BlogHer - Fibromyalgia: An Invisible Disease? An Imaginary Illness? If you have it, it feels pretty darn real. - Comments

Doctors could cooperate.

Wilma Ham — Sun, 02 Nov 2008 14:40:56 -0600

How wonderful to have found a doctor who is actually cooperating with you and of course I am sorry that it still leaves you in pain.

I have always found it strange how doctors have willingly taken over our own healthcare.
That is a lot of responsibilty that they actually and obviously cannot handle.

Why not make a model that includes us and other practicioners together?
How can they know it all on their own?
And they are only trained in looking at health in a certain way and that way hardly ever includes food or other alternative methods of looking how the body, mind and spirit works.

I love the internet and all the information that is available, At least we now have a way to reclaim that responsibility for our own health as we can have access to all that no longer sacred medical knowledge and other people who are dealing with the same issue.

Best wishes,

Wilma

www.wilmasblog.com

Thanks for linking to me

LittleMiss — Sun, 02 Nov 2008 12:34:34 -0600

Hi Catherine,

First, thanks for linking to my blog. I haven't updated there in a long time, not because I'm well, but because it seems my fibro had been in remission for quite some time or the symptoms were so mild they weren't at the forefront of my mind. So there is hope. Until this last week. I had a nasty flare up, but I'll blog about that shortly. I sure know waht you mean about the flare up after hitting the tender points. Ouch. I'm sorry you have fibro. I do think there's something about the nutritional aspect triggering the flareups, that's for sure. I'll be researching that a bit more and doing some self-testing.

Hope you are having a good flare-free day.

Claire (aka Little Miss)

Something to check

ballardia — Sat, 22 Mar 2008 23:14:51 -0500

You might consider getting an IgG and IgE blood test for food allergies. Food allergies can trigger a number of problems, including fibromyalgia.

I've suffered with joint pain and a number of other medical annoyances for years, never with an official "diagnosis". I finally resorted to getting the testing done, and discovered my body triggers a strong immune reaction to dairy products. And of course I was having several servings a day!

I'm two days in to "dairy-free"; it's a bit of a pain to adhere to, but I do feel a bit better, and anything that helps me stay off of medication is a big plus.

Fibromyalgia - help and hope - long post!

Dr. D. Light — Fri, 21 Mar 2008 00:03:08 -0500

Hello Catherine,

Wow! I just joined BlogHer today. And, this is the first post I'm responding to.

I can totally relate to where you are coming from. Approximately 5 years ago, I had a doctor in a military ER tell me 'You have something like Fibromyalgia.'. Great. I am a pre-med senior. I also have a master's of science in the field of behavioral genetics. I will state very clearly, that I could not pass any of my pre-med exams with a 'something like....' answer!

Nor, could I counsel or work with my clients with a 'something like....' diagnosis. Of course, that could be because all through my behavioral genetics program we were told 'You do NOT 'practice' behavioral genetics after you graduate and get certified. You had better _know what you are doing_!'

After several years of asking the doctors to decided "Is it, or is it not Fibromyalgia?" - if it is, then let's find out what we can do. If it isn't then let's find out what it is!

I have finally 'forced their hand' shall we say, and have an 'official diagnosis' of fibromyalgia. Plus arthritis, TMJ, degenerative disc disease (with pinched spinal nerves from L-5 through and including the sciatic nerve, migraines and tension headaches, GERD - an ulcer and a hernia, asthma and tendonitis, low thyroid, and something called Bastrup's Syndrome. (To name just a few!)

The military doctors had sent me to a neurologist for the headaches. He put me on Co-Q10, Magnesium and Vitamin B-2. He also recommended physical therapy due to the pain in my legs that felt like someone had shoved bamboo skewers between my toes, then radiated up my leg, while my knees felt they were going to collapse any second.

Back in approximately 1999, another military doctor had me have an C-scan (I think it was) on my legs. He found bi-lateral tumors in both knees, which he believed to be benign, but recommended they be followed at least every 6 months. It's been about 9 years now, and the military docs haven't done a single follow up on my knees.

Anyway - just want you to know you aren't alone. (I have also had vision problems, including amblyopia severe enough to be categorized as 'legally blind' in my left eye. (Another 'invisible handicap'.)

Now, for the good news!

Lyrica was originally developed for people who have RLS (Restless Leg Syndrome). However, I learned from reading an article in the Arkansas Democrat Gazette last year, that in studies, those who were in the study group who also had Fibromyalgia, also reported a reduction in the severity of their Fibromyalgia symptoms! Ads that are now on TV also let you know that it is the ONLY medication which has been approved for use in treating Fibromyalgia.

And no, this is not an Advertisement for Lyrica. I use it though. I'm not sure how much it has helped. I also signed up on the National Fibromyalgia Association web site. They sent me a little flyer, which was quite informative. But, their subscription/membership rates are a tad more than I feel comfortable spending at this point in time.

