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Treatment Tracking?
6 Replies
Tspringer - November 24


First post, long time reader.

My wife has suffered from fibro for over 9 years with the symptoms getting progressively worse. Reading threads on this forum, her experience is both typical and uniquely terrible.

We have pursued lots of treatment options ranging from OTC pain meds to spending tons of money at the Fibro and Fatigue Center here in Atlanta. Sometimes she improves, other times not.

We attempted a major life change and chased the dream of moving aboard our 47' sailboat full time, homeschooling the kids and exploring the far reaches of the caribbean as a lifestyle. This failed as my wife's fibro increased to the point where we were convinced she had MS or something worse and we had to move back to the Atlanta area. After spending close to $10K (no functional insurance) on seeing lots of various doctors and having every test known to man done we are back at square one: fibrohell.

Right now we are working on various dietary supplement protocols and researching medications. We tried Lyrica but it made her worse. She was taking Prozac at the same time and I suspect that may have had an adverse impact. I am reading a lot about Savella and we may try that.

Here is my question -

What are folks using to track their symptoms and treatment protocols. We look back at various things Michele has tried in the past but given so many treatments attempted, so many possibilities and so many symptoms it is impossible to recall what was or was not working a couple of years ago in detail. We end up with lots of ideas and little hard data. Too often it feels like throwing stuff on the wall and hoping something sticks.

I ask about this here because I am researching developing a software program to aid individuals in creating treatment protocols, track symptoms and be able to measure results over time. This system would have a comprehensive database on medications, dietary supplements, exercise programs and other key data points that users could configure into individual treatment protocols. Users would also define their own symptoms within the system and then be able to update those symptoms quickly through a graphic interface accessible via a browser, smart phone or PDA. The whole system would allow a vast pool of treatment data to be built up thus aiding others seeking to build their own treatment protocols.

Does anyone think this would be helpful? How are people quantifying their ongoing treatment efforts relative to their symptoms currently?

One other question - Are there other forum sites with a large user base focused on fibromyalgia and Chronic Fatigue?

Any thoughts are greatly appreciated.



Fantod - November 25

Terry - Welcome to the board. I'm sorry that Michele is having such a difficult time with finding something that works for her. She is not alone in that experience.

Currently, I keep a running list of my medications and known health problems and allergies on the computer. It is too hard to remember everything and there is never enough space on the forms in any doctor's office. I just change the date and drag my print out with me wherever I go.

I like your idea but I think that Fibromyalgia (FMS) presents a unique challenge. Pain is subjective which is why most of us have such a hard time getting any doctor to really understand how we feel at any given time. I don't know if entering that information would help or not. Then the spector of being a drug seeker or being labeled (again) as a neurotic hypochondriac comes to the forefront.

My own experience has been hit and miss. I've been blessed with some excellent medical care. I see a nutritionist who starting dealing with FMS 20 years prior to it being acknowledged. I also see a functional medicine specialist who has been very helpful. A functional medicine specialist is an MD with an interest in holistic medicine. She ran some bloodwork that identified some allergies that were triggering my immune system but not giving me typical allergy symptoms. As an example, it turns out that I am highly allergic green food colouring. I was using a shaving gel every day with green food colouring that was contributing to severe pain in both legs. (The test is called the Elisa/Act - you can find info about it online.) I had no idea until the test results came back. Since I got rid of that shaving gel, my leg pain is much improved.

By the way, OTC medication does not work for the type of pain associated with FMS. Only certain classes of prescribed medication is effective. I also use Curamin made by Terry Naturally for breakthrough pain. Curamin in this form is highly purified and comes in capsules. It does seem to help as I really notice a difference if I happen to run out. In addition to FMS, I also have advanced osteoarthitis and degenerative disc ddisease.

I'm not a big fan of the Fibro and Fatigue Centers. They sound wonderful in theory. My issue (and it was a big one) was how much treatment was going to cost. They were very nebulous about what might be required. While I don't expect an absolute number given what we are dealing with, a ball park figure would have been nice. That turned me off to the whole thing. People either swear by them or have nothing good to say. There doesn't seem to be a happy medium.

Have you looked at the National Fibromyalgia Association website? If you Google FMS and/or chronic fatigue you'll probably find some other groups. I never go anywhere else but here. Everyone on here seems to have their heads screwed on straight which is a huge help when another bad day strikes. Thanks for joining us. I'm curious to learn more about your idea. Enjoy the holiday weekend.


Tspringer - November 25

Fantod, thanks for the reply!

We have had little to no luck finding knowledgeable doctors to assist with Michele's treatment. Nothing new... we experienced the same thing when my son was diagnosed with autism at age 2 1/2. WE ended up learning everything we could and designing our own therapy program based on the principals of Applied Behavioral Analysis and now he is am amazingly articulate and brilliant kid. "They" call him very high functioning Aspergers now. we just call him Jackson. Our lesson was that often YOU can educate yourself and end up understanding more about a given condition and potential treatments than the doctor your meeting with. Sad I know, but so it goes.

