Pain Management and Medication Wisdom

It has been my experience with fibromyalgia, having had it since 1996, that pain management involves more than popping a pill in your mouth. While I use a Western medicine approach to treating my pain, I also integrate a holistic approach. Fortunately, this is with the consent and even with the wishes of my physician.

One of the the techniques I've used include speaking with a psychologist who specializes in managing pain. Years ago I participated in a "pain clinic" where this was mandatory. It was the most helpful thing I ever did to reconcile myself to my diagnosis of fibromyalgia. I recently was referred again to a pain psychologist because my pain has increased, but haven't found one that accepts my insurance.

Other techniques I learned through several sources, including the previously mentioned pain clinic, the Arthritis Foundation, the book by Jon Kabat-Zinn, Full Catastrophe Living, and others, are journaling, meditation and focused relaxation on a scheduled basis, and rephrasing or reframing negativing thinking.

I've practiced these more commonly in the past and have resumed practicing them with the help of FibroGuide, a tool from KnowFibro.com. As I said, my pain has increased and I felt the need to reopen my previous relationship with my body and mind. I also do light exercise, but it is very light due to my deconditioning, fatigue, and another chronic, painful condition. However, I have a goal of increasing my endurance and have made strides toward my goal.

Pain management, then, can be said to encompass a total mind-body approach. Medication has its place and purpose, but I don't intend for it to be my sole source of relief.

Abqanna, above, has just brought up such great information and resources and shared her knowledge of process so nicely too!  I wanted to mention that Dr. Chris Young who has a free video on Lumigrate.com is a pain management specialist and we have things in development from him.  I'll put the link to his video here for our reader's convenience.  I highly encourage people to download this and it might take a couple times of watching it even to wrap your had around all that he says, but it is VERY interesting and more about health care reform for all of us to think about on our own and maybe influence the systems around us to change from us out!  www.lumigrate.com/product/health-management-dr-chris-young [7]

I just started takeing "Savella" the newest FDA approved drug for Fibromyalgia. Ive been on the starter pack and off work due to the possible side effects. Seizes are on the list. So far on 12.5mg foe 3 days .Today I started taking 25mg and will increase to 50mg twice a day by the end . So far Im still not sleeping and the RLS is actually getting worse. I called my Gp yesterday and requested Requip until Im up to the final dosage but in return he said no because there may be an interaction. I really hopes this helps although it is yet another drug not approved for most insurances. However doing reaserch on this have found that it is supposed to be a combo of sorts of the Cymbalta and Lyrica and is less costly out of pocket . Wish Me luck and will keep all posted on if this helps .  

I've been on Savella for four weeks now, having worked up to 50mg. twice daily. While I have more energy, especially in the mornings (before I run out of steam), I've seen no improvement with the fibro fog, or with pain. My IBS is worse, and my sleep has been severely affected. Poor sleep has been causing me to crash (well, that, and overdoing things). My NP started me on Lunesta, thinking that if we can regulate my sleep pattern, the pain and fog will improve. I took the first Lunest last night, slept a good solid seven hours, and feel better already. I also increased the Savella to 100mg. a.m. (still 50mg. p.m.), mostly to boost the serotonin effect, as I have to guard against underlying depression. Energy that lasts me longer through the day wouldn't be such a bad thing, either, as long as I can sleep. I suspect that having more energy is contributing to the pain increase-after being largely bedfast this summer, I'm now up and doing again. I'll probably never be back to "normal", but I'm willing to work through side effects (like a tendancy toward constipation, which fires up the IBS pain-gotta get enough fiber and water!), as long as my energy level is this much better. I'm hoping I won't need the Lunesta indefinitely, but even if I do, it's probably less harmful than the Xanax I was taking to sleep (and which really didn't work all that well). Good luck with your medications, and don't give up too easily on the Savella. You might ask your doc if he can give you something for sleep. It could make a world of difference! Cheryl

Cheryl -- NICE JOB.  Thanks. 

As for you and the IBS... please look around on the blogs here for more info on intestinal health.  Consider getting the Food Allergies video, OR the detox and cleanse video.... or both....   And also on the facebook pages for Lumigrate that have to do with fibromyalgia.  Since fall of 2009, there are two: Lumigrate: Fibromyalgia an Lumigrate: Fibromyalgia Health Education and Counseling.  

What I'm wanting you to find is the info about people with certain conditions that psyllium makes worse, and to go to other fiber sources.  A resource about that that came to us in the fall of 2010 in terms of being aware of them and by winter of 2011 they were information contributors, ITC Compounding and Natural Wellness Pharmacy.  They are a very utilized provider for Fibromyalgia and Fatigue Center doctors and many, many others.  Due to their being immersed for so long in the cutting-edge treatments for fibromyalgia and chronic fatigue, they are an amazing resource.  You can hear them in podcasts, where I ask them about their past work in pharmacy (one was in cancer, the other got really into studying the hormone systems) and how they got to be in Colorado (introduction).  Then there's a second podcast that's more geared to the specifics about hormones and what you'd want to know if you have FM/CF.  Podcasts are currently in the topmost forum on the Forums tab or list.  You can also find them in the Nutrition/ Supplementation forum, which is another large area that's for ALL people's interest so not in this section that's specific to fibromyalgia.  

I loved my Lunesta but just went back to Ambien ... need to go pick it up as a matter of fact.  That was due to cost.  

Mardy's note: within a short time on Ambien, my balance was awful and I was really feeling 'off my mark'.  In retrospect, as I update this piece in November of 2012, I reflect on my time on Lunesta and realize it helped get me sleeping better and that lead to a good turning around of things but my personality changed when I was on it, or it might have been a combination of having been BADLY brought off by my previous prescribing provider of a large dose of benzodiazapine, which I've written about elsewhere.  That same provider, who was the one who provided the Lunesta (in samples initially so it was not caught by the pharmacist that I was being taken off of the previous medication the wrong way), when I requested a medication that I'd heard of that might help with the change in behavior/patience I was having, approved and prescribed a medication with the message through his medical assistant that I had to come back in two weeks for a follow up as it was one that could have very bad side effects.  Well, it did, but it was the first days -- I collapsed and couldn't walk until the medication got out of my body, which was almost 48 hours later.  

