Good News For Fibromyalgia Sufferers

I wonder if it will work on my cats?

Alas, while Lyrica worked for me to some extent, my vision was becoming blurry. So that had to stop. So, I take other things…and none of the regular ones are opoids.I’ve learned the hard way. If the pain’s in the nerves, not many of the darvons, percodans, vicodins will do a dang thing. Meanwhile, the ones who abuse them are making it harder for those who really do respond to them as pain relievers.Medication should never be recreation.That’s my rant for the day. Thank you.

Hmmm . . . no clinical test to diagnose? Kind of sounds like my clinical depression, which is mostly diagnosed by the patient and then treated by the doc. For example (<>simplified a bit<>):<>ME:<> I’m depressed, doc!<>DOC:<> So you feel bad and lost your appetite?<>ME:<> Yep.<>DOC:<> You suicidal or homicidal?<>ME:<> Nope.<>DOC:<> Okay, take this Rx to the nearest pharmacy for <>your very own stash of Prozac!<><>ME:<> Oh, thank you! <>I’m starting to feel better already!<>Do you think the Cletuses (<>I appologise if your name happens to be Cletus and you are a productive member of society<>) of the world might use depression as an easy way to get ‘zac? Because you do fly if you pour copious amounts of whiskey into a Prozac-enriched brain! Nah–probably not–the “<>fibro sufferers<>” are looking for a quick fix on narcotics. The Prozac-whiskey thing takes a month to build up!

So Nancy, what DOES work for you? What meds? Lifestyle changes or exercise? Is there a particular time of day or activity that makes your symptoms worse? I really would like to know.While it may seem as if I don’t believe in fibromyalgia, that isn’t necessarily the case. I’m willing to accept that some fibro sufferers are in pain, I’m just VERY skeptical of the diagnosis in the people I encounter who can tell me the narcotic and dose to use that works best for them.So how do you manage your symptoms?

Good Tuesday morning to you, AD !Ha-ha-ha ! Is there a COWMAS convention in a city near you ? We get quite a few of the attendees in our E.R. !I don’t know of a single fibromyalgia sufferer who eats healthy, exercises regularly, has a good mental attitude, and is a hard worker…I do know fibromyalgia sufferers who have victim mentalities, love drama and attention, are lazy, depressed, shop frequently to alleviate their unhappiness and complain incessantly.Not that I’m assuming any of this “disease” isn’t their imagination. I’m just saying what I’ve seen.

“I don’t know of a single fibromyalgia sufferer who eats healthy, exercises regularly, has a good mental attitude, and is a hard worker…”I know about 300 of them at a mailing list I run, so what’s your point?We have a mix of illnesses on the list, although it’s mostly fibro. (I myself do not have fibro, so it’s easier to stay objective; I HAD lyme, but I think I might have kicked the damn bugs out of my system finally). If you want a list that mostly says, “Yup, I’m sick. Now how do I keep living my life?” you might like FlyingWithFibro: http://health.groups.yahoo.com/group/flyingwithfibro/ . Many on the list are excited about Lyrica, but others have tried it and it hasn’t worked; I believe blurry vision was the problem for them as well. Other popular meds include Cymbalta for sleep, zanaflex and other muscle relaxants, Ultram, etc. There were a lot of people upset when Vioxx was pulled because it worked, and those taking it knew they had to watch out their hearts. Very few are on opiates, although there are some. I don’t remember if those are the “pure” fibro people.

