Basic Tests to Ask Doctor for

http://www.co-cure.org/drt9.htm

I found this page listing basic tests someone with fibromyalgia/CFS should have done by a doctor. I am thinking of going to my doctor and asking for the following tests at a bare minimum. These tests were probably all done on me initially, but I didn't know as much then as I know now, so I never asked for the results. I just can't kick this darned fatigue :/


4 -- Iron, TIBC (total iron binding capacity), percent saturation and ferritin levels. These tests check for iron deficiency and excess. Both of these are critical to detect. If the iron is high, it is very easy to treat (donate blood) but can cripple and kill you if it is missed. Iron deficiency will often be present even if the blood tests are technically normal. This is because the blood test's normal range is based on preventing anemia from severe iron deficiency. More moderate levels of iron deficiency, however, can cause fatigue, brain fog, cold intolerance, restless leg syndrome, immune dysfunction, and infertility. Because of this, I usually recommend treating with iron if the percent saturation is less than 22 percent OR the ferritin level is less than 40. I recheck each four months until the blood tests come above these levels.

5 -- Vitamin B12 level. Although normal is anything under 209, evidence suggests that significant B12 deficiency occurs at much higher levels even in healthy people. Other evidence suggests that very high levels may be needed to maintain optimum health in CFS/FMS patients. I recommend that anybody with a level under 540 be treated with B12 shots. A good argument can be made for treating everybody with CFS/FMS with B12 shots regardless of the blood level.

Quack Watch

I came across this informational link in a discussion post in the ChronicBabe forums and found it pretty interesting:

http://www.quackwatch.com/01QuackeryRelatedTopics/spotquack.html

It is a good reminder that with everything that we suffer from on a pretty consistent basis, to be on the alert for "quacks" out there who will take advantage of our relentless suffering. The quacks' promises just seem too good to be true, and if we are really suffering we may fall prey! For example, I really want to see an herbalist or nutritionist type person to help me with the supplements I take, but after viewing their info often certain red flags go off. The number one tipoff or lets says turnoff for me is if they want me to buy *their* products only. I feel that a good herbalist/naturopath(?) would focus on guiding me in the effects of the herbs/supplements, and not focus on making me purchase *their* herbs. Another turnoff is that they are usually hundreds of dollars per visit, and of course don't take insurance.

Not every alternative practitioner is a quack. There are nutritionists, herbalists, naturopaths and people that are doing their own research and honestly seeking to help people. More power to them, and I hope those folks will be able to make great strides that will eventually help develop better treatments later down the road. Unfortunately there are people out there who don't have the best interests of patients in mind and are looking to make a profit by taking advantage of people who are hurting and desperate who have had very little luck with traditional practices and are willing to do (and more importantly, pay) anything if it promises to bring some modicum of relief. It's these snake-oil salesmen that make my blood boil, and I think it's important for us to supply ourselves with the proper tools to spot these people, so that when we are at a low, miserable point in our lives when nothing seems to be working and you are at your wits' end, we will be able to tell the difference between those trying to help and those looking to take advantage.

So be careful fibros, quacks will rely highly on your emotional state, desire for relief, need for action, and try to create fear of what will happen if you don't follow their guidelines.   

I also think its a shame that the pharmaceutical and alternative medicine interests can't work together, and that doctors seem to veer first to pharmaceuticals, when in fact supplements may have the same effect! But of course supplements can be much less expensive and available, and I guess we aren't supposed to find that out.....For example - I was prescribed Limbrel for my joint pain, and through my prescription plan it was $50/month. I did a little research, and 1. Limbrel is a food medicine, meaning ITS MADE FROM HERBS!!!! 2. The SAME ingredients are found in OVER THE COUNTER Move-Free Joint supplement! (For less than $50/month of course!!!)

I think with everything that we do, taking charge and being our own health advocates, we have to be on alert for what seems reasonable, and what seems too good to be true, and share with each other the information to know the difference!

*hugs* 

A Good Resource

If you haven't already, check out http://www.patientslikeme.com/. It's is an EXCELLENT place to track your symptoms and treatments, and then be able to print it all out to share with your doctors! (Yay fibrofog won't thwart us there!) AND there are some good fibro forums too! There is a good ongoing post detailing the Foods FIbros should avoid. Super interesting. I would link to it, but you have to login to access it.

Fibro Docs on Facebook

 This looks like a good resource if you are on facebook check it out:

http://www.prohealth.com/fibromyalgia/library/showarticle.cfm?libid=15401