BB2693

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Looking Back...

Friday, March 27, 2009

Every now and then I get thinking back to when I first started having --- what? Fibromyalgia? Fibrositis? I suppose so, but it wasn't this then. Pain always and weird stuff. Hyper mobile joints...

I had severe PMS - so much so that after three weeks into cyclic tracking they called me with an appointment to see the Endocrinologist because my symptoms were so severe I was considered suicidal by their criteria. I was 35 - 36 maybe. Had been going to my GP for ages with no result... I was the one who clued in - because I was looking at my sign in book for work one day and started to see the pattern in my sick time - flu EVERY MONTH around the same time??? I also got a little hernia before my periods about the size of a pecan and dreadful fibrocystic breasts that swelled and hurt even when I walked!

He finally sent my to my Gynecologist who had just received info on a seminar on PMS - which was a new concept at that time and called the Dr. who was giving the seminar while I was sitting in his office with tears running down my cheeks because he had said - "there is nothing we can can do..." He didn't get him that day, but got me into the program.

You track and journal everything for 6 months I think it was, then wait until you can get an appointment... so he said I was looking at at least 9 months until I heard from them... which at that time seemed like forever to me.

I read a book on PMS that my GP's nurse loaned me. It had a list of symptoms in it and I could check them all off - had 'em all.

Of course they made the appointment when I was in the PMS stage. My husband went with me because they considered it a couples problem... he had to live with it too - live with a pit bull in lipstick - you know. The Dr. started asking questions which I would answer but then say to DH, Is that right? Some of the questions he had to answer cause I was deep in the FOG...

I felt like I was looking in on life, on what was happening around me - but not a part of it. The Dr. could see something pretty was severe going on. After the physical exam he talked to us again and said he only had one other patient presenting with symptoms like mine. He felt it was hormonal - she had had a total hysterectomy and was much better. So he said "We can take care of that "here" ( 3 hours from home - where I went to post secondary school) "or you can have it done at home..." so I came home and was in and had surgery within a month - they found endometriosis as well.

I woke up in recovery thinking "I'M ALIVE, AND I AM GOING TO GET ON WITH MY LIFE! I started a new job before my 6 weeks check up... and I was great for oh - I dunno - maybe 2 years --- but it wasn't REALLY just PMS it was JUST Fibro... only nobody knew... then my GP examines me one day because my back and shoulders were so sore and says you have Fibrositis...

Wonderful what's that? No Info. No Internet... carry on - suffer on... just round and round it went... so looking back... its better now than it was then... even if it isn't great now. There are so many things associated with the syndrome, too often doctors treat the individual symptom instead of the whole...

In 2003 - I started feeling strange - not the fibro strange - and saw a local Rheumatologist - he wouldn't listen to me - just FIBROMYALGIA - dismissed me with 6 pages of exercises... First I was just so discouraged because I had waited a year to see him and it was two days before Christmas... then I got mad. I made an appointment to go to a Diagnostic Clinic in the city and went for four days in January.

I went through a bunch of tests there and was seen by a Rheumatologist who detected a heart murmur and sent me for an echocardiogram. Later he said it was the loudest heart murmur he had ever heard. I had a stage 4 mitral valve prolapse. More blood was going the wrong way than the right way - thus the reason I could not go up a flight of stairs without getting short of breath and having to stop half way up. Also why I was literally dragging myself from the bed to the couch and back again. I didn't have the energy to do anything. AND IF I HAD UNDERTAKEN TO DO THE SIX PAGES OF EXERCISES the rheumatologist here had given me, I would not be here writing this now.

I had open heart surgery in 2004. They repaired the valve with a band - very interesting procedure. All right there on the internet. I was really glad they were able to repair the valve so I don't have to take Coumadin and it doesn't have to be replaced every 10 years.

I was in the Cardiac ICU right after I woke up and got the nurse to sit me up so I could e-mail home! LOL It seems outrageous now, but at the time it made sense. She was draped across my bed shaking her head saying "You just had open heart surgery and you are sitting up e-mailing". It was a first for her. It was like - no not like - I was given a chance at LIFE again...

I had an episode a couple of months later and had some problems after that but I seem good now. They thought I might have had a small clot or heart attack or air in my system from being on heart lung bypass but they really didn't know. It was all quite the experience. We had hoped that with better blood supply to my body - the fibro might not be so bad, but it didn't work out that way...

