And Now The Defense.....

In the spirit of equality, I felt it was only fair to show both sides of this mycoplasm debate.  Last night I found the two case studies mentioned in one of the documents.  One was done by the US Army and the other by the Department of Defense.  Their findings were pretty similar.  I could only find the Army study again.  Here is the link:

http://www.ncbi.nlm.nih.gov/pubmed/11218212

Last night I was up until midnight (which is really late for me).  I got caught up in a web tornado and couldn't escape.  My husband finally made me turn off the computer.  "This stuff is gonna make you crazy"  he said.  He was right.  I also spent too much time on the computer today.  The more I clicked, the weirder it got.  There are a lot of really scary conspiracy theories out there.  Some of them have some pretty convincing data backing them up though.  I looked at message boards, US patents, blogs and research papers.  All I can say is, I think there are a lot of questions that need to be answered.....truthfully.   And if this stuff is true, we've got a much bigger problem on our hands than we ever thought we did.

I'm still waiting for my doctor to call me back.  I'm still feeling pretty lousy.  I guess she's trying to get a hold of her Rhumatologist friend.  I don't know.

Articles Comparing Gulf War Illness & Fibromyalgia, etc.

The other day my husband was searching the web for information about Gulf War Illness.  He served in Desert Storm & Desert Sheild and had some friends who were trying to find info about it.  He stumbled across some very interesting articles.  Basically, there is a group of doctors and scientists who have a very good theory about GWI, Fibromyalgia, CFS, etc.  They believe that they are actually all the same disease and may be caused by Mycoplasmal Fermentans which is a form of cellular bacteria.  I'm not a scientist so I won't go any further down that road.  Below are several articles from different sources that talk about this more intelligently.  Apparently one Microbiologist cured his daughter (a Desert Storm Vet) of GWI by administering long term Doxycycline (an anti-biotic).  One of the links has a paper written by him that was published in the International Journal of Medicine and another in the Journal of American Medicine. 

I'm always very sceptical about government conspiracy theories, but this seems very plausable.  I'm going to show the articles to my Dr. (who is very open-minded) and see what her take is.  If this is true, this is HUGE!  All the people that suffered for so long could have been healed using simple antibiotics.  Wow!

My husband is going to visit the VA hospital next week armed with the reports.  He has had mild GWI symptoms since he returned from the war, mainly fatigue and depression.  I'm sure they will deny that GWI is infectous and transmittable.  The official CDC definition of GWI is in one of the links.  Of course it doesn't mention Mycoplasmal Fermentans.

CDCs Definition of GWI  http://www.cdc.gov/nceh/veterans/default2g.htm

Article by Marjorie Tietjen "What Chronic Disease Have You Been Labeled With?" http://www.bariumblues.com/designer_diseases.htm

Gulf War Illness Research  http://www.immed.org/illness/gulfwar_illness_research.html  I suggest reading the last artical listed in the "publications" section - "Mycoplasmal Infections and Fibromyalgia/Chronic Fatigue.......".  It's an rtf.doc file.  Also, two articles above that one "Doxycyclene Treatment.....".  is good too.  There are many more.

Mycoplasmas - The missing Link in Fatiguing Illness   http://www.prohealth.com/library/print.cfm?libid=7933

Official Testimony to House of Representatives - Commitee on Government Reform  http://www.gulfwarvets.com/testimony_2.htm

Happy reading!

Pea Soup Thick Fog

I am so frustrated with never knowing where anything is or what day it is or what I'm supposed to be doing when I get somewhere.  Today I got my daughter all dressed up, I put makeup on and I dragged my husband out.  The local newspaper had called for all 2010 babies and parents to meet at a local restaurant to get our pictures taken and have a pizza lunch.  I'd entered the date and time into my Blackberry.  When we walked into the restaurant and saw that no one was there, I had a bad feeling.  I walked over to a waitress I knew and told her we were there for the newspaper picture.  "Oh, that was yesterday" she said.  I looked at my husband who was understandably annoyed.  The waitress told us to go down to the newspaper office and see if they could take the picture today.  The office was closed.  We walked home and I apologized for my screw-up.  The walk had left me physically drained and soaked with sweat.  When we got home I looked at my Blackberry and realized that I had marked tomorrow as the date for the lunch.  Not only had I shown up on the wrong day, but I hadn't even shown up on the date I had put in my calender.  I called the editor of the newspaper when we got home and left a message on his voicemail explaining the situation.  Then I broke down.