Well, I am willing to take some abuse on this subject so here is my input.I am a 41 y.o. male with a history of personal injury induced by an abundance of testosterone. From the age of 18 I averaged 80 work hours per week. Full time job plus lots of side jobs. I loved to work and it was my “thing”. The only time you will find me in the ER is after my wife demands to see what I have covered up with a piece of duct tape.5 years ago I began to have all over aches and pain that slowed me down. Lots and lots of tests showed nothing wrong. 4 years ago I was tagged with Fibro, the diagnoses of exception. I think it just made billing the insurance easier.I tried numerous prescribed drugs before reaching the current mix. I am currently under the care of a physical rehab/pain management specialist. She has done some pretty amazing things with just physical rehab. A bulging disc at L5-S1 that was scheduled for removal was relieved with a pelvic adjustment. A few other minor issues were resolved with some physical therapy. So here is my daily intake of drugs.Requip 1.5mg daily for RLS and used off label to help achieve stage 4 sleep. Works great on RLS, no significant gain in deep sleep.Kadian 30mg every 12 hours. Started low and worked up to this dose. Improvement in quality of life was dramatic. I have been at this level for almost a year now. Cymbalta 30mg 1x daily. According to the Doc, men who have high levels of pain for extended periods of time have lower levels of Seretonin and Nor-epinephrine. High levels of pain cause testosterone levels to drop, which lowers Seretonin and Nor-epinephrine. Testosterone helps control pain transmission in men. When these 3 things are brought back to normal there is the added benefit of a better mental outlook. Have had great results from this drug. Yes my testosterone tested very low on the normal scale. From what I have read, Lyrica works better on women than men and Cymbalta is better for men than women.Flexeril 10mg at bedtime. Along with the RLS, I have muscle cramping at night. As a tried and proved muscle relaxer, it does its’ thing well.The worst pain is in the morning when trying to get out of bed. Until I started the Cymbalta, it would take 3-4 hours to work out all of the aches and pains. That dropped it to about 2 hours. I started doing my low back exercises before getting out of bed and it relieved most of the pain and stiffness.My main issue is sensitivity to pain. Things that would not have been enough to get my attention 10 years ago, will register as 5-6 on the pain scale. I have always had a high pain threshold, so this has been the most confusing symptom.There is more and more research coming out that supports that there are neurological issues found in many people who have the Fibro diagnoses. I believe that there will be “disorders” that will be split off from Fibro as research continues.So is Fibro real? Yes, but I think it is a stop gap that gives a title to symptoms not understood yet. This is hardly something new, it seems like there is a subset of some disease found every month. Is the diagnoses abused? Hell yes! I have no doubt that Dr’s. use it to give the chronically ailing something to wail about. I have 3 nephews diagnosed with ADHD. In the case of my nephews it is bad parenting, not a medical issue. It is easier to drug them, than actually be a parent and not the child’s buddy.I walk and exercise everyday. If I don’t for a few days I definitely feel worse. I will admit that I had about a 12 month vegetable period. How can doing something like exercise, that hurts so much to do, help me control pain? I agree with you, AD, that at some point people need to cowboy up and address the underlying issue. To my knowledge there is not a non- fatal pill that will cure a victim mentality. But, as long as society provides “victim” support structures by way of entitlement programs I do not see any improvements in the near future.

I’ve been reading you for a while now. I have to tell you, the post entitled “Grief Sponge” made me AND my ex-wife bawl our eyes out. We lost a baby at birth who would have turned 21 June 19. You are a great writer.As for Fibromyalgia, my girlfriend suffers from Lupus and I understand the pain from that is very much like Fibro. I, too, understand that many people have the “victim” mentality and abuse the diagnosis. That is just a shame against society. I also understand that people have extreme pain and sometimes there is no diagnosis that can be readily made. I don’t know what my point is here. I just think that if they made it easier to test promising drugs and limit the liability for drug manufacturers that there would be a lot more drugs available for people that suffer chronic pain. I don’t mean make drug companies blameless for serious harm their drugs cause. But if anyone that gets a nosebleed can blame asprin, or a six hour erection from taking Viagra with a few martinis can sue Bayer or Phizer, there are people that will.I appreciate your service … and your writing. Keep up the good work. By the way, I work at the public affairs office at Fort Polk, La. but lived for 12 years in Lake Charles. I’d like to know where you are in the Bayou State. My e-mail address is tommy@tommysdarkside.com if you feel comfortable letting me know. Laters.

I answered AD’s question in an email..but for anyone who’s curious….I have bilateral radiculopathy (mild and chronic). I’ve found the easiest way to explain it to non medical people is to tell them that some extra bone bruised my spinal chord.I deal with pain by conserving energy, and by ignoring it when I have to. Opoids don’t address the nerve damage pain, but if the rest of my body gets out of whack because I’ve been doing things usually handled by some muscles..who don’t work all the time…with other muscles that aren’t really meant to do that task, then and only then will I take a pain pill.I miss doing outdoor things, and I’m going to find a way to get back to some of them. I’ve been able to keep working in a tutoring center, (am now retired teacher with disability), garden and make a pest of myself online.Y’all have fun. Just—-not with drugs please.

