National Fibromyalgia Association Coping Seminar – Lynne Matallana
This post is a continuation of my post on the National Fibromyalgia Association Coping Seminar in Seattle. Here I will further discuss what Lynne Matallana spoke about at the seminar.
After being reminded of the location of her power point clicker, Matallana said, “I have to be reminded of things.” I started smiling and thought, “Don’t we all?” I knew almost every person in the room could completely relate.
Although most of us have a tough road to travel before getting a fibromyalgia diagnosis, Matallana’s was certainly the roughest I’ve heard. During the period after she became ill, but before her diagnosis her friends slowly started disappearing. She began working from home more and one day her business partner showed up at her house while she was on the phone with a client, work files spread upon her bed. Her business partner collected all the files from the bed, told Matallana she was, “no longer valuable to the organization,” offered a check for a few thousand dollars and left. You should know that Matallana had helped build the company to a 5 million dollar public relations company. The check was not a fair offering and I’m assuming it felt like salt on a wound.
Matallana’s road continued on, seeing 37 doctors and specialists with no answers. At this point she was fairly despondent and starting to wonder if it was all in her head. She ended up admitting herself to a mental institution where she spent 1 week. Luckily the psychiatrist there realized something more was going on. He told her that she had anxiety and depression, but she was also in pain and no doctors were helping her feel better. Almost as importantly, he told her she WAS valuable. Matallana was sent to a new, younger doctor who pledged to help her, although he wasn’t exactly sure how. He was the first doctor to even mention the word fibromyalgia!
As Matallana researched fibromyalgia online she found more people felt the same way that she did. She became passionate about helping those people and created the NFA. Matallana spoke of the importance of living your life with the 3 Ps: Passion, Purpose & Pleasure. She said by living this way she has realized that sometimes it just makes more sense to enjoy a movie than to wash the dirty dishes. I often ignore the dirty dishes to enjoy time with The Helpful Hubby in the evenings, so I highly suggest trying this. Matallana also suggested that at the end of the day everyone write down 1 thing that made them happy and 1 thing positive that happened to them.
She closed by saying that she “could talk for hours and hours” of what she has learned over the past 13 years living with fibromyalgia. I think many of us feel the same way. Stay tuned for future posts on my interview with Matallana as well as what Martha Beck spoke about at the NFA Coping Seminar.
Lynne Matallana, NFA President & Founder
Posted: August 23rd, 2010 under Advice, Living with Fibro, Organizations.
Tags: Fibro Fog, Lynne Matallana, NFA
Comments
Comment from Selena
Time August 26, 2010 at 2:51 pm
Washing the dishes is one of those things that just makes my fibro pain so much worse. My solution: paper plates! 
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Comment from Leanne
Time September 3, 2010 at 1:26 pm
I have been helped about 95% by Gabapenten. I wish all of you would be able to try this medication and find the relief from pain that I have found.(Truman
If anybody would like to know more about my experience with Gabapenten, feel free to write me at [email protected]
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Comment from Carol
Time September 3, 2010 at 5:43 pm
I agree, paper plates! Also, I throw Everything in the dishwasher, or heat up a frozen entree and throw away all.
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Comment from Marie
Time September 5, 2010 at 8:55 am
I have tried, gabapentin, lyrica, venafaxine, ultram, flexeril, percocet, oxycontin, ms contin, and now methadone along with prozac, and amitriptyline and no relief. medications just don’t seem to affect me and I am so dissapointed.
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Comment from Sheron
Time September 5, 2010 at 11:53 am
I gave up Alleve about 15 years ago because it wasn’t working anymore. On vacation I ran out of a prescription, and I picked up Alleve out of desperation. It worked better than what I had been taking! Why? That with the occassional Neurotin is working right now.
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Comment from Scheryl Alexander
Time September 7, 2010 at 2:22 pm
I have lived with this pain for 30 years, It took 24 years and many doctors to get a diagnosis, I could write a book about my life or lack of life with fibromyalgia
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Comment from Barbara
Time September 7, 2010 at 3:48 pm
I am in the same boat as Marie. I have tried what seems like every medication known to man. Nothing really helps, plus I have had toxic reactions to 21 pharmaceutical medications and my doctors are afraid to recommend any medications now. In addition I am allergic to 29 foods and 19 geophysical stressors. Right now my only pain relief comes from my hot tub and that lasts a
maximum of one half hour. I have tried alternative therapy treatments like massage, biofeedback, reiki, acupressure,etc. and the pain remains. I am ready to look into acupuncture but what comes after that if it doesn’t help?
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Comment from Felicia Fibro
Time September 7, 2010 at 10:30 pm
As science advances and we learn more about fibromyalgia, there are bound to be more, and better, treatment options for us! Don’t give up!
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Comment from Dian
Time September 8, 2010 at 4:31 pm
Has anyone tried Effexor XR? When my doctor put me on that, I tried it first in the evening. That next morning, all of my roaming pain left. I still have a lot of issues, but that pain relief made quite a difference for me. The doctor said that Fibromyalgia patients don’t get that deep sleep, and this med puts you in that deep sleep so that your body can heal. He said that is when your body heals..I thinks it’s tha Alpha stage? I do sleep better while on it, but still need my Ambien. I tried the Lyrica, and I couldn’t sleep at all on that so switched back to Effexor.
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Felicia Fibro Reply:
September 9th, 2010 at 10:16 pm
I have not tried Effexor XR, but thank you for sharing your experience with it, Dian! Ambien works well for helping me sleep too.
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Comment from Carole
Time September 9, 2010 at 9:58 am
Along with all the million other symptoms of FM, I have very severe neurological symptoms that I am currently seeing a Neurologist about. Does any one else have continual strong tingling throughout your entire inner body, and very strong constant pins and needles on my skin throughout my entire body, strongest in my feet, lower legs, hands, arms and face. It is st strong I can’t stand to be in my own skin. If anyone has this and has found something that helps (besides a jacuzzi tub . . . . the only thing that takes my mind off of it), I would really appreciate your input.
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Felicia Fibro Reply:
September 9th, 2010 at 10:50 pm
Besides the tingling I get with shooting pains, I only get strong and painful pins and needles in my feet. The only thing I’ve found that helps that is getting off of my feet and also soaking them – same ideas as the jacuzzi. I’m sorry you have to deal with that pain all over, Carole! I hope your neurologist can help you find a treatment plan for it.
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Comment from DeeDeeB
Time September 10, 2010 at 1:56 am
I too take gabapentin and other Rx, found a combo has worked for me. Helps not only FMS, but PLMD, RLS too. I think ‘support’ from family/friends who REALLY want to understand what we are dealing with helps.
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Comment from PJ
Time September 12, 2010 at 3:54 pm
I was diagnozed 30 yrs ago with FM, back when some doc’s first reaction was to send patients to a shrink. I lived in near shame for so many many years, feeling inferior. I am so thrilled that people now talk about this disease. I am no longer alone, but I’m so tired of living in pain. I’ve managed to put myself through college and raise a family through all of this, but I miss volleyball and dancing. Everyday things are so hard.
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Felicia Fibro Reply:
September 3rd, 2010 at 6:40 pm
Thanks for sharing your experience with Gabapenten, Leanne!
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