I cried hard for about a half hour.  This constant confusion was really starting to scare me.  My husband tried to console me, but I just laid on my bed and played a game on the computer.  About ten minutes later there was a knock on the door.  It was Hannah, our babysitter.  I had asked her if she could pull some weeds for me since the hotels gardens were getting so overgrown.  This only made me cry harder. 

Gardening has always been my zen time.  I love playing in the dirt and experimenting with new succulents I find in the wild.  In the past, gardening has helped get me through some tough times. A few days ago it was really warm so I decided to enjoy the weather out in the garden.  After about 10 minutes after weeding and pruning I was sweating profusely and lightheaded.  I went back inside and felt horrible for about the next hour or so.  Obviously I wasn't going to be able to take care of the grounds while I was experiencing a flare.  I wonder if  this flare will ever end?

Dire Prognosis

I've been researching the causes of Fibromyalgia.  Of course no one really knows the cause for sure, but there are many theories.  Just like the myriad symptoms, theories of it's cause are equally scattered.  I have not found anything however that questions an environmental cause.  I admittedly haven't researched this subject that well but I'll keep looking.  Environmental causes need to be explored.  Unfortunately fibro doesn't have much history since the diagnosis was only defined in the 1970's I think.  There doesn't seem to be any data as to whether instances of fibro have increased, decreased or stayed the same.  I learned that in the past, especially since most sufferers are women, Dr.s wrote the symptoms off as hypochondria or some other psychological disorder.  How horrible that must have been.

I haven't really found anything very encouraging.  The consensus for many is that you just have to modify your life.  That there are just some things you can't do anymore.  This is so depressing.  It may be true, but I'm just not ready to admit it yet.

I went to the Dr. today.  She's a GP so she doesn't know a lot about fibro.  In fact she said that she's learned everything she knows about fibro since treating me.  Since I can't afford to go to a Rheumatologist, my GP sees me, I tell her what's going on, then calls her Rheumatologist friend and he advises her on how to treat me.  She said she'd be calling me within' a week.  It's a pretty pathetic system, but it's so nice of her to make the effort for me.  She's very understanding about my financial situation (which is pretty bad).

Sleep is Key!

I had a great nights sleep last night (my daughter slept through the night).  I feel pretty good today.  Sleep is so the key to how I feel.  Trouble is, with a baby and the sleep problems that come with fibro, I don't always have control over how much sleep I get.

I was reading someone else's blog about fibromyalgia and she mentioned that there were new studies that show obesity as being a factor in controlling the disease.  She was of course furious with these "findings".  I posted a comment on her blog  conveying my anger at this idea as well.  Then I did some googling on the subject.  I don't know who paid for these "studies" but I think they got ripped-off.  Obviously obesity would be a major factor in controlling fibro.  What they didn't bother to "study" was what BMI's or weights fibro sufferers had BEFORE becoming ill.  I think in many, even maybe most, cases fibro CAUSES obesity.

My fibro really took off after I gave birth to my daughter.  I gained 50 pounds during my  pregnancy.  I wasn't able to exercise due to extreme fatigue that I now know was fibromyalgia.  I lost 25 pounds at the hospital after delivery and haven't lost another pound since (almost 1 year later). Before I got pregnant I was a very healthy weight, exercised every day and ate well.  Now I'm not really able to exercise. Any time I try to (even  low impact walking) I end up being sick for the next two days, laying on the couch and not being able to do much of anything.  It's not due to pain that I can't exercise.  Even the smallest amount of exertion and I feel like I'm going to faint.  I start sweating PROFUSELY followed by chills, I feel very short of breath, I get chest pains, my heart flutters and my muscles burn like I just ran a marathon.  I think if I did actually push myself I would pass out.  I also get a sore throat and my voice gets horse.  It's such a bizarre set of seemingly unrelated symptoms.  Sometimes I can actually understand why some people think it's all in our heads.  It just sounds crazy!

I'm so frustrated.  I don't know how I'm supposed to loose this weight when I can't exercise.  I may end up becoming one of these obese statistics too.  How depressing! 

No Bitching This Time...I Swear

I know my last post was pretty pathetic.  To be honest I felt pretty pathetic.  Still do. 