A good friend of mine was diagnosed with fibro years ago … she found the best way to get through a flare-up is exercise. She goes running to beat the pain. She eats a healthy diet and is very fit. I always mention her and her methods to the fibro patients in the ER. I’m glad it works for her.

Hey, AD, I read in a previous post that you would like to answer questions to EMS related stuff — hope you are still interested . . . so my question is: there seems to be a wide disparity among EMS providers on what get spinal precautions and what doesn’t. What is your “rule book”?

AD, I gotta say that I appreciate this post from you. I had read through some of your previous fibro-related posts and a few irked me, but I also understood that the people you deal with are the people with “fibromyalgia” as a hobby. The posts that you made on quality pain control offset a good bit of my annoyance. I won’t say that I suffer from fibro, since that gives the condition too much control over my life. I have fibromyalgia, and I do suffer most days, but I firmly believe that your outlook on your condition(s) play a vital role in your ability to cope with said condition(s). In one of your posts that I read, you said “Pain only lasts a little while, and bruises fade, but regret lasts a lifetime.” While the first part isn’t *quite* right for me, the sentiment struck home enough that I use it as my .sig. (Bless you for being the kind of father who teaches his daughter that she is more than her illness and that <>living<> life is what living life is about.)My worst times are first thing in the morning and right around dinner time, likely because it’s right after work – 8 hours of doing pretty much the same thing over and over again.I’m one of the rare people with fibro who has had it since very young. I was diagnosed shortly after I turned 21, after displaying the symptoms for most of my life. I’m 30 now. My aunt (not related by blood) and several other relatives, also have fibro and pushed me to get a diagnosis and treatment. After I went through all the “normal” things that you rule out before getting a fibro dx, I insisted on some additional tests. It’s not something that anyone in their right mind wants to have… I used to say I’d never wish fibro on anyone, but I’m starting to wish it on some of the drug-seekers who have made it so difficult for people with chronic pain to get real treatment and for attaching the social stigma to the medications that we need in order to function in our day-to-day lives. A lot of people who COULD be helped by taking narcotics will not because of the stigma. Thanks, COWMAS sufferers. My friend with MD really holds off on taking her pain medication because of the way that our society views ANYONE who is on a narcotic.My uncle works for a fibro clinic in Indianapolis that uses a mix of eastern and western treatment styles, so I have a great resource for information and emerging treatment options. This lets me discuss more options with my doctors and sometimes provides them with new ideas for using with other patients.I’ve never had any relief from any of the NSAIDs and have an inverse reaction to all of the anti-depressants that I’ve tried, including Lyrica. For the first couple of weeks, I’m ok, but I start getting very depressed. After about two to three months, I start having suicidal ideation, which is NOT normal for me at all. The first set of medications that worked well for me was Ultram, Soma, and Neurontin. I also try to eat well. In addition to the medication that I’m on, I supplement my diet with magnesium and potassium (good for muscle spasms and work very closely together), calcium (helps sleep), plus B vitamins (and iron since it works so closely with so many of the Bs) to help with energy.I also swim, stretch, lift weights and do yoga, plus randomly dance all over the house. Working the core muscles instead of the surface muscles really helps, as does mixing up the exercises to work the muscles in different ways. And I take extra time to take care of me and do things that relieve my stress. Sing, write, bubble bath, whatever. My me-time is vital. Stress impacts fibro on such a basic level that you have to do something to reduce stress.I fought like mad with my pain doc when he wanted to move me onto narcotics, but I had been on Ultram for 6.5 years and couldn’t safely increase my dose. Now, I’m on methadone, zanaflex, and topamax. I also get trigger point injections anywhere from once a week to once a month, depending on how I’m doing. I have found that topamax or something similar *really* need to be part of my mix. They cut down my pain levels immensely, help with the RLS/random twitches, decrease some of the fog and improve my quality of sleep (and ability to fall asleep). Neurontin made me very tired, but topamax has increased my energy levels. The pain, I can usually handle, but the fatigue beats me. If my pain levels are kept more level, without me dedicating a lot of mental resources into it, then I’m much less fatigued. If they’re not, I expend a lot of mental energy on daily functioning and “ignoring” the pain. Chronic pain really is a killer.There are quite a few studies that point to a problem with gut motility and nutrient absorption for people with fibro, which makes eating a balanced diet and taking vitamins vital to a successful treatment plan, IMO. It’s really necessary for everyone, but if your body isn’t working right in the first place, you owe it to yourself and your loved ones to take the extra effort to put something good in your mouth. Would you rather go to your child’s play or eat fast food? That’s your choice, in a very real way, if you have fibro.The more recent studies point to an imbalance in Substance P and dopamine. Dopamine and seratonin rise and fall together and work to give you good sleep and keep you from getting depressed. The a/ds force up the dopamine and seratonin levels, which forces Substance P down. If someone with fibro can find an a/d that works for them, they tend to have much better results overall because of this. And, I’ll stress again, eating well will also help with balancing your neurotransmitters. If you don’t eat well, you’re not going to have the building blocks that your body needs to MAKE the dopamine you need to drive your Substance P down.I don’t talk about fibro often, since I’d rather live life than whine about what’s wrong with it. This was quite a bit longer than I intended and sounds a bit like a lecture, but I do tend to get going on things that are important to me.

