular doctor, a rheumatologist and a pain specialist and the only one who gave me narcotics was my regular doctor. I was diagnosed last year and trust me when I say it's been one of the longest, most painful years of my life. My doctor says I have the worst case she's ever seen. For me it's kind of easy to get bummed out and feel pretty worthless sometimes (despite the fact that it's not my fault) because I'm so exhausted and in pain most of the time. It also affects my appetite and eating, too. Either that, or it's all of the meds I have to take. I wouldn't wish this on anyone, that's for sure!

I've had fibro for over 25 yrs & I find it very progressive although docs say no. In the beginning I only had slight aching & went through an awful depression because back then they said it was all in my head as I steadily got worse. Now I have days I cannot walk at all. Anyone else experience more symptoms & worsening with time?

I've only had it for about a year and it seems to get worse all of the time. I shudder to think what the future holds for me, but I not to think about it.

Oxy, I just wanted to let you know that I have an implanted intrathecal pump and it has been a godsend. As Eluded posted, the meds do not go through all of your organs and very little is needed compared to your oral dose. One of the biggest upsides to it is that since it doesn't go through all of your organs and straight into the CSF, there is very little, if any, opiate drowsiness.

It has dramatically increased the quality of my life and functioning, and I would be more than happy to tell you more about my experiences with it if you'd like. I have discussed the pros and cons with many potential pump candidates at my PM clinic; it helps them make the decision whether or not to have it implanted, which is feedback that I wished I had access to when I had mine implanted 10 years ago.

Even if you are still in doubt, consider having the "trial" done with you doc to see if you are even a good candidate for it. They will insert an epidural inpatient and deliver morphine or fent to see if it is even effective for you. They usually consider a 50% or more reduction in pain successful, so if you don't get that much benefit they won't implant it anyway. It is probably worth trying to see if it's suitable for you as it could really improve your quality of life.

I don't even know how this stuff about cancer got into a fibromyalgia topic. However, my sincerest sympathies, Oxy, and you are in my prayers. You've been a good source of information since I started on this board and I've always liked you. Keep your chin up, friend.

Personally, for me, Fibromyalgia WAS progressive because I LET IT get progressive. It's a very manageable illness, if you do it correctly. Pain meds only mask your pain - they don't get rid of it. What lowers your pain is eating right, not smoking, no or very little caffeine (can't help it in green tea!), give up soda and start drinking water, stretch stretch stretch, use hot pads, hot rice or corn bags, ice, hot showers, get a massage, go to a chiropractor (if that's your thing), get some accupuncture, get some body work done, start going for walks, basically make sure your muscles are getting as much oxygen as you can pump into them. I feel 100% better than I did 10 years ago just by taking myself off a few meds and making some changes in my life. Realize that YOU are in control of Fibromyalgia - it does NOT control you!!!

Actually, recent genetic expression research show that there are 7 different subtypes of fibromyalgia, each one of which is a distict clinical syndrome. Some subtypes are much more severe than others and with differnt clusters of symptoms.

I only mention this because sometimes when people figure out what works for their fibromyalga, they sort of assume that what works for them should work for everybody else. However, we now know it can be much more complicated than that.

Still, I like the advice you give -- most of it is stuff that is likely to provide some improvement to others. But some people are going to have to do other things than what you did, maybe take a variety of meds on top of that, and still not do as well as you have, especially if they have a very severe subtype.

Mark I agree. I have always said each person is not the same and their thresh hold for pain is also not the same. I have a very low threshhold but will hold out on taking anything real strong until I need to. But I heal failry quickly. I find when I am very stressed I will flare up. I have been dealing with this for years. Back when I fist started trying to be diagnosed, they would give you paxil took two pills and my tounge swelled. I told the Reumy I would rather be in pain. I am not taking anything like that ever again. It is very hard even today to find a doctor who treats it seriously

Hi all,
I just stumbled upon this thread and thought I'd comment. I agree with the last two posters. Fibro is so poorly understood, even though the FDA has approved Lyrica and Cymbalta and Savella is on its way. However, Cymbalta and Savella are just anti-depressants and help some CP pain patients because of the link between depression and pain. I was on Lyrica but my old total @ss PM doc, who knew nothing about FM, abruptly took me off Lyrica due to blurry vision (which is a common side effect of that med) and even after a brain MRI and thorough eye exam and then the go ahead from the opthamologist and neurologist, decided he would not refill it. My rheumy was originally the one to write for it, and I went to this PM doc to toe the line with one doc/one pharmacy. This so called doctor, who ignores the "first, do no harm" part of his oath, also pumped me full of steroids, which I told him I was allergic to. He injected it into my spine anyway and charged my insurance company over 10k for the 7 minutes it took him to do so. He billed us for a 2500.00 deductible which we are currently disputing. ( he claims he injected both sides, when he actually only injected one side. I know this for a fact.) Did I mention that he submitted to my ins. co. that I had a herniated disk, which I do not?