I'm glad it happened though: I therefore share that experience here at Lumigrate as well.  It goes back to what's on the home page You model: Nobody is going to think things through for you like YOU are.  Read the patient inserts that come with medications.  Do the clinical reasoning FOR your providers and then ASK FOR THEIR ASSISTANCE, and step them through what you're needing them to do.  Why that doctor, an MD, didn't say 'you've been my patient for a long time.  This has never been a problem.  Let's review your medication changes lately -- oh, here, I see I got you onto Lunesta, and a side effect of that is what you're experiencing".  

I no longer go to that doctor, but the odd thing was, he actually fired me for having told a patient that was sitting in the treatment room with me about Lumigrate and pointed out there was an MD on the videos who might have something to offer if the MD we were paying for treatment that day didn't have all the answers.  He was the only provider in a long distance that did the vitamin and mineral IVs that I was using if I started feeling a backslide/pulling down happening.  I'd gone to him and sent many patients to him, including the one I was talking to that day.  His immaturity and lack of professionalism in the way he did it was appauling to me, and the letter he sent me, which is required with terminating a patient, was 'bullying' and black and white evidence of his inappropriate ways.  PARTICULARLY considering the way he'd so badly bungled bringing me off the high dose of benzodiazapine he had recommended and really pushed me to take. Telling a person about another provider is not 'giving medical advise', which he threatened to turn me in for since OTs cannot give medical advise.  I was, as I do here, telling my story of who and what had helped me as a patient with a similar condition.  And then referring to other providers who are qualified to give advise.  

You have a great NP if she is aware that the sleep piece is #1 in importance. 

ALSO, for you Cheryl, look at information here at Lumigrate about hormones ... .. there might be a way to get to your neurotransmitters via hormones if your NP will work with you on learning and trying AND IF YOU think that is what you would want to do. ITC Pharmacy has years of experience guiding medical providers on how to do that... you'll see an area on their website even for how to write a Rx, though there is much more to determining the dose and all that.  They have a NP in house they contract with who can work with people in all states for a very reasonable fee.  They can ship to all states but California, so you have to get creative if you live in California if you want to use ITC as a pharmacy, but the NP can still give the Rx and you can fill it in California, I believe.  

In years past, 2007, I became a patient of Dr. Rollins, and of the legendary Stedman Hawkins neuro-orthopedic spine surgery department, who have a 5 item list they suggest for fibromyalgia, one of which is to take antidepressants.  But I was never able to tolerate any kind of Rx for neurotransmitters, and Dr Rollins educated me that hormones are the building blocks partly, to making neurotransmitters and it was like a magic bullet for my mind.  I can tell if I'm low on testosterone -- I'll feel like I just cannot 'do' what I have ahead of me in the minutes and days/weeks/months to come.  

There are also Rx forms of hormones that are almost like biologically identical and Dr. Andrew Weil has stated in the past he leans in favor of those, but it was due to the inconsistencies of compounding pharmacies.  I actually experienced a goof by a small pharmacy program within a huge well known drugstore and that's why I went and toured at ITC and saw the way they quadruple check things; they have built QA very much into their process.  With thyroid compounds, they do such quantity they can have each batch assessed to see if it's correct before providing it to patients, just the way a bigPharma product is done.  So in the end, my opinion is that if you have a GOOD compounding pharmacist it stands to reason the trade-off to have idential to the biology of your body is worth that little difference from the big 'standardization and testing' of mass produced products. 

Sure like having people who are so knowledgeable posting... this will help people a great deal.  Thanks again and please keep 'em coming if you're reading along! And Print/Email / Post links and tell others about Lumigrate so we can reach more people who need this information.  You can therefore be part of the solution and process.  Thanks in advance!  I'm GRATE-full!  ~~ Mardy

Thank You CHeryl for your insite on the Savella. I too am getting the whole energy serges that r lasting through the night ,driving me crazy but willing to try anything at this point ,at least through the trial . You said It DOESNT help with the fog or the IBS though huh? Great,my 3 biggest things sleep,IBS(losing work) and Fog OMG! Horrible (in the medical field ) no room 4 error.Stay on and let me know how u r since Im 3 wks behind u . Thank u Jennifer 

I will begin taking Savella tomorrow and am scared.  I am hoping I don't get any severe side effects.  This is my last chance at getting some relief.  Nothing else has worked.  Besides my CFS, my throat feels like it is closing, but after seeing several specialist they all attribute everything to Fibro.  I will come back and let everyone know how the Savella is working.

I am a fibromyalgia sufferer and I have recently come across a couple of things that have helped me.  They were both kind of a fluke.  First of all about 2 months ago I had started drinking green tea.  I was drinking it because I liked the taste of it and it was something different for a change.  Well....after a couple of weeks of drinking it I noticed that I had more energy than I normally had.  I was ALWAYS DRAGGING and just couldn't find anything to give me anymore energy.  Coffee never helped, or soda or anything else with caffeine, and if it did help then I would end up awake all that night.  I could drink the green tea all day long, it would wake me up, give me energy, and not mess with my sleep.  It was great.  Now it is a daily thing. 

The second thing I discovered was that I had started working out on the treadmill every day and then doing some weights for my arms and legs.  I was working out to lose some weight and then after about a week my husband asked me how I was feeling, and how my fibro was with working out.  I stopped and thought about it and realized that I had been feeling much better.  I also noticed that when I did the leg weights it REALLY helped with the pain in my lower back, hips and butt.  So now when I start to hurt I just go lift some leg weights.  I only need to do 25 reps or so.  Nothing major.   Oh.....and on the treadmill I'm not doing anything major, just walking.  I really had to force myself to do it in the beginning cuz it was not comfortable, but now it's really not too bad.  I only do it 15 to 20 minutes a day.  I also noticed that it too helped with my energy, and just felt so much better overall.   

So  hopefully this is of some help to those of you out there with fibromyalgia.  I wish I would have decided to do this sooner, now that I have realized how much it has helped me. 

Best of luck to you all in your search for finding something that helps with living with this terrible disease.

I am pretty familiar with the gal who wrote this piece above and most importnatly THANK YOU for taking your time to write here where others can benefit.  

