Back in 2002, a doctor I was seeing took me off my Synthroid (for hypo-thyroidism). I explained to her that my mom, sister, grandma, great aunt, and several cousins took this medication. She assured me that it was not because of family history, but because of pregnancy that my thyroid was under active. Since my pregnancy was over (Layla was 6 months old), she took me off “cold turkey”. I had been taking the Synthroid for about 4 years, (lab tests had confirmed the hypo thyroidism after Riley was born in 1998), but since I was not working in the medical field yet, I took her word for it and stopped taking it. BIG MISTAKE! Within a few months, I could barely get out of bed, normal chores were painful for me, and I could hardly walk up a flight of stairs. My hair was getting thinner, my skin was dry and itchy, and most disturbing of all, I couldn’t carry my daughter around the yard, without this unbearable burning pain up and down my arms! I started to get very weepy about everything, I wasn’t sleeping well, and my memory was getting fuzzy. I even started to stumble over words……and if any of you know me, that is NOT a problem! :0) I finally found a new doctor and went to see him. He was young, and wouldn’t look me in the eye, he just sat at the bedside table with his head in one hand, and a pen in the other, writing things down. At one point I remember him actually shaking his head back and forth, like he thought what I was saying was unbelievable! I was starting to get weepy again, and I think that really agitated him, because he stood up and said, “Oh you just have Chronic Fatigue Syndrome.” I couldn’t believe him, he made me feel so small! I told him I knew SOMETHING was going on, and I wanted to be sure! He sent me to see a Neurologist, and she was ……wonderful. First of all, she gave me an anti-anxiety medication, put me back on my thyroid meds (my blood work was through the roof), and gave me some anti-inflammatory medication. Then she started testing, and testing, and testing- she wasn’t going to quit until she had a good answer! Best of all, she didn’t care if I got weepy, and she was angry that other doctor’s had ignored my symptoms. Finally we had a diagnosis….Fibromyalgia (along with my Hashimoto’s Thyroiditis, that is NOT pregnancy related, but runs in families) I was releaved, but nerveous, because what IS Fibromyalgia or FMS?? She told me it can be caused by sudden trauma to your body, in my case, from when I quit my thyroid meds. Some doctor’s don’t even believe it exists, but it does, I know!! Who wants to walk around with burning pains in their body, brain “fog”, and flu-like symptoms?? Somedaysit even hurts when the cat steps up on my chest, or the kids squeeze me in a too-tight hug. It is not fun, but it is something that I am living with, and just take on a day to day basis. Spring is not a good time of year, because the drastic weather changes tend to send me into flair ups. I am so thankful to Gillian (one of my dearest childhood friends) and her mom, Anne. They went through so many of the ups and downs while trying to get Anne diagnosed, back in the 90’s. It was very new then, and doctor’s told her she was making it all up! I know she has managed to find ways to cope, and finally was able to get diagnosed. Fibromyalgia is a strange world, people with the disorder have bodies that mass produce pain receptors, so sometimes the lightest touch can seem unbearable. Family members need to adjust to the fact that, “even if I look well, I am not”, it has been a long road, but I have not had to travel it alone. God gives me the strength to keep on admist the trials and tribualtions.
Hello.
I have Fibromyalgia set as one of my tags for tag surfing, so your blog came up today. I have stumbled across, with the help of a good friend who has suffered and is recovering from Fibromyalgia, a website and a book which may be of help to you. The website and book cover the Guaifenesin Protocol. If you read about it on Wikipedia, you will not be impressed, but the whole story isn’t on Wiki.
http://www.fibromyalgiatreatment.com/
Wiki — http://en.wikipedia.org/wiki/Fibromyalgia
Search “Deposition Disease”, Guaifenesin or Dr. St. Amand
Additionally, Dr. St. Amand has written a book, along with his medical assistant Claudia Marek entitled “What Your Doctor May Not Tell You About Fibromyalgia”. This will explain, in very understandable language (layman’s terms) what Dr. St. Amand’s Theory is, and how he works with Fibromyalgia patients. He also suffers from Fibromyalgia. This disease tends to run in families, just like Hashimoto’s Thyroid Disease. It is treatable to the point where you may not have to suffer symptoms, but it is not currently curable. Fibromyalgia is not caused by trauma. We are born with it, but trauma can exacerbate the disease to the point where symptoms become overwhelming and very noticeable.
There is also an online support group. They are prompt and helpful.
http://www.fibromyalgiatreatment.com/newsgroup.htm
I have written a post summarizing Dr. St. Amand’s theory and his treatment:
http://elyakatz.wordpress.com/2007/12/31/hope-for-fibromyalgia-patients/
I hope you decide to look into this. If you do, I am certain it will benefit you. I am a fellow traveler, also suffering from Fibromyalgia, and this protocol is working for me, reducing my constant fatique and other symptoms. This is a relief, because I’ve wondered what is wrong with me for years and years.
Don’t ya just love how doctors of all people dismiss the patient in the most pain? My late father was a doctor, and one of my brothers is too. They “got it” just from watching what was happening to me.
And being an “invisible” disability at times, lots of people just don’t understand that looking okay doesn’t mean everything is okay. Ya can’t look at someone and know if they have heart disease or diabetes, either.
I’m training a Great Dane pup to be my service dog: getting me down the stairs without falling and other helpful things.
Hang tough–I don’t know how you’ve managed to keep up with your children! You’re an insipration, whether you know it or not.
–Lisa and Kenai the SDit (service dog in training)
I’ll have to tell my mom to click over to your blog. I am sure she will be glad to see this post.
Thankfully, you’ve gotten the right help, to make your condition more bearable. I am amazed at how much more you hear about FMS now. We have like five people in our church with it, and our group is around 35 people! Crazy!
Have a great day!