From Our Readers – Comments & Suggestions 04-15-09

Free Govt. Cell Phone Program Expanded to 10 States – 14 Soon!

The new government program for a FREE cell phone and FREE 42 minutes per month for low income people is now available in more states. This is a government sponsored program in partnership with Tracfone. It’s like Food Stamps for the phone.

If you qualify for Food Stamps, you qualify, and if you are low income but don’t get Food Stamps, you should still qualify. They do it by income. If you are on SS, you pretty much qualify.

You get a free cell phone. You get 42 free minutes per month. The minutes carry over to next month if you do not use them. Long Distance, Roaming, and Text messages are included. The program is for one year, then you have to reapply. They send you something when you are close to expiring.

The application is very easy to do. They want Social, home address, phone, how many people are in your household, and proof of your low income. All you need to send them is a copy of your SS letter and if you are on other low income programs, just copies of those award letters. That’s it.

To check if the program is available in your state, go to:
You can also call: 1-800-977-3768

The program is now available in the following states:
* Delaware
* Florida
* Georgia
* Massachussets
* Michigan
* New York
* North Carolina
* Tennessee
* Virginia
* Pennsylvania

And it is coming soon to:
* Alabama
* Connecticut
* District of Columbia
* New Hampshire
– TB


Any News about Savella™?

Q: The latest drug to be approved for prescription to Fibromyalgia patients – Savella [milnacipran] was supposed to be in pharmacies by late March. Has anyone tried it yet?

A: About a month ago the drug’s maker (Forest Laboratories Inc. & Cypress Bioscience Inc.) announced they wanted to make a (“minor post-approval cosmetic formulation change”) – i.e., change the way the tablet looks. For this they need FDA review & approval, and now expect to hit the shelves by “mid-2009.” The drug helps maintain concentrations of two brain neurotransmitters – norepinephrine and serotonin – by blocking their “re-uptake.” It has been approved for prescription as an anti-depressant for some years in Europe (brand name Ixel) and elsewhere.

However, we must add this reader response to the question, just received:

A: For those asking if anyone has used the new med for fibromyalgia called Savella. Would you be able to pass this on. I been on the Savella Clinical Trial Meds for 3 years and let me tell you I have my life back. I was diagnosed with fibromyalgia about 12 years or so ago. I do have some bad days but not like before. I couldn’t work, no less get out of bed. About 2 months after I started taking Savella, I was able to go on a seven-day cruise with my family and was actually able to climb Dunns River Falls. I am able to work full-time again. I actually got to go roller skating after not being able to in so many years. I just wanted people to know that Savella saved me and hope it will help everyone who is willing to try it. Thank you for letting me tell my story. – Karen


Therapist Helped Me Cope with Wife’s Fibro

My wife has fibro. She had it long before I married her, so I knew what I was in for. That doesn’t mean it doesn’t get frustrating. While I know our dealing with our spouse’s disease is nowhere near the pain and suffering of having the disease, it does take a toll on us. I’m not saying “poor us,” but we do take on a burden in this as well.

I recently went to a therapist because I felt like I was a bad person for being frustrated and feeling like sometimes I’m the only one contributing to our partnership when things get bad. I had to learn to get frustrated with the situation and not take it out on my wife.

I also had to learn that it was OK to get pissed off, but that I need to remember to do it in a healthy way. – W


Blue Light May Be Lifting Mood

About three months ago I bought a blue spectrum therapy light. My doctor had recommended this for resetting my circadian rhythms. After the first week, I noticed a lift in my mood which I did not expect. By week two it was starting to help me get up in the morning. Relatively speaking, that is. I felt a bit more energy.

Then the light malfunctioned and I had to send it back. I received my new one only last week as I had procrastinated sending the other one back. Once again, I have started feeling better as far as any depression, but resetting my sleep cycle has only just started. Now this could certainly be the placebo effect, but I was not expecting the positive lift in my mood. I did not feel that depressed.

Years ago I rented the lights at the medical supply store. They were the full spectrum and the light box was huge! I am not sure that you can still rent them. If I remember correctly, I did not use them long, as I was getting headaches from the bright light, so did not notice any difference.

However this one is tiny, comes with its own little case and it was only $150 which would usually be a lot for me but I got some money over the winter holidays. It is blue light spectrum, which is supposed to be the light that is the most effective and has not caused any headaches.

I have not seen a reduction in my flares as of yet and it will be interesting to see if this affects my pain level if it helps with my sleep. As usual we all differ in our response to treatments, but wanted to pass on my experience. – G


Thyroid Information and Physician List

Good info here for anyone looking for a doc who prescribes ArmourR Thyroid. I’ve been on Armour since 2001 but I’m looking for a doc even MORE versed than the one I see. Anyway, Google:

Then scroll down to “Information for Patients.” Once you go there you’ll get the next page that has a Green Tennis Ball in the upper right hand corner that says “Physician Locator”… Go there and then you follow the directions by adding your Zip Code and miles willing to travel for an Armour doc.