Anyway, when he yanked me off Lyrica within days, I became very sick. The Cymbalta was worse. At the recommended dose, I was still in pain and couldn't think straight. I would stare into space and had problems understanding what people were saying. When I told him about this, he actually upped my dose OVER the max dosage for that med. By the time I saw my rheumy, (I generally see the PA there and prefer it) I was a mess. When she asked if I had ever taken Oxycodone for pain, I could not place what that med even was, although I do know what it is. She had to repeat "Percocet" a few times. I had a total body tremor. I looked like and acted like a junkie, and it was just the Cymbalta!

The PA called the doctor into the room and he's not always the nicest person. He spoke to me for a minute, then they both left the room. He denied the percocet and really, how could I blame him? I looked like I was an addict in withdrawals. He did yank the cymbalta with no tapering, because he gave me the benefit of the doubt and told the PA this COULD be an atypical reaction to it, and the dose was outrageous anyway, and he was afraid I could end up seriously ill. But just in case, no percocet. Gave me back the Lyrica, refilled my Norco (4 per day, stingy), refilled my Xanax. Then, he stopped back in the exam room and told me that those shots the PM doc gave me, in his opinion, are useless for Fibro and arthritis. He believed my severe spine pain was not even coming from the arthritis. When he 1st saw me for pain, my muscles were palpable knots and they did get better and the pain less while on Lyrica. Asked why the PM doc anyway? Well my GP won't write for narcotics on a long term basis for anyone, which is why he suggested I see a specialist. (Thanks DEA!) The rheumy knows I am bone on bone in many areas and had no problems writing for norco etc...and why didn't I ask them to begin with? Well because I hate feeling like a drug seeker. I HATE asking for narcotics from any doc. My GP is one of two docs I have that I can talk to candidly. My dentist is great too. But I have a history with those guys. If they don't know you, unfortunately, they see a neon sign with DrugSeeker written over your head if you dare to even mention it!

That's my horror story regarding seeing a PM doc...but now onto the fact that not everyone with FM responds to the same treatment. Not everyone has the same severity, symptoms or level of pain. Right now, my main problem is total exhaustion. Some days are better than others. It can get so bad that getting out of bed after 8 hours of sleep seems impossible. My pain is much better on Lyrica and that med for is a Godsend, but it doesn't work for everyone. Thing is, when I 1st took it, I HATED it. I talked to my GP and told him how much I hated it. I felt drunk. My vision was very blurry. It changed my pain (hard to explain) but it didn't take it away. He begged me to please stay on it for 30 days. Glad I did, because then the drunk feeling stopped and the pain eventually went down a LOT. His rule of thumb, backed up by the pharmacist, generally give a maintenance med 30 days as it takes your body that long to acclimate. (Unless your side effects are dangerous or you are so sick, you can't function, of course) With Lyrica, you have to build up slowly over a week, as well. Taking 300mg a day to start, and yeah, you are going to feel it.

At this time, there is so much that is not known about FM. I was diagnosed back in 2004 as having "myofacial (sp?) pain" and the neuro told me to see a therapist about getting a myofacial release. Basically, what myofacial pain is, is muscle, tendon pain, ligament pain of unknown origin. That term is not used anymore, at least around here. Myofacial release by the way, is basically massage and manipulation. Most docs here had never heard of FM and at one time my GP said he didn't know if it was a "real" illness or not. All I knew is that I felt like I'd been hit by a car when I woke up...every single day. I was also so exhausted I wanted to cry. The exhaustion is still hard because there are no FDA approved meds for treating that in FM patients. Ritalin et al will work, but nobody here will write for it. They will write for Provigil, but try getting your ins. co, to pay 11.00 per pill! Their excuse is that it's not FDA approved for FM or CFS, only narcolepsy or sleep apnea. I can only afford 5 tabs per month! My doctor tried to appeal and their response was write for Ritalin. Of course, that was a no go. Even though it would help, they freely write it for kids and adults with ADHD, they won't give it to FM patients!