I was reading through your posts…and wanted to drop a line on here about fibro. Yeah… its a pain in the ass and more often then not a lot of the people with it identify in that way with the condition. Yup, whining, whinging, and more than a little pill popping run rampant with fibro.Its why having it sucks big time. I’m 27, married, run my own business from home, eat rather healthily, work out as I can – although my routines tend to long walks, sparring in a Ren Reenactment group, and digging out in the garden more than spin classes. I think I’m a rather happy person, a tad odd I’ll confess, but happy. I take no pills… other than handfulls of Tylenol and the odd rum and coke. Okay, okay. I also make a mean margarita.Maybe I’m lucky, due to a heart condition and some rather annoying allergies I can’t take most of the commonly prescribed pain killers. Vicodin? Seizers aren’t my idea of fun. One doctor offered scripts for oxy… seemed dumfounded when I simply said I had too much to do to sit around and giggle. Crap, I’m better than a drug dog, the mere smell of weed makes me hurl. Frankly? There are days that if you offered me a choice of cancer or fibro? I’d take the cancer. There are pills. There are treatments. There is a clear plan of what to do, to try. As sick as it sounds? People know you are ill. Being a 6’1 tall Amazonian women who sometimes can’t do more than crawl out of bed confuses people. “But… you LOOK fine!” Yeah, and sometimes I am. And that’s the hard part. The not knowing if I will get through today… or am I gonna be stuck having to have my husband run the bath for me because I can’t turn the damn knob?So. I run around like the proverbial chicken with its head cut off on the good days. I get what needs done, done… and then I get more finished to have ahead for the bad days. I try not to talk about it. I meditate… or try to. Basic Tai Chi, stretch as much as I can… and when the bad days come, I try and keep on. My husband makes me stop and rest more often than I would like… and I’m scared about the future. Have kids AND have fibro? Is it fair? Babies can’t wait for mommy to crawl up the stairs. We’ll have to wait and see.Why the long ramble? I don’t really know. The thought that people who don’t know me think I must be crazy, lazy, whiny, or drug hungry bothers me I guess. Hell. The thought that people with fibro ARE often crazy, lazy, whiny, and drug hungry bothers me too! I’m not a victim of fibro. I have it. I also have a wicked sense of humor, a serious corset obsession, and a good hand for pool. Try and see the individuals. Ignore those who set off the radar as phonies and whiners…. but don’t dismiss an entire group of people because of a word on a medical chart.

“Ignore those who set off the radar as phonies and whiners…. but don’t dismiss an entire group of people because of a word on a medical chart.”I do just that, Jenna. I never dismiss someone because of a word on a medical chart. It’s just that the ones that <>repeatedly<> show up in the ER angling for narcotics <>always<> set off the radar.