This is a service of Forest [Laboratories]. I found a lot of docs in my town that I didn’t know worked with Armour. So many docs do not and keep pushing Synthroid. – J


Peppermint Oil Helps My Achy Muscles

I have just recently found this site and I want to tell all of you that some of the messages that have been posted [on
the ME/CFS & FM Message Board] have already helped me tremendously. I found something that has helped me with the pain at times. Peppermint oil application to the body really helps soothe my achy muscles. This may not help everyone but if it just helps somebody, then that is what we are here for. Keep posting and I will surely keep reading. This seems to be the best place and there are some really educational things on here. – F


More on Drug Ads

Re: The letter “Believes FM Drug Ad Does More Harm than Good”

I have two reactions to the Lyrica® ads. First, they have done a lot to increase public awareness of fibro. That is the only positive thing I have to say. On the negative side, I am so tired of everyone I know who is aware of my fibro problem telling me that if I took Lyrica, it would help. They believe what they hear in the advertisement, and indicate that I am remiss in not trying it. It makes me want to scream. I grit my teeth and explain that my MD is not one to jump on the bandwagon and start me on a drug that has not proven itself well enough in the medical literature. The Lyrica ads just promote the idea that there is a magic bullet to deal with fibro, and the bullet’s name is “Lyrica.” – SS

I don’t like any advertisements of prescription drugs directly to the public, and I don’t care for the Lyrica ad, either. However, Lyrica has helped me a lot. I had a huge decrease in my pain almost immediately. In addition, as long as I maintain good sleep hygiene and take my sleep meds, Lyrica has made a huge difference in my sleep. On the other hand, I do worry about possible long-term effects there might be, the same as with my other meds. – P

The people in the Lyrica ads all seem to live a regular normal life, traveling, shopping , gardening and working. I have lived with fibro for over 30 yrs and believe me it is no normal life if you have fibro. I take Lyrica and it does not help much at all, and am trying slowly to go off it. My rheumatologist swears it helps 90% of his patients lead a normal life. I find that hard to believe and lost a lot of trust in him when he said that. I also wonder what all these meds are doing to us long term. – FB


Dr. Pellegrino’s Fibrofog Info – Wow!

Re: “Managing Fibrofog – The Cognitive Dysfunction of Fibromyalgia.”

Thank you! This is the best written article, for explaining how Fibromyalgia works, that I have ever read. Thank you for being more concise, the use of less medical terminology, to describe things.

This is something I could share with friends who don’t understand, but who want to. It’s also something that a person with Fibromyalgia can actually slog through and understand, when they are too tired for all those other articles. Yay for you! – Artilla


Falsified Pain Drug Studies

“MD accused of falsifying findings in 21 important pain-drug studies”

“Hoodwinked,” or “complicit with”? How can the “medical community” be “hoodwinked” by 1 doctor?…. This cannot be true, and even if it were, that means the “medical community’s” system of evidence and criteria is so poor, that any single guy can destroy the entire world with fake studies. – Dan

FM and pain. Is this the idiot that did some “research” that says narcotics don’t work for FM pain? Just wondering, because if you talk to the hundreds of people I have over the last 5 years, you will find the statement is false. Narcotics are the only thing that helps most of us. Glad I don’t have a doctor with no compassion and he does not label me a drug head for needing narcotic pain meds. Wake up in the Fibro world! – LB


Women Fibromyalgia Sufferers and Heart Attacks

Re: “Women and Heart Attacks – A Nurse’s Heart Attack Experience”

Thank you very much for this. It is useful to hear a first-hand account of a woman’s heart attack. I’ve been to the ER four times since the onset of my fibromaygla. Three of those were for symptoms of a possible heart attack. Also, I’ve had heart catheterization, as well as nuclear treadmill tests and so forth, all of which show my heart to be in good shape.

Unfortunately, my biggest fibromyalgia symptom happens to be crushing chest pain, and each time I get it, I feel weak all over. My second biggest problem is heartburn and indigestion. Also, fibromyalgia comes with new symptoms that pop up from time to time. While I agree with the author on the necessity of going to the ER, the fact remains that I cannot go there every week!

So I can just listen to my body for the kinds of symptoms the author describes and whatever else I read about heart attacks in women. I also listen to my body for chest pain, heartburn and indigestion that is different from the kind I usually experience. – PS
Note: This information has not been evaluated by the FDA. It is generic and anecdotal, and is not meant to prevent, diagnose, treat or cure any condition, illness, or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.

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