Besides the pain in at least 11 out of 18 tender points which must be bilateral, some of symptoms of FM CAN include fatigue, poor sleep, RLS, anxiety, depression, IBS, Reynaud's, intolerance to cold and or heat, memory problems (fibro fog), incontinence, migraines, inability to make decisions, being unable to find words while conversing, muscle cramps, spasms and twitches, stinging/burning/numbness and other sensations on the extremities, vision problems, other neurological problems. There are even more, believe it or not but not going to go get the fibro book my rheumy wrote (yes, he conducts clinical trials all the time) and list them all. Of course not every one will get every single symptom. Some have a mild case which is very manageable and they go to work every day and live their lives, while others are almost totally disabled. Most, believe it or not, get better to some degree over the years. Some don't, some get worse. There seems to be a link between FM and CFS and osteo-arthritis as well as many auto-immune diseases such as RA, Lupus, Sjorjens (sp?), etc...from what I have read recently, they are making a link between FM and celiac.

I've tried to eliminate all caffeine. No change after 1 year. I eliminated all processed sugar and simple carbs, no change after 6 months. I did the Green Tea thing, along with organic foods and even very expensive but guaranteed to be 99% pure, vitamins, fish oil supplements and some organic herb concoction from a so called FM specialist. My skin looked better, but that's about it. I hate water, but did the 8 glasses of spring water a day thing for months. Again, my skin looked better and my throat was always less dry, but no change on the FM. (My doc recently told me the old 8 glasses of water a day is a myth. You do get water from other sources such as fruits and veggies. Just make sure you stay hydrated) Giving up smoking is just good all the way around, but no study has shown it helps with FM. One poster mentioned heat or ice. To me, ice=severe pain! I can't use ice, ever. Exercise IS a good thing and it has shown in numerous studies to help, but gentle stretching, yoga, walking, swimming seem to be the most helpful, esp. when just starting out with exercising. So again, what works for one patient may not work at all or even make it worse in another.

I'm not a know it all on FM by any means. I just feel I have been forced to take as much charge of my health as I can, so I found out as much as I could about this disease and keep up with the recent studies. Now most will call this a "disorder" but my oncologist has had a special interest in this, and he firmly believes this is not a disorder, but a disease, probably auto-immune. He feels that they will eventually find a definitive lab test used to diagnose. Right now there seems to be some sort of protein I believe, called Substance P that is usually elevated in the spinal fluid of FM and CFS patients, and that could be a huge clue. What most do believe right now is that the nerves that transmit pain in the FM patient fire continuously/abnormally for whatever reason, which is why we hurt so much. We have a lower pain threshold than the average bear.

Sorry for the long post. Maybe it will be of some help to a newly diagnosed FM patient, or give any FM patient some hope that if one treatment doesn't work at all, maybe another one will.

Forgot to mention my latest....trying gluten free. Too soon to tell but anyone ever try gluten free rice bread? It's truly AWFUL. It falls apart in your mouth with the consistency of moist wallpaper paste, mixed with sand. I am gagging on it. Anyone know of a gluten free bread product that doesn't taste like cr@p?

Trying gluten free because I have the symptoms of celiac disease but my moronic GI doctor only ran one celiac blood test (you are supposed to run four) and for the 2nd time in a year when I had serious GI bleeds and he had to scope me, he only biopsied my stomach for H Pylori. You can't diag celiac with a stomach biopsy and can't use an endoscope as you need to get into the small intestine. This is a good example of why I am beginning to lose faith in doctors.

frustrated62:
Sorry to hear about the diagnose.
It's tough living with it, my mom had the diagnose in the mid 90's and I seen how it affected her.

Stay strong and be well!

danegal:
Sound almost like my mother. Almost same happend to her.

But it ain't as bad for my aunt.
She was diagnosed cancer some year ago and been fighting it and looks like she's doing well at the moment.

I wish you and your family all the best!

Glad that your aunt is doing better.

And to the OP, sorry for the news. My mother has F.M. and I know it can be very tough. Hang in there.