Fibromyalgia is My "Thing" #3 (Loyalty)

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   Pixienotposted 14 years ago

   It's helpful for me, at least, to know how my life stacked up before I was diagnosed with Fibromyalgia. I want to share so you might see yourself, or siblings or anyone you know with this disease on a parallel level.
   
   I was in a car accident when I was 17, and I was not driving. (Just an aside)
   
   When I and a multitude of others were wondering what in the world was wrong with me I had one security, my mom was understanding and she knew that I was telling the truth about my pain. I could not move my legs without pain for almost six weeks. I never lied. 
   
   I started feeling better and my parents got me a blue bicycle for my birthday.  I was so excited.  In a way it resembled freedom for me.  On the day after first riding it my legs hurt a lot.  So Mom did the only thing she could do. She grounded me from riding my bicycle because she thought it was either hurting me, or I was being dramatic to gain her attention. She was so sure I would instantly get better. I knew it was a punishment, from my "loyal" Mom.
   
   I was wrong...absolutely, completely and unerringly wrong. WOW!  If your own mother doesn't believe you, you are in deep trouble.  I mean deep.  There were only two of us for a long time and my brother had been ill with rheumatic fever when he was only 13.  Mother was NOT having another sick child.  She had to work quite hard and very odd hours in order to feed and clothe us.  So, back to the doc to get some new pills.
   
   Back to la la land.
    
   That's about the time (at age 17) she (my mother) took me to a doctor to tell him I had a nervous stomach and needed calming down so my imaginary pain would finally subside.
   
   She was a very strong and convincing woman. I know she had my best interest at heart as well as her own.  She could not fix me so she decided that I was just a nervous child. So began my addiction to tranqulizers. 
   
   Happy Pills, so said my mother.  As long as I took them regularly, on time, I was the happiest person around, giggles and all. Everything was funny! I was labled "Depressed." 
   
   I rue the day I no longer could take my happy pills.  Mom read a lot of medical articles and books and discovered that I should change brands of "nerve pills" every three to four months. 
   
   I was basically a very shy student.  No social circle ( I was the kid that had the A's but no money behind me) My popularity was in doing other kids homework.  And I did... never ever asking for payment of any kind.  I just wanted my peers to like me. I basked in the written word, so I had a lot of essay work to do daily. 
   
   One time my English teacher called me up to her desk after class and (I promise this is true) said "You know, you would be getting the A+ if you did your own work first!"  I was mortified, but she got her point across.
   
   Back in the day you had the same English teacher for 4 years of high school.  So she knew my work quite well. I took every English and Literature class I could.  She'd have to have known for years. I wanted to die.  I did not know what to say except, "Yes Ma'am." 
   
   From then on I became less popular because I would no longer do any one else's homework, except my brother's of course.  I did his English and he did my math!  Perfect formula for success for each of us.  And neither of us ever lied.
   
   Except for Algebra.  I took Algebra I for two years.  I didn't need to I simply wanted to understand the principles of the formulas.  At the end of the second year my teacher said he would pass me if I promised to never take his class again. (note: I am much better at math now)
   
   My only girl friend lived down the street from me.  Her name was Lucy and to this day I wonder if she was a spawn of the devil (Lucifer).
   
   She taught me to shave my legs, which had no hair on them, hence I bled a lot and dear sweet mother had a fit. Lucy lied to me and my mom, and suddenly we were on a double date.  Her date - her future husband; my date, Bill - a quite inebriated pure bred Indian.
   
   I moved in with my Great Aunt and Great Uncle. Bill lived in Arizona.  He called me for two weeks in the early a.m. (3:00 am)
   He kept telling me he did not have much, but he loved me and wanted me to come live with him.  I told him "no" in every polite way I knew.
   
   My Pappy Jack, as my Great Uncle was known, called me to his bedside (he was dying of cancer) and asked me what was going on.  I told him and he instructed me not to answer the phone at night again.  I heard it ring that night, but never again.  I don't have a clue what Pappy Jack told Bill, but I was truly grateful. He never called back.
   
   All this time, while living with my aunt & uncle, I spent what time I was not working or reading, in bed.  Oh my it was a wonderful bed.  You climb in and sink to the middle and pile the comforters on. Warm and isolated.  I loved that bed.
   
   My dear Great Aunt cried at my wedding.  No joke. She cried loud enough for others to look her way.  She thought I was lazy and my poor husband was going to be miserable because I was a slob. I wasn't, I was in a great deal of pain.
   
   Wedding plans were really hard.  We had to do it on our own. 
   
   My main point in this whole little peak into a very small time in my life is that no one is loyal to you and your pain unless you find a way to educate them.
   
   That does not mean you are not loved.  It means you are unique and your disease is still fairly new. So next time we will start on educating those we love.  (And maybe, just maybe, I'll tell you a little more of my story.)
   
   May Blessings, Joy and Smiles fill your days.
   
   Happy Holidays to all!
   