NOW I DON'T want anyone to go into a panic or anything... however - one thing that a lot of Doctors don't realize is, that mitral valve prolapse is common in fibromyalgia and up to 75% of us have it - though not a stage 4 prolapse. It is also found in people with hyper mobile joints. Most people do have some regurgitation. One article I read said it is because of the type of tissue in the valve. There are quite a few sites that come up if you do a search for Mitral Valve Prolapse and Fibromyalgia.

Anyway, as I looked back over the years I see a lot of things that are symptoms of fibromyalgia and hyper mobile joint syndrome. Even myopia or nearsightedness! Flat feet - my rheumatologist suggested orthotics when he looked at my feet on my last appointment. Oh yea, and all the allergies... none to foods then, they came later. I also used to dislocate my knees quite often and my thumbs lock and I have to pop them back into joint. My wrists are so loose, I can't carry a heavy pot to the table without the contents of it nearly spilling on the floor before I get it there. They often get very painful and I need to wear wrist supports...

Recently I did a search on Hyper Mobile Joint Syndrome and a book called:

"It's Not Just Growing Pains By Thomas J. A. Lehman"

I can recall so many visits to my family doctor when I was a child and being told that my pains were growing pains. In Phys Ed I could never do what the other kids could do. Couldn't hit the baseball, couldn’t throw the basketball, couldn't run, couldn't hit the volley ball... you get the picture... Couldn't do push ups cause my elbows turned inside out... In High School in gym there were so many things I could not do because my elbows bend funny... I always hated my knees to show because they look weird - they bend backwards. I was always turning my ankles...

So... looking back it all adds up. Hurting all over, not wanting to get up to go to school in the morning because I was sore and exhausted and quite often nauseated. I not able to comprehend math and left brain tasks but was great with the right brain stuff... being creative, loving crafts, knitting, painting... and reading - all more as I got older. Just skimmed though school because nothing made sense to my mind and I was bored and daydreamed a lot...

Oh yeah! When I was 6 I had meningitis with a temperature of 104.5. I wonder what that added to the mix.

I wanted so badly to learn to play the guitar but the notes made no sense to my brain. Like math made no sense to me either.

Then after high school I went into Nursing Assistant Training and graduated in 1971 in the top of my class. NO ONE was more shocked than I was - BUT it all made sense to me. We were R.N.A.s then but now we are called Registered Practical Nurses. I loved nursing but of course all the lifting and walking etc etc was too much for hyper mobile joints and fibromyalgia... I worked for 3 years on a surgical unit, left for a few years after having surgery for a stricture in my right ureter. Worked in a Book Store for awhile then went back to the hospital for 5 years on a Chronic/Geriatric Unit - I loved working with the seniors. Then I left to have surgery (the hysterectomy) and went to work at a Retirement Residence before I had even had my six weel check up....

When may daughter was three weeks old my elbows were so painful I couldn't even lift her. I also had never felt better in my life than when I was pregnant because of the hormone changes perhaps.

Oddly enough - now it all makes sense. Back then of course, it didn't. When I look at the symptoms there I am - Hyper Mobile Joint Syndrome and Fibromyalgia together... osteopenia, osteoarthritis, Mitral Valve Prolapse, knees that dislocate - my pelvis used to tilt up and lock under my hip bones... low back pain, shoulder pain and rotator cuff problems... could go one but will stop all nasty...lots of other "good" things that I can't even think of at the moment...

It has all been very cyclic - I would get better and be good for a couple of years then crash really hard. Then I would get better and be able to work again - but not without frequent illnesses and upper respiratory and allergic reactions. I also had many badder infections and am on an antibiotic at all times so I will not get an infection. I have always had frequency and also some IBS.

Then there is the pain... just start at the top of my head and work all the way down and there is hurting everywhere... this is a very unrelenting condition... I don't really understand why they call this a nonprogressive disease - because over the years I have beomce worse...

There is one thing that is good in all of this. All of these things have names. They are not figments of my imagination. They are real syndromes. The pain is real and with help or good doctors, an understanding family and a good support system... I'm gonna be ok...

I also found SparkPeople on here and a wonderful support network that helps to lift my spirits and keep me on track...

THANK YOU SPARKPEOPLE!

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