I want to remind everyone that each person has their own 'level' of what is a lot or not a lot and this contributor has a fairly physical vocation so when she thinks that 15-20 minutes on the treadmill isn't a lot, please realize that for HER it's not a lot but that I had many many patients ... many half her age... who started at 2-3 minutes on a treadmill when they first came to me for treatment.  If you go to the facebook page for me (Mardy Ross) and see the photos of me hiking.... that's only in late 2008 I got back to doing hikes like that --- I was building up to that for years.  When I was 29 (20 years ago), I couldn't walk a block at my worst point with the initial chronic fatigue.  We all are 'where we are at' AND each day we need to mostly monitor our feelings and not go by the clock.  Go to being 'tired' but not 'TIRED' and overdone, as that is when you start overtaxing that ever-so-important adrenal - hypothalamus - pituitary axis (which we'll bring you more on with Dr. Rollins' fibromyalgia information we have in development.  Naturally, we recommend you refer to Dr. Teitelbaum www.lumigrate.com/blog/jacob-teitelbaum-md-has-come-fatigued-fantastic [15] AND Dr. James Wilson's Adrenal Fatigue book www.lumigrate.com/blog/tired-all-time-ever-heard-adrenal-fatigue [16]. 

But isn't it SO COOL that she just kind of had these 'fluke' things happen which might be something like 'intuition about yourself'.  That old saying by Dr. Schweitzer that is something about 'within each person is their own best doctor' comes to mind.  Watch out, Dr. Teitelbaum .. there is a new 'Dr. T' in the house!

I started taking Savella August 14th, along with 4 other new meds. I couldnt take Cymbalta because I stayed exhausted and just wanted to sit and do nothing. It does however work as an appetite suppressant ( that part I loved). I take 50 mg twice a day. I will say I have less pain but I also stopped my physical therapy per my neurologists request so I honestly cant say if the Savella helped. I know not going to PT stopped alot of my pain.  I dont seem to have any side effects except dry mouth. I go back to the doctor next month so I will have an update then.  So I have to say as of today, so far so good!  I hope it works for you!

Rhonda, of 9/23/09 -- thanks for writing!  Glad it seems a Rx is working....  I am on many that work for me too.  Hopefully I continue to do 'medication reduction' and even 'supplement reduction' and just have more good that comes from eating, breathing, exercise and ... drinking good, clean water! 

BUT  and I'm all for not 'having to go to PT'... but a GOOD PT shouldn't be making your FM worse.  Makes me Crazy.... I very much cannot wait to get the unit information on here and in our upcoming electronic and paper publications for GOOD PT information.  In the mean time, I do have some good resources I've posted on facebook and I'll put them in a blog so that people without PT benefits or 'beneficial PT' can have something to go by. 

Tonight I talked to a woman in my community who has become disabled because of carpal tunnel and had I not made the decision... which I wrestled with for a long time... to stop my clinical practice (where I employed a brilliant OT assistant who was literally solving carpal tunnel and tennis elbow and all kinds of UE problems) ... we might have become her provider and it might have helped her and he and I were doing some treatments that nobody else in town had ever heard of and I hopefully gave her enough information to go on in the future to have another therapist pick up and 'do' what we were doing...   But the question that went around in my mind was 'what if ALL the good therapists quit .. who will be left to work with patient' and I ultimately decided that if I set Lumigrate up right... so that people 'got it' that they could take the information to THEIR real, live provider like a recipe and say 'help me with this', it would be more effective overall for more people ... way more people.  So to read this tonight reminded me, Rhonda, re-minded me of that concept.  Look for something in the VERY near future in a blog about exercise and FM.  !!  -- Mardy

I was wondering why your neurologist wanted you to stop PT.  I mean what was his rationale for that?

I'm on numerous meds right now but have decreased them slowly.  It's really hard when you have more of a dual diagnosis issue. 

My regimine right now is in the am it's Cymbalta 20mg, Vit. B-12 (helps to detox the liver and increase your energy), Vit. D 2,000 IU (if it's low then i'm put on the normal Vit. D 50,000 IU 2x weekly for 8 weeks), hydrocortisone 10 mg due to my adrenals, Effexor XR 150mg, Prilosec 20 mg BID, Neurontin 900mg at night (really helps the skin sensitivity), Lidoderm patches 12 hrs on/ 12 hrs off, trying to ween off the Soma because it doesn't help anyways...If anyone has had good luck with a muscle relaxer let me know! Requip for RSL, Rozerem 8mg at night (helps with abnormal sleep patterns), and I was just taken off of Elavil because it never worked anyways and was put on Geodon 20mg at night that really helps with sleep!!  I can take 40mg if needed.  I also use Klonopin 2mg. 

Just know that the Lidoderm patches are not that adhesive so you have to apply additional tape!  It really helps the dermal pain but it doesn't get deep enough to help that "deep" pain feeling.

I was weened off of the Methadone and I go back to my Pain Dr. on Monday to see what we are going to plan out for me!

I'm a 17 yr survivor of Fibromyalgia and CFIDS.  Four I was bed fast. I began to do my own research into proper supplements, breathing techniques, removing toxins from my body and chemicals from my life. There is a in article in the Sep. issue of "All About Women" magazine.  concerning my findings. It took me years of research and trial and error to find the things which help with pain, fatigue and brain fog. After Sep. it should be in the archives.  pg 55 or 56 The online version is different than my hard copy. its located at www.aawmag.com [22]   I want you to find your path to feeling stronger and healthier.-- Clarissa

Well I saw my pain doc today...I am off the elavil...I'm weened off the methadone.....and off the soma....he also told me that Lyrica is in the same class of meds as Neurontin....Lyrica didn't work for me....I was put on Neurontin 900 mg....but when he told me about the 2 meds he wants me to ween off the Neurontin because it won't work ( because Lyrica didn't work...Have to ween on Neurontin slowly so down to 600mg for right now....He increased my Cymbalta from 20mg to 60mg everyday....He put me on Baclofen for muscle spasms which is amazing...I feel so much better.....then to help for sleep he put me on Geodon at night....so as of right now i'm doing this and seeing him again in 3 weeks....He wants to put me on Savella...very scared of that 1 but I suppose to give it a try.....so that's what is going on.....will write back when new meds start kicking in......=)            

Does anyone have any issues with bruising easily? All of my meds cause easy bruising. But just lately I have been doing it more?? My blood labs are fine as of June. My neurologist had no idea what to do. Said that it was a side effect of the meds and my labs looked fine. So, I'm going to my general doc for more info- to double check my labs and see if he has any recommendations for vitamins.