   Pixienot

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      soulsearchingposted 14 years agoin reply to this

      When  my sister was first diagnosed with MS many people didnt believe her but now we know  the truth.  Dont worry what others think.  Be true to yourself and know you are loved by many.. eventually they will come to accept the truth , your truth.   Accept feeling depressed once in awhile because I think we all do.   How can you not feel down about the craziness in our world?  If you are feeling down it just means that you are an intelligent human being that doesnt think things are the way they should be and they are not.    I find that helping others or doing something nice for someone is a great way to make you feel good about yourself.    Be true and loyal to yourself   Eventually your confidence will intrigue others.

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      Baileybearposted 14 years agoin reply to this

      gosh, that's practically a hub.  I had a pain disorder for many years, which the doctors called fibromyalgia, even though inflammation markers in my blood were raised.  After many years of health problems, finally, I worked out that I had food sensitivities, including to gluten & dairy.  It's great to not have painful bones, joints, muscles & skin 24/7.  I've written about some of this stuff in my hubs

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      Brenda Durhamposted 14 years agoin reply to this

      I'm sorry to hear you have to go through this.   I know some people who have fibromyalgia and it's difficult for some people to understand their pain because, from what I hear, it's harder to diagnose than some other illnesses but yet is just as hard to live with and treat.

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      Lady Blah Blahposted 14 years agoin reply to this

      Wow...you wrote a very touching story, very well written.  I can relate, because at around 34-35, I started suffering from an auto-immune disease as well, just as my second daughter was born.  I wasted the first year with a bad rheumatologist who just kept x-raying what I told him hurt.  I was fortunate to have a great husband, because no one else can understand pain when there's nothing they can see.  I had joint inflammation absolutely everywhere...couldn't turn my neck even when I was at my worst.  No one could understand how I could show up for work one day fine and be limping by lunch time, but that's what happened.  My diagnosis was Mixed Connective Tissue Disease, which is a sister condition to Fibromyalgia.  Internet research was all gloom and doom, but I found a great doctor at MUSC.  I've seen one hub out here with some false information on the medicine that I take, but it's kept my condition under control for over 12 years now with no side effects, so I'm grateful.  I searched for every cause, every natural cure there was.  And maybe this isn't very "politically correct", but in the end, I prayed, and I prayed hard...not for a cure, because I knew there wasn't one.  I prayed that I could control my condition, take care of my infant and my toddler and that I could continue to be productive and work...and that's exactly what I received when  I was led to my doctor.  I can't even imagine having gone through that as a child and not getting the care you need.  True, fibromyalgia (and my condition) are not things people understand or recognize, but that doesn't make it any easier for the sufferer.  I wish you the best. I've considered an article on my story too, but just haven't been able to do tell it yet properly.

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         Pixienotposted 14 years agoin reply to this

         Dear Lady Blah Blah, I have to tell you that your name brings a deep smile to me. (deep is when it almost becomes a laugh from sheer joy.)
         
         I feel your pain and your sadness that you experienced.  Don't know what the medicine is, but I am so glad you have it and it works.
         
         I recall when all five of mine were rather young that I crawled around on my floor because I could not walk.  That was how I accomplished anything at all when the older kids were in school, and had a baby at home. Hopefully, I will never go through that again.
         
         You hit the nail on the head, politically correct or  no, prayer is the one tool that does not fail.  Leading you to a doctor that can help, that is answered prayer in itself.
         
         My wish and hope is for you and all with these hard to diagnose and treat illnesses to stay strong and never give up or in to depression.  There are a multitude of us out here.  If we ban together the energy alone will help to sustain us.
         
         Miles of smiles coming your way.

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   leereeposted 14 years ago

   Pixienot:
   
   I went through a very similar situation.  I was a chubby kid so every ache and pain was blamed on me being "fat".  I went through many humiliating examinations by doctors who would tell my mother I needed to diet.
   
   Finally having been diagnosed with a rare genetic disorder instead of the Fibromyalgia the doctors thought I had.
   It was discovered when my 16 year old son started developing the same symptoms.  I'm now looking for a new doctor that will treat me.  I think it's going to be an long, hard battle from here. 
   
   I admire you openness and jovial attitude in you post.  Thanks for sharing, it make as difference when you know there are others out there going through the same thing.
   
   Best Wishes
   Leeree

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      Baileybearposted 14 years agoin reply to this

      an autoimmune condition?  An autoimmune condition was responsible for my pain disorder, which is now in remission with the treatment - diet that excludes the offending items

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   JeffreyBrownposted 14 years ago

   Hello Pixienot,
   
   I also have the terrible illness Fibromyalgia,I was much luckier then you and it did not hit me until my mid 30's.Oddly I never really had anyone I could consider my friend either,the people I once thought to be friends only were users much like your friends wishing you to do their homework.Being a guy no one believed the pain I live with each day,since you don't look sick they don't take you serious.I had Fibro way before I was diagnosed,in 1994 it was not well known and the small town country doctors did not have a clue what was  wrong with me or if there was even anything wrong with me,anyway I was on my own since I had no support from family or friends.I lost my home and property,had to sell almost all my belongings and even lost my wife because I could not work eventually.I have 3 sons who just the last few years really see I do have something real and not just a cop out to not work like my ex brainwashed into their heads.Well just want you to know your not alone,check my hub anytime or just  write to me if you need someone to vent too.
   
