No, You're Not Crazy, It's Called Fibromyalga
It seems to me that it has become an epidemic. I just realized that I know 8 local women with Fibromyalgia. I’m sure I know at least 10 more who are suffering in silence thinking they are crazy and are yet to be diagnosed.
Fibromyalgia(FM) is a condition that is most often developed by women and was earlier called Chronic Fatigue Syndrome (CFS). This is a misnomer because those with FM most often have CFS, but those with CFS don't necessarily have FM . The symptoms of FM are: Fatigue that interferes with work and daily activities; sleep problems (difficulty falling or staying asleep, waking up feeling tired); morning stiffness; headaches; chronic pain; constipation or diarrhea related to irritable bowel syndrome, restless leg syndrome, bruxism, memory problems and difficulty concentrating; anxiety and/or depression.
The condition falls in to the category of Rheumatology, and is often undiagnosed or misdiagnosed because physicians attempt to treat individual symptoms, and not the entire disease. Many, better yet MOST physicians know nothing about FM.
The latest research states that most problems start with poor sleep cycles. FM sufferers have easily disturbed sleep cycles which interrupts the replenishment of dopamine in the body. Without an ample supply of dopamine muscles can not repair the damage they receive on a day to day basis, so each day the FM inflicted get worse and worse to a point of exhaustion and chronic pain. The body also lacks a good quantity of growth hormones.
Doctors will do a back flip and a happy dance if you walk into their office with Lupus, but walk in with Fibromyalgia and they will do all they can to convince you to look for help elsewhere. This is because other than some changes in diet, the only other treatments are pain management, sleep management and triger point injections. Physicians are so gun shy with everyone trying to work them for drugs that many out-right refuse to get into chronic pain management.
What can be done if you think you have FM? Discuss it with your physician and see how receptive and knowledgeable they are on the subject. If your doctor becomes a stone wall, start searching for a doctor with an open mind who keeps up with modern medicine.
FM clinics are starting to pop up around the country. The first and best research clinic is in Portland, Oregon. You will be asked to have some blood work done to rule out some conditions that mimic FM symptoms. You may want to have a sleep study done as well after the diagnosis is confirmed.
An internet search should yield a local support and information group. There is one is Seaside. The groups are a great way to keep up with the day to day advances in treatments.
Fibromyalgia can become a disability. Getting into a treatment regime can hold the condition at bay for many years. Unfortunately, this is one that doesn’t get better on its own, but it can be managed, somewhat.
posted by The Guy Who Writes This at 5:56 AM
24 Comments:
It is a rather agravating disease, which makes it worse! Dr. Kevin Baxter, here in Astoria, is pretty well informed regarding FM and actually goes out of his way to attend seminars on the best way to get a grasp on this disease.
I was diagnosed in 2002. I have thought that I was being pinched from a supernatural source at times, and now have a better understanding of how those ideas came about. The pain is horrid. At times I just want to scrub my skin off my body. At other times the aches are deep in my muscles, all over. And then it goes into my joints and I can barely move my wrists, or ankles, knees or hips or however many spots *it* decides to light on.
I am 45 now and was just halfway through my bachelors degree when diagnosed. I got it last year and now I want my masters and phd. I beat Hodgkins. Man, somedays, though, this one really takes it out of me!
I have two friends that have been diagnosed with FM.
One is managing, but the other has sunk into a drug-induced stupor/depression.
It's a frightening disease and one that is so misunderstood. Especially in our part of the country.
What a great post!!
Thank you for this awesome post and for having no qualms about wading into such potentially controversial territory and for taking on a topic which, for some reason, is somewhat akin to a taboo….but like so many taboo’s actually suffers from a general lack of knowledge about the subject.
Thanks also for going out on a limb and doing a piece of public education around such a sensitive, oft misunderstood and maligned, topic. For you see, if the doctors tiptoe around even a mention of this condition…..then the general public is not going to touch it with a 10’ pole…..because, after all…doctors are gods and know everything….don’t they??
Great picture to go with the post as well Guy……..