Does anyone take any vitamins that work well? And besides the usual iron, platelet count, CBC work-up for my labs...can anyone think of what else I should look for?

Thanks!

I've been on the Savella for almost 4 months now. I am loving it. The energy I get now is so unbelievable compared to how I felt before on Cymbalta. I know a possible side effect is seizures, but it is for Cymbalta too. I have epilepsy, and have never had any seizures on either medication. I have done some research on the Savella, and have found that it takes 6 hours to leave your system, so in order to be able to sleep at night I make sure I take the pm pill at least 5 hours before I want to go to sleep. For me thats about 10 pm, so I take it by 5. And as long as the am pill is taken 6 hours prior to taking the pm pill, you can really take them as you need them to work. Once in a while I forget to take the pm pill, and realize it around 8 or 9 pm, so I skip it so I can sleep, and have had no problems. I am on neurontin in pm for sleeping, and have taken that for 5 years now. I also have the RLS, and making sure I take the pm pill early enough, I don't have a problem with that. I am working part time, going to school, and doing clinical at a hospital, and so far I am able to do it all, and I know before taking the Savella, I would never be able to keep up. I really am so excited about this medication. I know it won't work for everyone, but I think for some, it is worth a try!

Hi Amy,

Most anti-depressants can cause easy bruising, and Cymbalta and Savella both are heavy on the bruising!    I know I'm also at a place where I'm not steady on my feet, so I find myself and walls often making the acquantance of one another.

I would ask to have your Vit. D levels checked on your bloodwork, many of us with fibro have very low Vit D levels.    Also, ask your doctor if having your Vit. K check is worthwhile.   Vit. K plays a role in blood clotting and may help with the bruising.

Good luck!

Aimee

For anyone who is on Cymbalta and Savella, at the same time, please read up on Seratonin Syndrome.    This happens when too much seratonin is in the brain and can be fatal.    I don't think doctors are up on this and I'm seeing more and more people being treated with both of these medications at the same time.

This isn't just a Cymbalta or Savella issue, it's if you are on any seratonin enhancing medications, including supplements or herbals.    Yet another reason to make sure your doctor AND your pharmacist know everything you are taking!

My friendly neighborhood warning of the day!

Take care everyone!

Aimee

Amy and Aimee -- you guys are great!  Everyone is!   About bruising.....

I've not taken any of those drugs you're talking about -- I just cannot take SSRI and NRI drugs, but Dr. Rollins' strategy was to get at the building blocks for the neurotransmitters of the brain through getting the hormones straight.

I wanted to really quickly catch Amy about the bruising issue.  I had a brilliant doctor in the past (who I refer to in a blog from about a month ago, fondly in terms of how much he helped my treatment in the past) and he had read that there are European studies showing that the body knows there are knots in our muscles and the blood is trying to compensate so gets very thin. (This came up in the years when I simply needed a hysterectomy I think, but the fibroid tumors I had were up at the top of the uterus and so shouldn't have been causing the horrendous periods I was having).  

There is a very rarely - done test (the hospital lab tech who is VERY good had to look it up) where they jab your arm at an exact location (I have tiny scars from the two times I've had it done, and they're about two inches distal (away from) the crease of my elbow on the inside surface as I supinate my hand (turn it palm up).  They use a little device much like what they use for blood sugar pokes on the finger with diabetics (in the old days when the fingers were used at least, now some go to the arm, which I think is GREAT).  It's standardized in how deeply it protrudes into your arm, and then they literally just sit there and blot until the bleeding stops with a little disk of cotton like you'd use on your face with astringent!  I can look around for what that is called if we don't get Dr. Rollins and his good memory in here to remind me what that test is called. 

But I wanted to be sure to get that info to you since you have an appointment coming up, Amy.. and I hope it's informative for lots of people to read.  It's one of those little caveats of all my history that maybe was just ME and maybe it's something that most doctors/providers and consumers/patients just don't know about and it'll be helpful the the 'fund of knowledge' about fibromyalgia.  It was helpful to me to find out, as I did adjust what I was doing with my free time for a while, and then it got back more in the normal range and just this downward spiral I had been in turned in the upward spiral and last year I got back to downhill skiing!  AND I wiped out my first day when I was going along at a pretty good clip and had no problems with feeling my age of 48 at the time!  Felt just like when I fell when I was 8, so I figure I'm good to go.  I'm exactly six months today from turning 50 so maybe it'll be different 'when I really get old' (Wink!)

~ ~ Mardy

Hello , I'm a 17 yr survivor myself and have done much research as I've had lots of time to do so. If your iron is good then they may want to check your iron saturation. Sometimes it can be off. That is the actual amount of iron which is getting into your system. Also Vit D plays a huge part in bursing easily. I had a problem until I had my Vit D checked. It was so low that the dotor put me on 50.000 units a day for a month then 2000 after.  I have written a book with many helpful things such as proper supplements, breathing techniques , removing toxins etc.  You may find an inside the book view at www.amazon.com [32] and I also have a story on here in the Fourm section about "Your story of Fibromyalgia"   I hope this helps a bit.   Blessings

Hey Mardy,

Maybe the prothrombin or protime blood test?   I had blood drawn weekly for a year while on coumadin and that's what they were looking at, how long it took for my blood to clot.  

The good part is, I'm now over my fear of needles!

Aimee

Seeing alot of other Fibromyalgics on here talking about the Savella. Well Ive been talking back and forth with a few of you and Ive finally come up with (for me) the perfect cocktail of meds that have me feeling better than Ive felt in years!! Savella 50mgs every 6 hours (1 in the morn) about 9 am and another at about 3-4 pm) 1, 150mg of Lyrica at night before bed about 9-10pm. I have been sleeping through the whole night up to 8 hour without waking and it is so great!I get up and 1st thing take the Savella and drink coffee and let my dogs out . It starts working in about a half hour or so and Im ready to go for the day. I can skip the eve dose of the Savella if needed to be cost effective but  and this is a big but Ive come to realize that when I do it needs to be on my day off so that I can nap in the afternoon. Savella does seem to give me a small headache from time to time but Tylenol seems to do the trick and only one NOT THE WHOLE DAMN BOTTLE(LOL)! And just reg kind or arthritis. Im so happy . I m going to talk with my doc to petition for the insurance to pay so that I can continue this therapy. Maybe Ive finally got a balance. Oh! Im also reading a good book about the Fibro and Im going to the gym again and that seems to really help as long as I do not over do and stretch before and after. Anyone have any questions or suggestions about this Please contact me or reply to this post . Hope all gets a good RLS free night sleep . Oh 1 more thing ,NO MORE FIBRO FOG EITHER>>>YAAA!!!!