I too worry about the genetic implications. I have several children, and now grandchildren. Not only do women get it, but boys and men can get it too! My Mom had cancer twice, and her sister died from breast cancer. And, my Mom and both grandmothers lived into their mid to late 80's. No mention in any family history that I have been able to access, have I been aware of any one else having symptoms of this!

I often wonder if it is linked to our dietary habits, and the various pollutants we have grown up with?

Although I have plenty of 'diagnoses' which qualify me for a "handicapped" tag on my van, I thought it was interesting that my P.A. had noted 'Chronic Pain' and checked 'Permanently Disabled'.

The other things I can tell you, that I hope you will find helpful - swimming seems to help. Laughter is always good medicine. Finding something you can focus on - other than the pain, is also good. Putting a small pillow between your knees when you sleep is helpful. If you are married or in a long term relationship, a good orgasm also releases some very potent endorphins, which help to ease the pain as well!

When you hurt, STOP! Get rest. Don't apologize for your illness! Drink plenty of water, and fruit and veggie juices. Make use of the crock-pot if you have one. If you don't have one, get 1. You can cook once, and eat for the better part of the week. Soups are good too.

Do what exercises you can. (I can't do much, but I keep a small 1 lb. weight in my closet, and I do 10 reps of curls with each arm, and 10 reps of vertical stretches on each side. I try to do this every day. (I don't want 'bat wings'!) Also, when I have to use my wheelchair, I will often use my feet to propel me where I want to go. It may look 'strange' - but it is good for me to get some circulation going in my legs, without the weight pressing on the nerves in my torso as much.

I also have a few of those small 'travel pillows' (child sized) that I keep in the van. I can put one behind my back while I drive, or am being driven. I also take them to meetings with me. Some chairs and benches don't provide the support I need, in order to sit up for more than a minute or two. It may look 'weird' - but it sure beats being on bed rest for a week to recuperate!

I'm also all for 'blinging up' my 'accessories'! I have a marvelous walking stick, that I use for 'short trips' - like from the house to the driveway, or the parking lot to inside the store where I can get a motorized cart. I originally got the walking stick when I was a Cub Scout leader. I have my leatherwork on it, an Eagle symbol (Scouting), and some of my 'achievement beads' from my scouting days. I also have been adding my own 'achievement beads', some are bells! Some are just pretty pony beads, that I can lace onto the leatherwork. I don't often go anywhere, without someone commenting on how much they like my walking stick!

I also have a cherry red walker, with a seat and a basket. I use it for slightly longer walks. Not much longer, but it is a help! I'm thinking of wrapping some silk ivy along the legs, and back bar. Now, for the wheelchair - having worked with the handicapped in the past, and doing research on public relations and the handicapped, I am seriously considering 'blinging up' the chair, too! If I can get enough energy, I might even hot-glue some silk flowers to the axle where the wheels join the body, installing a kids bicycle bell on the right side, by the arm rest, and putting some pin wheels on the upper handles (where my husband or son would push me, when we need to go their speed). I've even thought about looking for some of those lights that some of the kids put on their bike spokes, and maybe even an old playing card clipped so that the spokes on my chair will make noise as I wheel around!

I know that Fibro, CFS, TMJ, and everything else can drain every speck of energy and sometimes even the goal of 'having some fun' from you. But become visible! Do what you can to get a 'Whee!!!!' - that won't hurt you even more! (You should see me coast downhill in Michaels parking lot!)

Two last things.

1 - Depression is always waiting to engulf you. Psychology is based on 'self-reporting'. The facts are that Fibro, and many other of our 'invisible diseases' do in reality change our lives, and take away many of our previous pleasures. Can't change it. All the talking in the world is not going to 'make it better'. And, a visit to Disneyworld is a LOT less expensive than the same amount of time in the hospital - and probably 10 times more healing!

2 - ANY TIME, you want to talk, or compare notes - feel free to contact me!

P.S. - The "Dr. D. Light" is a psydonym!

May your relationship be filled with bliss and delight!

I have heard that too...

Catherine Morgan — Tue, 18 Mar 2008 13:50:37 -0500

I have also heard that Fibromyalgia could be hereditary. Although, I hope for my daughters sake they are wrong about that.

Thanks for commenting...I wish you didn't have to feel my pain.

Contributing Editor Catherine Morgan
CatherineBlogs, The Political Voices of Women, Care2 Election Blog

Fibromyalgia

jdjferg3 — Tue, 18 Mar 2008 12:55:39 -0500

Hi Catherine, I know what you mean! I have Fibromyalgia, depression, and headaches. The doctors believe my Fibromyalgia was brought on by a car accident I was in - in 2005. But, my mom also suffers from Fibromyalgia, CFS, and Chronic Pain. So, I definitely a believer that Fibromyalgia maybe Hereditary.

I just want to let you know I feel your pain!

Thanks so much Jill...

