From Our Readers – Comments & Suggestions 10-22-08

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Great People, Beautiful Hearts

I am a fibromyalgia sufferer for almost 7 years now. Everyone who has this chronic condition knows perfectly what I am talking about. But what really matters for me is that even in my terrible days, when I have the chance, I come and visit this site and I find such release because there are always great people with such beautiful hearts who really give you comfort and support – moderators, etc. I don’t need to go to any other places because at this site I always find what I really need. Keep up the great job. – Soffy


What Worked for Me

After getting a Flexeril refill, I noticed on the medical info insert that you shouldn’t use this for more than 2-3 weeks. I’d been on it for about 15 years. I stopped taking Flexeril, and immediately felt better. – Suzimi

Note: Flexeril [generic name cyclobenzaprine] is a prescription muscle relaxant that works by blocking nerve/pain impulses to the brain.


Social Security Information

Get the book Nolo’s Guide to Social Security Disability. It is the best money you will ever spend in fighting for your benefits. You can find it on Amazon, and I’m sure bookstores can order it for you.

Some of the chapters just for your info:

Applying for Disability Benefits, Getting Benefits During the Application Process, Proving you are disabled, Who decides your claim, How age, education and work experience matter (important chapter), When benefits begin, Reasons you may be denied benefits, Appealing if your claim is denied, Once you are approved, Continuing disability review, Your right to representation. Then multiple chapters on various qualifying disorders.

It has examples of the forms, definitions for terms and so much more. This book helped me tremendously, and also helped my doctor when it came time for him to write a letter on my behalf. My doctor’s 5-page letter won my case. Even the medical expert and judge said it was the best letter they had seen, and how it helped explain my problems.

I am 56, live in Arizona. I filed 10/05 using Allsup. I was denied twice, and won my case before the Social Security Administrative Law Judge [a few months ago]. I was awarded back to my first day off of work… I also wrote to my congressman when it was taking so long to get a judge assigned.

Much luck to all of you who are filing. Don’t give up hope or the fight! – M J


Advice about Massage with Fibro

I go to massage twice monthly. It took me a long time to find a therapist who actually knows how to give a completely relaxational massage and still help therapeutically. I can’t take much pressure on most of my body so she is very sensitive to my issues and I feel great after having a massage.

The first 4 or 5 times I went to other therapists I would constantly have to tell them to ease up. I always felt sick for days after my massages. They told me it was from the toxins they released, but I know it was from the pressure on my muscles… I think the best thing is to experiment for yourself, and feel free to tell them when something hurts. – terch

Note: One very gentle form of massage therapy that can be excellent for FM is myofascial release therapy. It takes special training, so ask about it before scheduling an appointment.


Great Results with a B-complex Shot

I was recently diagnosed with FMS and am learning to deal with it. My doc started me on shots of B-complex right away and it really helps with the fatigue. I had been taking B-12 in pill form but it helped some but not a whole lot. He said that some people can not absorb B vitamins when taken orally but respond well to the shots. He was dead on right. Sometimes I have to go get them once a week but usually every 2 weeks is fine… – Idahojo

[Note: As Dr. Pellegrino mentioned in his recent Live Chat Q&A, “I like to measure B12 levels and if low or low normal I first recommend sublingual B-12. It gets absorbed well, better than the pills (but not as good as the shots). If the levels do not improve with sublingual form, then shots can be considered.”]

Laughter IS the Best Medicine

I stumbled upon a fun and interesting website. It has stories and essays that are read out loud by an aspiring voice actor. It’s called The Grafton Voice. It is found at One story – “The Mysterious Cheese Ship of the Atlantic” – is so funny I laughed out loud when I listened to it. It’s a silly kind of funny. I figure we can all use some laughter in our lives.

There are more serious essays and stories on the website. [Contributions are welcome.] There is even one essay, “Joyous Living,” that is written by someone who has CFIDS. It’s free and easy to use. It also looks like they are trying to get writers to submit their works to be read on the site.

I know this is not a strictly medical issue, but on the other hand they say laughter actually stimulates the immune system. So in some sense, it is a medical issue. Anyway I just thought I’d pass it along. It’s not often something makes me laugh out loud. – 28 years
Note: This information has not been evaluated by the FDA. It is generic and is not meant to prevent, diagnose, treat or cure any illness, condition, 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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