Tests: They never seem to end!

I saw my pain specialist last week. All of my meds cause bruising, He said to see my general doctor to get the full run of blood work. So, this week I saw him. Next week I go to get the lab work up and then the week after that, back to BOTH doctors to talk over results and where to go from here. In the meantime, I am supposed to take Vit.K, ice bruises the day I get them,and heat afterwards.

Mardy- that test you described is for how long it takes for your blood to clot. My doc is checking my platlets to see what is going on.

Thanks everyone for the updates on what to look for and what to ask my doctor!

 Today Fibromyalgia Network broadcasted on Facebook about their new article which is about a study done about gauifenesin with fibromyalgia. I have put a link to it below in a comment and titled that comment so you can find it easily.  Please scroll down and find it and read what is at the link at FMNetwork.  Also read over this post, as one of our guests/users was clearly one of the people who believed this helped.  You will encounter others if you live your life and talk to others who have had fibromyalgia, so please become educated about this so that you can continue the education and health care moves forward because of your being properly educated on the topics that come up the most.

There is a note at the bottom of the article which explains why some, like me, say "it worked for me"; I saw some improvement when I took massive amounts of gaui in the past, as recommended by my MD who had learned about these theories, and then another one year later supported the guai protocol for FM as well.  It's a mucous reducer and therefore it can help with air/breathing during both the day and the night (sleep apnea or not getting enough air flowing and oxygen into the body/brain, for instance).  

The Guaifenesin Protocol WORKS!

  The Guaifenesin Protocol demands a life change, and complete understanding of what you must do for yourself, as does the treatment, for say, Diabetes. When my husband was diagnosed with that he had to learn for himself what he could eat and could not eat. He did not have a physician or nurse with him to read his labels. Until he learned for himself what to do and how to do it, he could never be healthy and always had misadventures. There was no diabetesdoc at the end of an email who would tell him if he could eat cheerios. He was given the guidelines and he had a choice of embracing them and getting his health under control or being half-committed and thinking a little bit of sugar couldn't possibly hurt, then feeling lousy much of the time.

How will I feel when I start the Guaifenesin Protocol?

When you start guaifenesin there are several things you may experience. Some people actually feel better for 24-48 hours. This is not a common reaction, but it happens because the guaifenesin begins to help the body excrete phosphate right away, if it isn't blocked. You may feel nothing at all. Remember that you won't feel differently until you get to your therapeutic dose. This means that the majority of people won't feel anything for the first week on guaifenesin simply because a dose of 300 mg twice a day (the reccommended dose for the first week) isn't high enough to begin reversal.

Once you've hit the dose that works for you (most people will experience this at 600 mg. twice a day, and ninety percent will feel it by 1800 mg. of guaifenesin a day) your symptoms should exacerbate. You'll be more tired, more achey -- as if you are coming down with a flu. You may be more emotional, your irritable bowel may flare, you may be absolutely exhausted. Your symptoms, any and/or all of them can get distinctly worse. When this happens you'll know you're at the correct dose.

Some people do reverse without a distinct worsening. Their symptoms might get only slightly worse for a short period. But their maps will show clearing. These people feel as if they have a straight line of clearing instead of the up and down cycling. These people are in the minority, but if a mapping confirms you're making progress, even though you haven't felt much worse, you may be one of the lucky ones.

Is Fibromyalgia an auto-immune disease?

Fibromyalgia is not an auto-immune disease. Auto immune means that the body destroys itself. Hashimoto's thyroiditis is autoimmune --the body actually attacks its own thyroid as if it were foreign tissue and destroys the gland. ( "Auto" means self as in the word autonomy.) Antibodies made by our own body destroy parts of it in this kind of illness.

In fibromyalgia there is no tissue destruction. It's one of the hallmarks of FM, actually. No changes are seen on Xray, MRIs, on blood tests, or in biopsies. If you see destruction--you know immediately that the cause is from some other condition. The immune system in FMS is somewhat underactive.

This should not be a huge shock to us fibromyalgics since our mind and our muscles and our stomachs and our fingernails and hair don't work very well either. Our immune systems are probably too tired to attack us! There doesn't appear to be any more of a connection between the immune system and FMS than this general one. top

14. What is Fibromyalgia?

Fibromyalgia is a syndrome, meaning that it is a collection of symptoms that occur together, and not all patients have all of them. Women are affected more than men--only about 20 percent are male--and it also occurs in children. Fibromyalgia means "pain in muscles and fibers." This pain must be present in all four quadrants of the body for three months. Diagnosis is made by the prescence of tender swollen areas that hurt when a small amount of pressure is applied. However, not all patients have significant pain, for some fatigue is the primary complaint. Other symptoms include headahces, irritable bowel syndrome, irritable bladder, vulvodynia, problems with memory and concentration, nervousness, depression, and sensitivity to sound, light and odors. top

15. What causes Firbromyalgia?

We believe it is an inherited trait and that from birth phosphates very slowly build up in your tissues. At puberty and other accelerated growth times your body uses more of the phosphate you ingest. The build up might completely stop at that time. However, at some point, depending on your genetic trait, you become symptomatic: ie the phosphates have built up to the point where they cause an impediment in making energy. Eventually this lack of energy, dysenergism, causes our symptoms.

You will reverse one year of build-up with about 2 months of guaifenesin. If you stop taking guaifenesin when you stop feeling symptoms the build up will begin again and in time your symptoms will come back. That's why we stay on guai for life despite the fact that we feel better. top

16. What is the difference between Fibromyalgia and Chronic Fatigue Syndrome?

Chronic Fatigue is a symptom of Fibromyalgia. All pain is diagosed by a subjective scale - "Does this hurt?" If a person has a high pain threshold, "this" wouldn't necessarily hurt. Yet CFS patients have all the cognitive symptoms and many others of classic fibromyalgia. They don't fit the usual FM classification because pain is a minor rather than major complaint. It doesn't however make their illness different than ours.