Thanks for all your great comments.
So Baxter has come around, eh. It's about time. He used to be a strong disbeliever.
I feel badly for the women I know with this condition because people around them who don't understand the condition are not at all sympathetic. They think these women are either weak, crazy or addicted drug seekers. Absenteeism in the workplace is high among people with FM, so their employeers don't like them either.
Seeing them in the pain they endure on a daily basis is so hard to watch, knowing that little can be done. Some seeking relief have been known to die just seeking relief. There was one well known woman in our community who died last year because she used a heating pad on top of her duragesic pain patch. The heat disbursed the drug at a higher rate and she never woke up. It was a so sad, and she is missed to this day.
I wrote this so that more may react differently when they realize that someone they know may have this condition and understand what it is about. I also worte it for those who have had this problem, yet never realized that it is somethings other have and it has a name. There is support out there and it is growing. It was only last week that the CDC finally recognized CFS, maybe next week they will discover the FM is real as well.
Excellent post. I'm ashamed to say that I doubted FM when it was first being diagnosed. Educating the public is important. Nice work, Guy.
Thanks, Darlin. I know you can relate to pain from being a dare devil ; )
My mother-in-law has FM, and here I just thought she was a hypocondriac. It's always a very convenient excuse for her when she wants to get out of doing things she doesn't really want to do.
See, Zoe, now you can make some points with her when you show some empathy for her situation.
I by the way an getting a lot of email from people too embarassed to post here because they now fell bad for judging people with this condition. It's not too late to turn things around. You now have an understanding that you didn't have before you read this.
Or print this article out for anyone you know who you suspect may have FM. They may not have been diagnoised and think they are crazy trying to understand why they are in constant pain when no one else seems to be.
Hi, I ran across your helpful post, and was wondering if you could help...
My mom lives down at the coast (Rockaway actually) and she needs to go get diagnosed for possible fibromyalgia.
She's had symptoms for a couple years now, but she is afraid of being treated poorly and so she has avoided going to any doctors.
Now, she can barely walk most days, and goes to bed by 6pm at the latest every day it seems to me. (though I am in Portland.)
Can you possibly recommend a doctor or rheumatologist who will handle her and treat a possible FM diagnosis with real consideration?
I'm afraid that if I hussle her in to some doctor who then dismisses her symptoms, she will give up altogether on seeking treatment... and my mom is way too young to be headed toward a possible wheelchair over this.
Obviously, an Astoria doc would be better for her than Portland, but I dont know if there is anyone along the coast who is qualified to diagnose...?
Any help would be appreciated so much.
Rachiel
Rachiel,
Please write me at bbpress@intergate.com
I have names for you that I would rather not put on the net and I can better explain the process for disability compensation and the other resources available.
actually being diagnosed was a huge relief. i thought i was a hypocond. trying to manage is another thing though. i am looking for some treatment ideas.
The medicine Lyrica has now been approved for treatment of FM. See if you can get it from your doctor. It relieves many of the symptoms. It is amazing. It takes about two weeks for it to start working. Good luck.
im on cymbalta and seroquel. for pain i get a biweekly massage and visit the chiropractor as needed. i take tramadol and use pot when it gets bad.
We've been on that route in the past. If it's working for you, good, but if it stops go for the Lyrica. It's night and day.
my doctor says she thinks but is not sure if I have FM and just keeps putting off everything I tell her about how painful it is, how do I go about finding a doctor who will take care of my pain. I am not able to sleep at all at night as I am in so much pain, Please help me.
I would like to know if there is any kind of over the counter medication that will help with pain until the doctors decided to do anything for my FM thanks
First, look on the internet and see if there are any Fibro support groups in your area. If so they know which doctors realize this is a real condition. If not, this illness still falls under the category of rhumatology, so call a rhumotologist and ask them if they treat Fibro.
There is nothing over the counter that will help. Lyrica is the only thing that seems to work on many levels these days.