Anyway, I found out that laying in the sun is almost as therapeutic as a hot bath.  I don't have a bath tub so I've had to rely on hot showers to relieve muscle and joint pain, which really isn't the same.  Yesterday we went for a walk with our daughter in her stroller.  My husband had to pick up his paycheck and I didn't feel well enough to walk the distance.  Since it was a beautiful day I decided to sit down by the water with our daughter.  I laid down on a bench in the sun.  Almost immediately, the pain in my joints started to fade.   It had a similar effect as sitting in a hot bath. I almost fell asleep it was so calming.  I'm lucky that it's sunny most of the time here.  I think even laying on the floor or sitting in a chair at a window in direct sunlight may have a similar, if not as intense, an effect.  I just thought I'd pass that along to other Fibromyalgia sufferers out there.  I don't know about all of you but any small thing that can relieve the pain and discomfort even temporarily is a blessing.  I'll have to experiment to see if it has any lasting effects (I mean in the way of hours or even an hour).

Sick and Tired

I feel horrible today.  I almost feel as bad as I did at the start of this hellish journey.  I've been faithfully taking my meds.  I don't understand why I feel this way.  It even hurts to type.  I'm so discouraged.  We were supposed to take a walk for lunch at one of our favorite restaurants but I wasn't able to.  I felt short of breath and my legs just couldn't move very much.  I'm also having these weird heart flutters again.

Well, I guess that's enough bitching.  I went to an AA  meeting last night and it was really great!  One of my good friends who I hadn't seen in a long time was there too.  There was someone at the meeting who was celebrating 60 days of sobriety.  The topic of discussion was the second step.  I have often had a hard time with since I consider myself agnostic.  She shared her difficulty with finding or believing in a higher power, God.  I then shared the way in which I deal with the second step.  I hope she found it  helpful.

My daughter is desperately trying to grab my laptop and press all the buttons.  For some reason she has a lot of energy this evening.  I wish I had just some of that.

Another Fibro Day

OK - it's back.  About 5:00 today the aching started again. Then I felt the almost irresistible urge to close my eyes.  I laid down and closed my eyes but baby girl was making too much racket with her toys.  I drifted in and out of sleep for about a half hour.  I then, maybe foolishly, took my daughter on a stroll to visit her dad down at the pier.  Getting back up the stairs with her was excruciating.  My knees were killing me. 

I really need to learn that when I start feeling bad I have to rest.  I'm trying to get back in shape but it seems like the day after I exercise I feel weaker instead of stronger.  It's counter-intuitive to be sedentary when I'm trying to recover.  Exercise is supposed to be a good thing - to make you stronger and healthier - not weaker and sicker.

Tomorrow, I think I'll go to an AA meeting.  It's  basically the only social life I have.  How friggin' pathetic.  I'm stuck in this apartment with only the baby day after day.  I feel so trapped. The hotel is so quiet this time of year, the phone hardly ever rings.  I guess I should try to go to sleep since the baby is sleeping.  Maybe I'll feel better tomorrow if I get enough sleep.  I noticed that how much I sleep is directly related to how I feel.

Good Day

Today was great.  I got to leave the island without the baby and meet up with a couple of my friends. We did girl stuff like try on clothes and makeup at the mall.  I was so happy that I was actually feeling well enough to take the boat ride then walk all over the mall.  I did have to excuse myself a couple times to go sit on a bench or something when the fatigue set in, but all in all the Fibro didn't keep me from doing what I wanted today.  It was a real victory.

I always took my health and physical fitness for  granted - never again.  I guess that's one advantage to this illness.  A little humility never hurts anyone.  Getting knocked down a few pegs every once in a while can be just what we arrogant humans need.

 I'm so glad that this particular "flare" lasted only one day.  I'm hoping that I will be able to start exercising again so I can loose this 25 pound baby weight.  It was pretty depressing to go shopping and have nothing fit or look decent.  I used to be thin and in good shape.  I know I'll get there again but I have found that exercise has to be increased very slowly and carefully.  Too much exertion in one day leads to a flare.  It's a very delicate balance.

On an unrelated note, my husband and I made up yesterday.  He apologized and promised to try harder.  That's all I can ask for.