It helps to think of all illnesses, especially ours, as a bell shaped curve. In the middle, where most patients are--is a mixture of pain and fatigue. At each end are the extremes: a few patients with only pain on one side, and on the other, a few patients with only fatigue

Forty-six years ago, a patient taking a gout medication showed me that he could peel tartar (calcium phosphate) off his teeth with his fingernail. This observation indirectly led me to study an unrecognized systemic problem being reflected by deposits from the disturbed saliva. We now postulate that a defective metabolism, possibly a kidney enzyme, forces retention of phosphate, which gradually accumulates to detrimental levels in many tissues. This excess induces inadequate energy formation (ATP), cellular fatigue and malfunctions that explain all the symptoms of fibromyalgia. Our paper for interested professionals defends that theory.

     We no longer prescribe gout drugs (uricosurics). We now use guaifenesin for fibromyalgia because it has no side effects and is even safe for children. It is marketed for respiratory mucus problems and is available without prescription in various strengths, though some brands may not be effective for fibromyalgia. Currently, we can only advocate three products: the long-acting 600 mg tablets 'Mucinex' and one compounded for the Marina del Rey Pharmacy as well as a 400 mg tablet that is free of contaminants from Pro Health. (see Web site: fibromyalgiatreatment.com) We begin patients with 300 milligrams twice a day for one week. Feeling distinctly worse suggests adequate dosage and patients may remain on that amount. This suffices for only 20 percent of patients; if symptoms do not worsen, we increase to 600 mg. twice daily. Reversal begins for 80 percent of patients at one of these two levels leaving 20 percent who will need more. During reversal, symptoms are usually intensified and new ones may be experienced. These are not side effects, but signal that reversal is underway. Better hours eventually cluster into days and finally weeks. During this subjective roller coaster ride, lumps and bumps soften, fragment and gradually clear. Recovery is more rapid than the time it took to develop the illness. Even genetically-slow responders, clear at least one year of metabolic debris every two months. Longer endured disease requires more time to restore. Newer lesions clear first and the oldest ones last.

     The original description of fibromyalgia as "rheumatism with hard and tender places" has certainly been forgotten. Tender-point examination limited to a few preordained parts of the body has less value than our totally objective body mapping. .. We use our finger pads as though we were trying to iron out underlying tissue and thereby find the swollen places within muscles, tendons and ligaments. We record their location, size and degree of hardness on a body caricature that becomes a baseline for future comparisons. Unless swollen, the purely subjective tender spots are excluded in mapping. Subsequent examinations and patient inputs readily determine drug dosages and sequential disease regression. We hide previous maps until we complete the examination and only then compare them to confirm progress. The most important site for confirming the diagnosis and assuring future success is the left thigh. The outside of the quadriceps muscle (Vastus lateralis) and the front part (Rectus femoris) are involved in 100% of adults and clear within the first month upon attaining adequate dosages.

     Ignoring the following will guarantee treatment failure. All salicylates including aspirin completely block the benefits of guaifenesin for fibromyalgia. This occurs at a kidney site—something well documented with uricosuric gout medications. Salicylates are often found in pain medications. Less appreciated is the fact that all plants manufacture them in quantities that vary with genus and from crop to crop. They are stored in bark, leaves, roots, and seeds where they serve to repair damage or as weapons against soil bacteria and fungi. Salicylates are readily absorbed through the skin and intestine when introduced from botanicals in cosmetics, herb derivatives in medications and supplements, sap or oil from plants, gels and extracts. Individual genetics determine ease of blocking but all patients should assume a high level of susceptibility and take no risks. New or replacement products should be carefully inspected for changes made by manufacturers. Items on Salicylate-free lists should be double checked for accuracy.

     The following is a partial guide to natural and synthetic salicylates that must be avoided:

Medications: (1) Pain products containing salicylate or salicylic acid, for example, aspirin, Salflex, Anacin, Excedrin, Disalcid. (2) Herbal medications such as St. John's Wort, gingko biloba, saw palmetto, blue-green algae, Echinacea, or nonni juice; vitamin supplements with alfalfa, parsley, rose hips or bioflavonoids (quercetin, hesperiden, rutin). (3) Wart or callus removers, many acne products and dandruff shampoos contain salicylic acid. (4) Pain creams, balms and lotions such as Ben Gay, Myoflex or Salonpas. (6) Medications such as Pepto Bismol, Asacol, Alka Seltzer or Urised.

Cosmetic and Topical Products: (1) Skin cleansers or exfoliants that use salicylic/ betahydroxy acid(s). (2) Hair shampoos, conditioners or sprays with plant derivatives. (3) Bubble baths and lotions with essential oils or plants such as aloe, ginseng, lavender; almond or grape seed oils etc. (5) Sun screens or tanning lotions with aloe, octisalate, homosalate, or meradimate. (6) Lipsticks or balms, Chapsticks or sunscreens with aloe, camphor, menthol, or castor oil. (7) Deodorants with castor oil. (8) Sticky plant juices or saps adhere to the skin while gardening or weeding (Patients should wear waterproof gloves when gardening). (8)Beware of tissues, toilet paper and baby wipes with aloe.

Shaving Aids: (1) Shaving creams with aloe, mint, menthol or mentholatum will block. (2) Razors with aloe strips adjacent to the cutting edge deliver salicylates through microscopic cuts. Vitamin E, lanolin, and mineral oil are all acceptable.

Oral Agents: (1) Most mouth washes contain mint, wintergreen or salicylate (Listerine, Scope). (2) Toothpastes contain salicylates, as well as fresh or artificial mint, often unlisted. Use Cleure toothpastes, the non-mint ones made by Tom's of Maine or others listed on our website. Baking soda and/or peroxide provide good cleansing and whitening. The non-mint pre-brushing rinses are acceptable as are the  Cleure Mouthwashes. (3) Use no lozenges, dental floss, breath fresheners or chewing gums with any mint flavor, including menthol, wintergreen, peppermint or spearmint. (Fruit/Cinnamon flavors may mask mint hidden by the stronger flavors.).