Catherine Morgan — Tue, 18 Mar 2008 10:07:33 -0500

Hi Jill. Thanks so much for your comment, and for being one of the people who helped me out last week. I greatly appreciate you kindness.

Contributing Editor Catherine Morgan
CatherineBlogs, The Political Voices of Women, Care2 Election Blog

Thanks Rachelle...

Catherine Morgan — Tue, 18 Mar 2008 09:27:14 -0500

Hi Rachelle. Thanks so much for your kind comment. I'll have to check out those books. I do read a lot ( or at least I try), so recommending a book is always a welcome.

:-)

Contributing Editor Catherine Morgan
CatherineBlogs, The Political Voices of Women, Care2 Election Blog

Thanks for sharing

Jill Miller Zimon — Tue, 18 Mar 2008 07:15:58 -0500

My husband's cousin's wife as both and I met a 17 year old at the Cleveland Democratic debate who is home-schooled because of fibromyalgia. I developed TMJ in my late teens and I remember how I hated going to the doctor in my parent's health plan because he was treating me for something he didnt' think existed!

You have a lot of company and know how to make people understand what it is you live with. Thank you.

Jill
Writes Like She Talks

The Hidden Illness of Women

Rachelle Mee-Chapman — Tue, 18 Mar 2008 02:27:47 -0500

Catherine,

I'm so sorry to hear that you are in pain. I have chronic migraines and know the complexities of living with a pain condition that most people just don't understand.

A friend of mine who has rheumatoid arthritis gave me two books that helped me with the emotional & spiritual battle that comes with CFS, fibromyalgia and the like. They were--and are--good companions to me.

I know that when you are sick with something like this, everyone has a suggestion and an opinion. So feel free to completely ignore this recommendation!

Much Warmth and Good Wishes,

What Her Body Thought, Susan Griffin

Voice Lessons, and, The Bone House, Nancy Mairs

Rachelle Mee-Chapman
http://www.magpie-girl.com

Fibromyalgia: An Invisible Disease? An Imaginary Illness? If you have it, it feels pretty darn real.

Catherine Morgan — Tue, 18 Mar 2008 02:14:31 -0500

I try not to be a complainer, but last week I was seriously not feeling well. I actually resorted to sending a message to the other women in my community to ask for help (and I've never done that before).

I thought I would take tonight's post to talk about what was wrong with me last week, because I know many women are suffering with the same problem.

The good news is, I finally found a doctor in Florida that believes in my diagnosis. I was only changing doctors because I needed someone closer, I had long since given up on finding a doctor that actually understood or had compassion for my condition. So, you can imaging my shock when I went in for my initial appointment, and the doctor told me that not only did he understand what was wrong with me, but he wrote the book, literally. Can you believe it? What are the chances of that happening? I have to admit, my first thought was...This guy can not be from Florida.

And I was right.

But who cares, he's here now, and he's my doctor.

Yippee!

Well, not so fast.

The bad news is, he found something else wrong with me. I know, just my luck. Other doctors had told me, that because I have a lot of joint pain, I "probably" had Fibromyagia in addition to CFS. But I had never been "officially" diagnosed. And I'm beginning to wish I never was.

I made the mistake of questioning the doctor on his Fibromyalgia diagnosis. I should have known better, but I really didn't want to be diagnosed with another "imaginary" disease. Let's face it, having one "invisible" disease is more than enough for anyone. I didn't want to be diagnosed with another disease that people don't even believe exists. After ten years, I've gotten to hate having to either pretend I am perfectly fine, or explain why I'm not but still look like I am.

But this doctor wasn't going to let me off the hook. He was determined to prove to me that I had Fibromyalgia. So he began to touch what is known as the "tender" points, all eighteen of them. [Let me just add one thing here...The person who developed this lovely diagnostic technique, OBVIOUSLY didn't have Fibromyalgia. Let me put it to you this way - Is a jalapeño pepper "mild"? Is a migraine "uncomfortable"? Maybe if you've never had a jalapeño pepper or a migraine.] I had to admit, the "tender" points were hurting me. And if that doctor touched any of them, even one more time, I would have kicked him in his "tender" point.

So, all of this happened on Friday, March 7th - By the next morning, the pain was radiating from all of these so-called "tender" points and throughout my entire body. I felt horrible, everything hurt me. And I didn't start feeling better until almost a week later. Don't get me wrong, I really am happy that I found a doctor that doesn't treat me like a nut case with a disease that isn't real...I just could have lived without knowing that my random joint pain was really Fibromyalgia.

It would be so much better if these dammed "invisible" diseases, didn't have "actual" symptoms.

Also See:

But You Don't Look Sick

Attitude Is Everything

Lindsey - Living With Fibromyalgia

Sandy - Fighting Fatigue

This Time - This Space

My personal blog - Living With Chronic Fatigue Syndrome

Contributing Editor Catherine Morgan
CatherineBlogs, The Political Voices of Women, Care2 Election Blog