Bad Night

Not long after my last posting, chaos broke out in my household.  My husband and I were bickering as as usual, when the argument escalated to a whole new level.  I was crying of course (my normal reflexive posture).  Our conversation entered the terrifying realm of divorce.  We've both been so unhappy, since I got pregnant really.  I won't go into the boring details but the outcome was him leaving to spend the night on his boat.  Being 37 years old, and divorced once, I've had my share of relationships fail.  But this is the first time there was a vulnerable, precious child. A completely faultless victim. I cried all night thinking, "What have I done?!  I've brought this beautiful child  into the world and already I'm not sure if I can give her a stable, loving family as I had".  There were tears in my husbands eyes (which I have never seen) when he kissed our daughter goodnight and walked out the door.  He said "We have to work this out.  We can't do this to her".

I know the arguing is exacerbating my fibro.  I know that's why I started feeling bad.  I feel completely drained of energy and life.

To Continue From Where I Left Off...

So, my pregnancy was pretty normal until about the 4th month.  Then the overwhelming fatigue set in.  And it REALLY set in.  I barely had enough strength to stand in the shower.  Lifting my hands to wash my hair was excruciatingly difficult - as though I were lifting a ten pound weight or something.  I laid on the couch all day every day falling in and out of sleep.  It kept on this way until I finally decided to see my Dr.  Something was really wrong.  I had to take a cab to the clinic (normally an easy walk) because I was so weak.  My Dr. did all kinds of blood tests and of course everything came back within normal ranges.  My Dr. said "it must be a pregnancy thing".  She told me to make sure to take my vitamins and to get enough protein (I'm a vegetarian). 

Anyway, about 3 weeks after having my daughter, I started to feel the flu symptoms again although this time it was very different.  One evening my whole body began to ache much more severely than it had before.  I started to sweat and I felt sick.  I can't describe the symptoms exactly - just sick.  I felt like I had to lay down or I would pass out.  I felt as though I had a high fever but each time I took my temperature it was normal.  The episode went away after a couple days but returned 6 months later and has never left.

I went back to my Dr. and she did a battery of "exotic" (& expensive) blood tests.  My ANA came back positive so we started exploring the many auto-immune diseases that exist.  More blood tests.  This time my ANA came back negative so my Dr. decided I didn't have an auto-immune disease after all.  All the blood test results came back within normal ranges again.  I was so frustrated because I really wanted to know what was wrong with me.  She put me on high levels of steroids for a couple weeks, which seemed to help, but was not a long-term solution.  My Dr. called a Rheumatologist she knew (I couldn't afford the consult fee at any specialist).  He told her to double the anti-depressants I was already on for depression.  I am now taking 400mg Welbutrin, 200mg Zoloft, 5-10mg Cyclobenzaprine and 2mg Lorazepam every day.  I wasn't back to my normal energy levels by any means but it was really helping for a while (about a month).  Until yesterday I thought I was on the mend.  I guess not.

First Ever Blog Post!

Hello.  As you can see from the title, this is my first blog post so forgive me if I'm not savvy to all the "rules".

I'm "spilling my guts" here is because I want this blog to be as open and honest as possible.  My hope is that others will get some comfort from knowing that someone else out there is going through the same (or similar) thing.  I don't plan on sharing this with anyone close to me (family/friends).  I just want this to be between me and others suffering similarly in life (and everyone else who is interested).

Today I was feeling so bad that I had to vent my frustration somewhere.  It came to me that a blog would be a great way to share my experiences and for others to share theirs.  I was recently diagnosed with Fibromyalgia.  I don't know, but I think this must be one of the most frustrating diseases to have.  So little is known about it and the symptom lists are so long that it seems like anyone could have it.  I can see how it could be very confusing to someone who doesn't suffer with it.  It's confusing to me and I do suffer from it.

Sometime in my early 20s I started having strange episodes.  My body would start aching and I would feel chills alternating with sweats as though I had the flu.  The symptoms were mild however and mysteriously passed in less than a day.  I was always a bit curious as to what caused it but since it didn't really disrupt my life I basically ignored it. 

In June 2009 my husband and I were married.  We did the Vegas "thing".  We got hitched at the famous Little White Chapel.  It was a trip.  About two weeks later I found out that I was pregnant.  I'd never thought of myself as the motherly type, but I do have a lot of love to give and knew that somehow this would be enough.  My family was thrilled!  It would be the first grandchild in our whole family (we're not very prolific).