The word active ingredients should alert one to scrutinize inactive ones as well.

PHYSICIANS CANNOT BE EXPECTED TO RECOGNIZE OR KNOW ALL THE INGREDIENTS IN TOPICAL PREPARATIONS. DOCTORS WILL ASSUME GUAIFENESIN HAS FAILED IF PATIENTS DO NOT COMPLETELY PURGE SALICYLATES. IT IS YOUR RESPONSIBILITY TO FOLLOW OUR PROTOCOL EXACTLY.

     Dictionaries help identify products. When calling manufactures check ingredients yourself because often personnel do not realize that plants make salicylates. Go to the web sites and reference books we have listed for assistance. This web site can connect you to a support group eager to help with updated safe-product listings, answer questions, and warn of pitfalls.

    dont eat touch Mint!!!!!!!!!

     Do not use decongestants or cough medicines to get guaifenesin. There are potential side effects from various additives. Repeat: the drug is available without prescription but at variable prices and is no longer covered by insurance. Single ingredient guaifenesin has no side effects (rarely mild, but transient nausea) and no known drug interactions. Using it with salicylates causes no ill-effects, it simply negates the drug's effectiveness for fibromyalgia.

     Pain medications such as acetaminophen (Tylenol), Ultram, Darvocet-N, Imitrex, non-steroidal drugs such as Advil, and Aleve, will not block guaifenesin. Though they do not block, we do not agree with the use of codeine, hydrocodone, oxycontin, morphine, and methadone that are frequently used to control pain at the cost of eventual addiction, something hardly acceptable when dealing with a chronic illness.

     Our treatment is not for those lacking courage. It calls for patient skills and, hopefully, physician assistance. Remember, reversal of the disease reproduces past symptoms and may cause new or long-forgotten ones to re-surface. The intensity of these early cycles often causes concern during the initial weeks of treatment. Such symptoms are not guaifenesin side effects. Patients realize they were getting steadily worse long before starting our protocol despite medicinal Band-Aids used to mask symptoms. We offer hope to those with determination to try once more despite previous failures. This is a highly-effective protocol.

R. Paul St. Amand, M.D.

Associate Clinical Professor Medicine

Endocrinology--Harbor-UCLA

A new friend on Face Book was so nice to send me this link to the article about my book and my story. I don't know how to do these things and am so grateful that she was so kind as to do so. http://www.aawmag.com/story/14352 [38] Finding Your Way through Fibromyalgia and Chronic Fatigue

I share many helpful tips for pain management and help with many of your symptoms.  I'm a 17 yr survivor so I walk this journey with you.

I have had rhyzotomy (thorasic and lumbar region) My spine is /was very sore. This is helping a bit, although my neck hasn,t been done, so still have lots of pain/migraine from that.

Can this lasering of my nerves tell my muscles that "hey, you don't have to be sore anymore!"

Has anyone else had this done with sucess?

Thanks, hope someone answers and that I can find the answer!!

Moira

Moira -

I saw your post and thought with the other people right now that I know who are coming back from surgeries for their issues, it was time to maybe start looking at having more of this kind of thing over at the Chronic Pain forum area.  I'm putting a link here for you to follow, which will give you the set-up of where we are at with this and hopefully we'll have some people very soon coming into that area with some expertise to answer your question.  Thanks so very much for asking -- I've wanted to get more information about these things going, so here you are bringing it to the forefront! Thanks for being part of the solution  ~~ Mardy

www.lumigrate.com/forums/collaborative-care-discussions/chronic-pain [41]

This is from a blog post that I now have also sprinkled around the Forums wherever I think it's important to be seen.  This is my report from the Chronic Pain Documentary Film Series Kickoff conference where I had the pleasure of hearing, meeting and getting a deep respect for Jerry Rand, MD of Bay Recovery, which is seen on A&E's 'Intervention' show in 2009 and 2010 when it is a case related to pain and addiction to Rx for pain management.  Dr. Rand has said publicly (on radio) that many years ago as an internal medicine doctor he became addicted to prescription pain medications which then turned the direction of his career as it is.....

Hope this  helps many .... Mardy

"Doctors train patients to take pills for all their needs.  Doctors are trained to do this.  But in the end, the meds are more problem than the pain."  Dr. Jerry Rand, Medical Director of Bay Recovery Centers and Medical Clinic was a pleasure to hear speak and to get to know more informally later.  He is obviously an expert on chronic pain and it's treatment, and the addictions that unfortunately occur too frequently.  Stating it is 'disgraceful and cruel' what happens between doctors and patients in the escallating struggle that can happen with doctors and patients who originally were trying to treat pain, he impressed upon me his compassion toward people and his passion for his work.  He was a wealth of information, and I'm going to share what I can and also give the link to his clinic's website at the end.

There is a difference between dependence on a drug for pain and dependence for the chemical which is addictive.  Drugs can be safe, or 'create a mess'.  As he presented in the beautiful 4th Street Studio in Berkeley, he craftily wove an analogy about artwork: Pain and Medication are like separate paintings which get overlaid when you treat pain with medication -- you end up with both together.  His clinic utilizes an integrative model, which is also Lumigrate's model ("luminous" and "integrate" is how the name was devised).  An integrative model addresses pain management by focusing on "Functioning and Quality of Life" versus "Reduce Pain Level".  (Anyone wanting a thorough understanding of the reductionistic basis of the allopathic model can download our free video 'Health Management' by Chris Young, PhD -- it's an excellent study in theory of medical models which offers progressive solutions for health care for systems and individuals). 

The brain has what is called 'neuroplasticity' -- it changes.  Alterations to the body's systems occur with drugs due to changes in chemical responses, affecting the brain.  Blood flow, adrenal glands, and the hypothalamus to name a few.   This changes over time and when you stop a drug, the brain may never be the same as it was before the drug. 

It was clear there was a key point to learn from Dr. Rand about 'addiction' and 'pseudoaddiction'.  Pseudoaddiction is when the person needs increasing medication to control what the medication is prescribed for, but is not seeking more due to 'addiction', which is when the body is craving more of the chemical.  Many times people use a prescription pain medication to cope with emotions or take it for sleep.  Opiates directly affect the hypothalamus, so you get non restorative sleep when taking them.  This is a critical point for people with fibromyalgia and other chronic pain conditions: our Dr. Young's seminar on chronic pain (in development) teaches that opiods are appropriate for acute pain for a short time (after an injury or surgery, dental work, etc.) but are not appropriate for long term use because of the effect on the hypothalamus. 