Sleep is the root of FM. You don't sleep well and your body doesn't recover over night. It makes you hurt and lose more sleep. You may want to find a sleep specialist
Thank you everyone for your blogs. I was diagnosed last Nov. and was very ill all winter. The one thing I have experienced is that people in my family just don't understand what I am going through, especially my husband. Have any of you experienced this?
I hear from people all the time and it isn't just husbands and families, it's friends and co-workers and employers.
I learned long ago that those with fibro can't and shouldn't be pushed or shamed into fitting in like they were normal healthy people. Personally I've taken on all the work around the house and I am happy when my wife has enough steam to help out in some way, and though she may feel good at the moment, it is hard for her to realize when she is over doing it and will have to pay the price tomorrow.
You should really find a local support group, because they may be the only support you will have until your family understands just what is happening to you.
My name is Dee and I live in Maryland. I was recently diagnosed with FM after being told I had Lupus for 6 months turned out to be several false positives. My life has been turned upside down. I've been on Tramadol, Cymbalta, Lyrica and had trigger point injections and massage therapy. NOTHING WORKS! I am currently using the Lidodern patches and they only help a little. No matter how I try to push pass what I feel (and it's bad) my body just won't let me. I can barely walk now and have been on disability since April 08. My job of course, never understood and yes, I thought I was going crazy. It's been really really hard coping with this. I've seen so many doctors and it took six months to get a diagnosis. I saw an awesome doctor at Washington Hospital Center in DC but he's basically told me there is nothing more he can do. WOW -- now I just pray alot! My family has no clue and jsut keeps telling me to take some Advil or Aleve. Need I say more? Thanks for the post it has helped.
Dee, Hopefully you will go into remission one day. Doctors love to diagnose Lupus, it's a cash cow. They hate FM because they can't really do much. My advice is to find a physical therapist that understands FM. Also have a sleep study done. Getting good sleep is key to getting things to move in a positive direction. See if there is a FM support group in your area. If not think of starting one, but don't do it alone. Fibro fog makes thinking and planning difficult.
Thanks for the reply to the article.
Thanks for replying to my post. I had a sleep study done and was told I have sleep apnea and brauxism and it noted my leg movement all night. I did not sleep much at the first session but slept all night at the second one because I had been up for several days. I've had insomnia as long as I can remember so I'm using my CPAP machine and have been able to come off of my blood pressure medicine so that's great. The problem is I also have carpel tunnel in both wrists, along with FM, several disc problems in my lower back and severe arthritis in my knees. I can't focus on one without the other, you know. My Rheumatologist wants me to see a neuropathy specialist because I told him that the pain often makes me feel like I'm plugged into a light socket and its weird sharp shooting horrible pain up and down my arms and legs. The bottom of my feet feel as thought they have caught on fire and then it goes away in about 30-40 seconds but during that time it's horrible. When I lie down at night my legs swell terribly and I just don't understand it. I cannot sit for more than 30-45 minutes at a time because once I stand up my legs are gone. When it gets really bad for me the only thing that brings immediate comfort is sitting in the jet tub with the water as hot as I can take it. It takes the edge off :) and then I get out and start all over again. Anyway, I will look for more support I have a neighbor who is a nurse and she has been really helpful since she has FM too. I just wanted to vent a bit. Thanks for the suggestions. Happy New Year!
Dee, you are covering all your bases. By the way there is a new device that you can wear as a quasi night guard that shifts your jaw and can end the need for a cpap, and it will help the brauxism as well.
The problem with sleep and FM is that your muscles don't regenerate or rest if you don't sleep which adds to more pain which leads to more sleeplessness.
The neuropothy is a concern. Have you H-A1C checked. Not that you need anymore problems. I hope for you remission.
For those of you with FM, as most of you all know, SLEEP is crucial in managing FM. In conjunction to the topic, Sleep Medicine Network located on Exchange street in Astoria has provided a friendly environment for those who have FM to have a better sleep quality. Please visit :www.sleepmedicinenetwork.com as the site will provide information about ORAL APPLIANCE THERAPY to treat patients with sleep apnea. Please call them if you have any further questions, 503 255 1200.
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