I have never written a whole blog about fibromyalgia, but here it comes. A few days ago I was on Facebook (where else?) and I was reading some of the posts in Spanish. I belong to a couple of pages for Fibromyalgia. I don't participate in the pages, but I hope that sometimes there will be something new. Spain does alot of research on the syndrome.
On one of these pages a person commented that another person they knew had "died" from fibromyalgia. The Greek chorus of women who would rather live for their pain instead of trying to live for their life all started to post. They didn't like it when I posted that it is impossible to die of fibromyalgia. This is the truth.
I can understand the person being depressed by their pain and situation and committing suicide, which is exactly what this person did. The disease did not kill her. She killed herself. I am not being cold about this. I suffer from fibromyalgia. According to my doctor I have one of the worst cases he has seen. I am his star patient. 10 points.
Fibromyalgia is diagnosed not only by the symptoms, but by 18 tender points in the body. All 18 of mine were inflamed when I met my doctor. A year and a half ago I was a mess. I could barely walk. I was in major amounts of pain. The pain in my back and neck were unbearable. I was exhausted. It was next to impossible for me to dance, to go to the gym. I was furious. I had a life to live.
I knew that there was one doctor here in Argentina who had to know what was wrong with me. It was not the 10 orthopedic surgeons and 2 neurosurgeons who wanted to carve up my back like a thanksgiving turkey.
In case you don't know what fibromyalgia is let me give you a 10 centavo definition. It is something you would wish on your worst enemy. You must really hate them alot, because it is a really painful thing. They really are not sure what causes it or even how to fix it. Now doctors take it seriously. At least all of them except my EX-endocrinologist who was a big idiot. (We won't talk about her, we don't like her.)
The common preconception is that it is a miswiring of the central nervous system. Some people never get the full blown version, and some suffer all of their lives. You can have mini-episodes and never know that you have fibromyagia. They say a trauma; physical or emotional can bring it on. For me it was the car accident here in 2006. I fully recovered from the physical damage to my body. However I kept having horrible pain that never showed up on x-rays. I was lucky that I was referred to Dr. Roberto Soriano at Hospital Italiano. He diagnosed me.
What are the signs? Incredible fatigue, horrible pain in your joints and muscles. Maybe all of them, maybe just some of them. There are tons of websites if you are really interested. You can look into this one Public Health Fibromyalgia or email me. They say 80% are women that suffer from the syndrome. I don't buy it. How many guy friends do you have that have had numerous back or neck surgeries that do nothing for them? They still continue to suffer. I really believe they are misdiagnosed cases of fibromyalgia rather than back problems.
The main reason I am writing about this is because I meet so few women who have this syndrome who want to lead a positive happy life. Most of them are content to live for their pain and use it as an excuse not to have a life. It is not acceptable. I read their posts, I have met them, here in Argentina, in the US when I went back, when they come to visit. Except for a handful of women, what a miserable bunch. There is no factor in age, social class, education, or whether they are from the US or here or Europe. Would you ladies just stop and listen to yourselves?
Get out there and MOVE!! You will feel better. You have to find an exercise you like and do it. I go to the gym even when I don't want to. The gym always makes me feel better. Walking makes me feel better. Laying on the couch is deadly. If my knees are not hurting, then tango of course.
If you have fibromyalgia and your are reading this and still feeling sorry for yourself and saying that your case is worse than mine. You need a new psychologist. You are playing games with yourself. Some mornings the pain in my feet is so bad I can barely get out of bed. But I do. (Try running to the bathroom on feet that are screaming in pain, now that is motivation to move!) I have a dog to walk. Besides who wants to spend the whole day in bed? (Well OK... )
Here in Argentina they automatically send you to a psychologist. I didn't have to go. My doctors were so blown away by my positive attitude and my determination to get on with it. They often schedule me around the same time as other patients hoping they will pick up on my attitude.
Drugs. Oh well. Yes. There are lots of combinations. It is not easy to find what works. The first ones didn't. Cymbalta made me a zombie. It was scary. We joked I was the perfect Argentine girlfriend. I had too many side effects from Lyrica. Then I read a white paper on a drug they were testing in the UK and the US. I was already taking it for my migraine. They were using it in higher doses. My doctor was reluctant.
I switched to the neurologist at Hospital Italiano. He is wonderful. He works with my other doctor. He doubled my dose and added another drug. After 2.5 months I am now mostly pain free. I have days. Few of them. When I do, I have something to supplement what I take. The worst is the fatigue. Anyone who knows me knows I like to run at 100 miles an hour. I can't do that anymore. That kills me worse than the pain.
Some days I have to sleep during the day. So I do. I accept it. I have no choice. The fatigue from fibromyalgia is so overwhelming it would be dangerous for me to leave my apartment. So I snooze with JerryBrown. (My new kitten) I hang out with the Maxinator. Then as soon as I can, I am back in action designing clothes, buying fabrics, going out to coffee with friends, and of course, dancing tango.
I am going to end this by saying again. Fibromyalgia does not kill you. You kill yourself. You choose to take your own life or give yourself a life. When I was laying on the couch with ice in major amounts of pain, there was no way I wanted this to be my life. Why would anyone choose to continue to wallow in misery when there is a better way. MOVE IT BUSTER!!
Deby:
I am a family physician of over 40 years of experiences. Your attitude and response to your chronic condition is what exactly I tell my patients they should do. Regardless of the condition, and especially something like fibromyalgia where a difinitive diagnosis is difficult, the best thing to do is attempt to return to your normal life as soon as possible, even in the face of the pain and fatigue, and live on!
Posted by: Dorian | April 12, 2011 at 02:51 AM
What a great article Deby! It filled me with positive energy this morning. x
Posted by: Muriel | February 28, 2011 at 05:24 PM
Thank you so much for this post Deby - thank you a 100 times over. I wish more people with fibro would write this (and it's probably long overdue for me to write a post on fibro too.) Some mornings I get up and walk like a 110 yr old woman, but I *still get up* - and I still dance. Thank you for the continued inspiration.
***We inspire each other, you are one of the only other women I know who "keeps going"***
Posted by: Mari | February 28, 2011 at 05:09 PM