Letters From Our Readers – Comments and Suggestions 1-24-07

A Hope Notebook

I love to get your FM newsletter! I have had FMS for three to four years now, and lately have been very depressed and upset about hurting and not being able to do things like I used to. But I am getting a lot of information from your newsletter and am taking some of the articles and putting them in a notebook for future reference or just for a boost of hope. – Cindi


What Works for Me

I am on disability and have learned through a pain management program how to manage my pain, rather than it controlling my life and my attitudes. It has made a tremendous difference in how I look at and live my life…I use as few medications as possible and treat my symptoms with eating as much organic and healthy food as I can (I do sometimes indulge in sweets). I exercise (walk) and stretch. I find that stretching is very important for many of my pain symptoms with Fibromyalgia. I can tell the difference almost immediately if I don’t stretch (I use Pilates, gentle and sustaining). My faith is also a big part of my health and healing.

… I appreciate all the information that is available in your newsletters. I have just started to use the message board and chat rooms. I keep busy trying to maintain a functional life, and I do enjoy the people I have interacted with on the boards, etc. So, thank you…for helping so many people who often don’t have the energy, focus or connections to find the information that you provide. – Ms. M


New Drug Research, etc.

Your January 10 issue was packed with great articles. First, I was drawn to the one about how similar FMS, CFS and MCS symptoms are. It was the first place where I've seen a concise list of symptoms. The article on polyphenols has convinced me to drink more green tea and the one on the new FMS drugs about to hit the market gave me such hope.

I was pleased to read that the pharmaceutical market is recognizing that Fibromyalgia is real and, as such, needs to be treated like other diseases. Of course, they aren't doing the research on new drugs because they've suddenly become philanthropic – they know there are billions of dollars out there. But however we get these drugs, it's about time! Thank you so much for these informative newsletters. – Nancy


What FM Feels Like

…Imagine having to carry a piano around all day long, then at night you lie on your bed and it feels like you're lying on a pile of rocks. The piano grows heavier but you can't put it down. As you grow more exhausted, you break out into a sweat and change the first of eight sets of pajamas, which will all be soaked with a gallon of sweat in under an hour. As you try to “fall” asleep, your muscles tighten, leaving you with leg and arm cramps, neck cramps, and shin splints. By dawn, you feel as though you've been thrown out of a truck 25 times – a truck going 85 mph on a dirt road, filled with pot holes, broken boulders, razors and pebbles. The road is 200 miles long and circles back because tomorrow…you'll be trying to sleep through the madness of being driven back on the same road – because this is your life. This is Fibromyalgia… – Maxine


Educating One Person at a Time

I have to share this one with you. I decided to go to a psychologist. I have been very depressed because of health issues, one of which is FM…During our initial meeting, this psychologist wanted to know what all of my ailments were. When I told him FM was one of them, he said “Well, we're not really sure that's actually a disease you know." I took great pleasure in e-mailing him your website and article regarding what the CDC had to say and the latest about genetics having a part in FM. I can't wait until my next appointment.

Whenever I meet someone who has this type of attitude regarding FM or CFS I have to take a minute to show them in black and white that it really is for real. My body thinks it is for real! It really isn't “all in my head.” …I think all of us who unfortunately have either of these diseases need to do our part to educate people, if only one at a time. Maybe someday they will understand. I can't believe a healthcare professional (a psychologist for 30 years, no less) in this day and age could think these diseases are not real. Does anyone have any feedback on this issue for me?

Note: For some reason, the psychiatry/psychology field seems more determined than other medical specialties to hang on to the notion that FM is “functional” (i.e., all in our heads). Also, the fact that he’s been practicing for 30 years is significant. Fibromyalgia was never even mentioned in medical schools until just a few years ago, and still receives little time or attention. You’re to be commended for making the effort to help educate those who don’t understand.


Consider Your Thyroid

Have you considered at all that many cases of FMS & CFIDS are just undiagnosed cases of hypothyroid? Many, including myself, are now well on the way to better health just by getting a proper diagnosis and appropriate treatment that doesn't depend on blood work, which doesn't show the whole picture in hypothyroidism. Appropriate treatment for those who are hypothyroid means making sure that the patient doesn't have reduced adrenal function before placing them on hormone therapy. Hormone therapy should never be just one hormone alone. Treatment should include the full range of thyroid hormones, such as Armour thyroid, Thyroid-S, etc., not just T4…Many are suffering needlessly from today’s tunnel vision in the medical profession that looks only at TSH tests and does not check the FT4 or FT3…The fact that many of us in the USA are iodine deficient is also often overlooked, as salt reduction is encouraged these days, so many are no longer using iodized salt. Also what is not considered is that iodine enables the receptors to receive and utilize thyroid hormones, and if the patient has adrenal insufficiency, hormone treatment will further strain the adrenals, perhaps pushing the patient into adrenal crisis. – Catherine

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