We also found the Fibro and Fatigue centers to be extremely expensive and ultimately this lead us to cease seeking treatment there. They could not tell us what it was all going to cost up front and it was crazy expensive. Thing is though, this is common with most doctors. We have found that almost no doctors office can tell you how much a visit or treatment is going to cost up front and the doctors themselves almost never have any idea how much their services cost. Its a messed up system.

Right now we are having good luck with the supplements approach. She is sleeping much better (Valerian root, Passion Flower, 5-HTP, Kava-Kava and Melatonin at night)and her depression is much improved even though she stopped taking Prozac almost 2 months ago (currently taking Ginkgo Biloba, St. Johns Wort and SAMe plus other stuff). But while sleep and depression are improved, her deep and persistent muscle pain is not and we are seeking medications to help with this and with ongoing headaches. We are aware that OTC pain meds are worthless for her symptoms.

I agree that fibromyalgia presents unique challenges when it comes to defining symptoms and building software to help track them. But I have some ideas that I think would help people define their feelings and experiences within a given framework and enable them to track progress and explore potential treatments. If others have experienced the same frustrations relative to documenting and understanding past symptoms relative to current ones and trying to measure different medication and supplement protocols for effectiveness then there would seem to be a market for such a tool. Todays technology via smart phones also provides an excellent means for people to quickly enter data regarding their symptoms as they are experiencing them. The concept is something that is dominating my thoughts lately.

Is this your site? If so.... excellent job its very informative.



kvc33 - November 25

Hi Terry, You sound like a brilliant man. My nephew has autism and despite his parents best efforts he did not get the intensive early intervention treatment that he needed. It might sound crazy but to be honest I don't keep a written record of what I have tried. I can remember most things but even if I couldn't all that really matters is what is working for me now. If something that I had tried in the past worked for me I would surely remember it or still be on it. For me, after many months on a supplement, I become allergic to it and have to stop taking it so the fact that it helped somewhat in the past doesn't really matter to much to me. What I have seen in other people is that something helps for a while and then stops helping so they have to try something else. I do know a few people who have recovered. I do my best to try one thing at a time so that I will know if it is helping or not and if I have a bad reaction, I want to know what is causing it. I especially like non-medicinal therapies as they are safe and easy. I use light therapy, chiropractic, deep breathing and short walks for example. Since the symptoms of fibro wax and wane, if something seems to help for a short while I don't consider it a success, perhaps that is where your wife is getting confused.


Stacey373 - November 25

Hi Terry - I have to agree with Kvc33. I've only been diagnosed for 2 years, but have been dealing with the symptoms for at least 10 years or more. I can usually remember every thing I've tried, especially if it worked for me at the time. but this illness keeps changing on me...I've been saying lately that just when I thought I had it all figured out, they went and changed the rules on me!

And that's how it always seems to feel. Something that helped me 6 months ago, may not be helping me at all right now. I think it's because it's the same as you can do an activity one day and be just fine and then the next time you do the same activity, it causes pain and problems. with this illness you never know what you are going to wake up to and that makes it hard to find on-going relief.

You do sound like a very smart man and I commend you for trying to do whatever you can to help your wife. I think you could still come up with a program that would's just gonna be very tricky!

Good luck with it and Have a good day, Stacey :o)


solanadelfina - November 25

Terry, I think that your software idea is brilliant. So often, it can be hard to keep track of what has worked, what has not, and whether new symptoms are attributed solely to fibro or if there's something new joining the party. It might also help doctors to have such a complete record of symptoms and experiences to pinpoint what to try next. I wish you the best of luck on it and hope you keep us posted. (There are a number of fibro groups on facebook if you guys are on there.)

Everybody's different with what works for pain, but some things that have helped me are a heated mattress pad during winter months, the medication tramadol, hot baths with lavender salts, occasional light massages (either professionals with fibro experience or using those little rubber-tipped ones from bath sets), doing range of motion stretches every morning and night, and some dance and yoga for exercise.

Please feel free to come to us with questions at any time. :)


Fantod - November 25

OMG - Terry, this is not my site. I am just a participant. I have been on this board since I was first diagnosed about three years ago.

By the way, have you read anything by Dr. Jacob Teitelbaum? He has some interesting insight on FMS.

Also, for deep muscle pain there is a cream called Ketoprofen which has to made up by a compound pharmacy. I use the 20% solution with lidocaine added. It must be applied to clean, warm skin and NEVER layered. Use it after a hot shower or apply rubbing alcohol prior to use. For best results on a really troublesome area, saran wrap can be applied for NO more than 2 hours to help the cream absorb. I find that this works pretty well when all else fails.

I hope that you and your family have an enjoyable Thanksgiving. Take care.



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