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Newly diagnosed, and frustrated
3 Replies
t3apps - June 16

I seem to have been one of the lucky(!) ones, getting a diagnosis about 9 months after my initial onset of symptoms. However, having a diagnosis and having a life seem to be totally different paths, at least right now as I struggle to find information, possible treatments (medicines and homeopathic), and a way to keep working so that I can keep my health insurance.

My rheumatologist just prescribed Cymbalta and Plaquenil to help with my extreme fatigue and pain. Since I use a mail-order pharmacy, it's going to be a few days before I can start the build-up process.

I like my doc - she listens and discusses why we are trying certain treatments and not some other options. The part of this that I understand the least seems to be one of my strongest symptoms - commonly known as Fibro Fog. Unfortunately, as an air traffic controller (not currently working live traffic!), any type of mental fog is not only medically disqualifying, it is very frustrating to someone who is used to thinking through options quickly and clearly to make a decision. I can say that whomever coined the "Fibro Fog" designation was accurate on the description.

I will probably post more as I investigate and read other threads - but anything that can be suggested to help with the fog is greatly appreciated.


Pikespeak - June 16

Hi t3apps! I had some short-term memory problems with Lyrica. Now I am on Savella (very lucid again). I don't know about Cymbalta or Plaquenil, but keep track of any new symptoms once you're on the meds...


Fantod - June 16

t3apps - Welcome to the board!

Fibromyalgia (FMS) is recognised by the Centers for Disease Control, the National Arthitis Foundation and the World Health Organization (WHO). It is a disorder of the central nervous system that causes widespread chronic pain. The mechanism that causes it is not understood. FMS is correctly referred to as a syndrome.

I'm curious as to why you were prescribed Plaquenil? Do you have arthitis? Plaquenil is not typically prescribed for Fibromyalgia.

Also, you should have been prescribed a sleep medication like Amitriptyline or something else. This is a crucial part of treating FMS. Fibromyaliga interrupts the deep sleep cycle with short bursts of high intensity brain activity. Your muscles require deep sleep in order to repair themselves from the days activities. No deep sleep means higher levels of pain.

If you are not getting proper sleep, your level of fibro-fog is going to be bad. That coupled with the stress of having been diagnosed with a chronic health issue makes it doubly challenging.

I see a nutritionist who suggested that I use a supplement called "phosphatidylserine." It is also referred to as "Neuro-PS." The best deal that I have found is through a vitamin company called Puritan's Pride (we can not post links)online. I use a lot of their products and find that they are very reliable. They have good sales and you can also search Google to find coupons for free shipping etc.

With regards to medication and supplements, don't expect miracles immediately. Typically, it takes time and a lot of tinkering to find a workable regimen for each FMS patient. It can take 2 weeks or much longer before you may start to notice a difference. I use a mix of conventional and homeopathic supplements. If you would like some more information on homeopathic supplements, I'd be happy to help with that too.

Have you been tested for a Vitamin D deficiency? This is a common problem among people with FMS. Also, you may be gluten sensitive or intolerant. The Vitamin D test is a simple blood work procedure. To test for gluten, the most accurate test is done using a stool sample (Enterolab - use Google). Blood work for gluten gives a lot of false negatives. Biopsies may miss the section of the small intestine where the villi are damaged by gluten. Either of these problems can also create a lot of pain.

To lower your pain levels, watch your diet. Anything containing an artifical sweetner including Splenda will probably make your pain worse. Avoid deep fried food, lunchmeat (nitrates) and red wine to name a few things. If you need a sweetner, use something made from the nontoxic Stevia plant like Truvia or Sun Crystals which you can find in the grocery store baking aisle.

For energy issues, avoid stoking yourself up with chocolate and caffeine. The object of the exercise is to keep your blood sugar level throughout the day. Eat high protein and smaller meals more often. You could also try using Corvalen (d-ribose)(use Google) to assist with your fatigue levels.

And finally, go online to Amazon and order "Fibromyalgia for Dummies." Like all of the dummies series, it contains good, basic information about managing this syndrome.

You are not alone. We have a very nice group of people on this board who are both knowledgeable and supportive. Let us know how we can help as you work your way through the process of learning to live with Fibromyalgia. Take care and God Bless.


t3apps - June 16

Thanks, Fantod and Pikespeak, for the quick responses.

I will investigate everything as people suggest it - but I guess I need to add that I had a Roux-N-Y (gastric bypass) surgery in 2005 and that I have been diagnosed with both Osteoarthritis and Inflammatory Arthritis. Also, my rheumatologist has referred me for a sleep study (which I still need to schedule).

I did order "Fibromyalgia for Dummies" and one other book from Amazon - hope to have them for reading this weekend.

I have been tested for vitamin deficiencies (and everything else, it seems) and the only thing that was noted was marginally low for B12 and Iron, both of which are very common with bypass patients. I take a vitamin supplement for both.

Thanks again, and please keep the information coming.



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