There is a quiz on Bay Recovery's website which will help you determine where you are at with your medication use, and I recommend everyone take a look whether you're on pain medications or not, as it is very educational.  Treating pain and treating addiction are done very separately and it's very complex. 

Acquired prescription drug behaviors: Most addictions start at age 12-25, which is a time when the brain is growing, so it's a really bad time for the brain to be receiving drugs.  The statistics he quoted about 12-18 year olds' use of oxycontin was staggering, and many are getting them from their home's 'pharmacy' -- prescriptions in the parents' medicine cabinets.  Which brings us to 'abherent drug behaviors'.  Unsanctioned dose (taking more trying to reduce pain), asking for more, hoarding.  He was kind about this: "People are not exact.  If a person is to take a medication once a day, they are 99% with it.  If it's 3x/day, it drops to 74%".  So people end up with extras, which they hang onto and then that can cause troubles later.  The patient and the doctor lose trust with each other in the time abherent drug behaviors surface.  This can also include patients requesting a certain drug, accessing multiple doctors (which is illegal in some states now), forgery and stealing.  And this is where Dr. Rand came back to talking about our youth who have access to these medications and then become addicted.  

There has been a lot of conversation on facebook among the pain population about new legislation about pain medication and people were quite up in arms about it.  It was my opinion that in the long run it was going to be beneficial, but I understood each person's concern that they would have more trouble accessing pain medications.  I encourage everyone to become more educated about this topic and then help your doctors be more educated as well -- remember, nobody has as much understanding of your needs as YOU.  If you're asked to have a 'pain contract' by your doctor, really understand why these exist.  Keep learning about medications and the options available, both pharmaceutical and non.  Yesterday I wrote and referenced Dr. Teitelbaum's talk and website, which includes which medications and supplements he recommends, and generally he and Dr. Rand's information was in agreement (although Dr. Rand does not prefer to use Ambien for sleep and said he will prescribe Lunesta sometimes). 

The take home message is clear for those of us with chronic pain: find other ways than opiates and if you are currently on them, start finding information and providers who can help you get switched over to other things.  (Mindfulness meditation was something another speaker presented about -- which is a 'coping strategy'; I learned it before I had chronic pain and it's been invaluable and perhaps has thankfully kept me from going the route Dr. Rand speaks of occurring too frequently).  Pain is not fun and it can limit your life, but addiction ends up limiting it more.  Lumigrate has plans to have a pain management home study program in the future, which you can purchase and work with your local providers with, so we do have this on our radar screen to bring to YOU.  Keep learning and keep teaching your providers! 

The link to Dr. Rand's site: REMOVED THE LINK, DO NOT WANT TO ENCOURAGE PEOPLE TO GO THERE 

However, he did give a good presentation I have reported on here and told the crowd about a good website resource, which I have found to be one of the best resources I've learned of.  pain.com [43] (Demonstrating that you don't have to throw the baby out with the bathwater, so to speak. Just because he ended up in a mess of problems because of being human, being in business in a difficult time, ... whatever.... doesn't mean he didn't have something he shared that is of value and so I've sifted and kept the good, made it clear about the bad, and encourage you to learn the lessons between the lines here when evaluating YOUR providers. 

 

Note from January 2012: I have been contacted by more than one former patient of Dr Rand's at Bay Recovery who have asked me to remove all information about him due to their concerns for others based upon their experiences. I appreciate that they are taking the time to research where he might be doing outreach to get his name heard, so thank YOU.  That is true 'generosity of time and energy' which might be translated into 'spirit'.  

I had encountered a change with Dr Rand's behaviors when interacting with me which were very different than how I had experienced him when we spent a day at a chronic pain conference together, so had stopped working to get information from him into Lumigrate at that time.  I have removed all the solo pieces he and his team had posted in the past in Forums but I have opted to keep this and one other piece but adding this disclaimer/caution, because it is "baby with bathwater" as this is an excellent resource for people.  If he was providing good information in the past which is included here and people can learn from it, that's one thing; using him as a physician would be another which I would want people to make their own decisions about.  

To help in your researching this provider (and I suggest you do this for all your providers) here's a link to the portion of the California Medical Board related to Dr Rand's current and past  http://www2.mbc.ca.gov/LicenseLookupSystem/PhysicianSurgeon/Lookup.aspx?licenseType=G&licenseNumber=25749. My apologies for not having done that step after we had met when Lumigrate was only two months 'live' -- I continue to learn with this enterprise and change my procedures just as I have as a medical consumer. Just because a big TV show uses him doesn't mean there's a good history.  Not something I had to know as a woman with fibromyalgia or an OT practicing in Colorado! 

 

I wanted to put a little note that Dr Spurlock has mentioned to me that in his past professional time, including when he worked for Fibromyalgia and Fatigue Centers, they really worked the theory related to why taking large doses of guaiffenesen would work but didn't get much result for all the effort and expense involved.  Thought I'd add that here to balance out the above 'enthusiastic' post!  I, in the past, followed it and I thought that I saw some improvement but not nearly as much as other things have brought me since.  ~~ Mardy

Fibromyalgia Network just came out with an outstanding article on the subject of guai and FM, here is the link.  PLEASE READ IT if you are at all interested in the subject, or if you think you might someday in the future have a conversation with someone with FM who is going to talk about guai.  

www.fmnetnews.com/coping-resources/consumer-alerts/product-6 [46]

PS -- the NOTE at the bottom of that article about why a few people might have found it to be of benefit is an EXCELLENT one, and fits in with what I have stated about taking it as a mucous reducer due to the overall sinuses and neck/throat I have not being 'normal' and interfering with breathing. So the usual dose of guai to make the mucous move makes sense in my case that it helped -- the breathing problems were interfering with sleep (which even though I asked for a sleep study about 5 years into having FM, it was not agreed upon by the doctor and the sleep lab and all they did was check me for seizure when I fell asleep. Very frustrating, I was on the right track and just didn't have the right team with/around me at that time.)