   Thank You

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   duffsmomposted 14 years ago

   I have fibromyalgia.  At first I was more annoyed than anything, a few aches and pains when I had done nothing to deserve them.  Now a few years later--HOLY CR@P--this is painful.  I feel like a raw open wound most day and often worse than that.  I also have a weight problem and as you said in our original post, everyone wants to blame that. 
   
   One day my face hurt, really hurt for no reason--that is not from weight but the fibro.  Now I work with two gals who both have fibro and thankfully they totally get it.  The hardest part for me is that I think people tend to think that we are exaggerating the pain.  I am going thru a phase right now where I can barely walk, my feet, legs, hips hurt so much.
   
   It is good to know you are not alone.

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      Pixienotposted 14 years agoin reply to this

      Dear Jeffrey I am so sorry for what you have had to endure. We should form an online support group to help one another out. Hubpages is sort of like a support group.  At least it has been to me.
      
      Once your sons understand you will find a total (or almost total) change of attitude.  It is so difficult for children of divorce to get the whole picture. Be patient.
      
      Duffsmom,  I can relate to your pain.  If you want to write me personally (pixienot@sbcglobal.net) you can and I would be happy to discuss our mutual problems with you.
      
      There is help out there.  Get to a YMCA if you can and get into the warm water.  Even if you cannot exercise yet, as the water moves it is massaging your muscles (which is what they really need.
      
      Both of you need to remember 1) Fibromyalgia will NEVER kill you and 2) it will get better with a little help.  and 3) Keep a positive attitude, especially when the pain is horrid.  Hard, but  possible.
      
      Thank you so much for writing me.

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         Pixienotposted 14 years agoin reply to this

         Dear soulsearching, thank you so much for the encouragement.  You are so right, what is true for us IS our truth. And we must understand to never compare our situation with another.  We are each so very different.
         Thank you for your comment.
         
         Baileybear, did you think my hub fell short?  You said it was practically a hub.  I am open to all constructive criticism.  What do you think I should do to improve?  All input is appreciated.
         
         Leeree, how awful for you.  On the other hand, how wonderful to finally know what is wrong and that it will not kill you.  You and your son can work together to come up with a plan for each of you.  Always encourage one another.  That is so very important.  Don't judge, encourage.
         
         Thank you for your comments.
         
         To all, I want say I am sorry I have not replied before now.  I do not know how I missed your comments.  Please accept my most humble apologies.  Your taking time to comment means the world to me. It has helped me so much since I have been on hubpages. 
         
         So, thank you to all of you!  I do  appreciate more than words can say your input. I hope I have not offended anyone.

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            Baileybearposted 14 years agoin reply to this

            I see you actually have this as a hub and a thread.  I was saying it's great as a hub. 
            
            Have you been tested for celiac disease?  That was the root of my pain disorder. That and non-anaphylactic dairy allergy.  These cause tissue inflammation & pain.
            
            Did you get a blood test to see if had raised inflammation markers?  If raised, i'd suspect inflammation from foods/medicines etc.  NSAIDs trigger pain for me, not relieve it.
            
            Foods that generate or contain histamines also cause muscle tension for me, which can result in easy muscle strains.

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               Pixienotposted 14 years agoin reply to this

               Baileybear, how my hub got on here I do not know.  I probably hit the wrong button somewhere.  It's still good advice, IMHO .
               
               I have not had the tests you mention, and will look into it.  However, I am positive my problem is indeed Fibromyalgia.  I also have Myofascial Pain Syndrome and Chronic Fatigue.
               
               I will discuss these tests with my doctor.  Thank you for the heads up.
               
               Thank you for the comments.

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                  Baileybearposted 14 years agoin reply to this

                  yes, I had mycofascial pain and chronic fatigue too.  I am now able to work part-time.  Usually need an afternoon nap, but I am no longer brain-dead, in chronic pain and chronically exhausted.
                  
                  I reakon fibro is the name doctors use when they can't figure out what's wrong with you.
                  
                  My thyroid was packing up on me with autoimmune disorder - that reversed when addressed the celiac with gluten-free diet

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                     Pixienotposted 14 years agoin reply to this

                     I am so happy that you no longer have chronic fatigue or myofascial pain syndrome. I like to say mine is in remission.  It still pops up now and then.
                     
                     I believe that the longer you have these diseases, the more you learn how to deal with them.  Diet (the foods you consume or do not consume) is a very important part of healing.
                     
                     I have wonderful times, and then I have the times when I fall and they all kick in.  Maybe this is someone's way of slowing me down.   
                     
                     I have heard of gluten-free and I have thought about trying it.  I am sure once I do I will find a great relief, especially in the yeast connection.
                     
                     It has been good chatting with you.  I wish you well in all you do and I wish you good health!

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                        Baileybearposted 14 years agoin reply to this

                        I think the food connection is worth investigating.  Even if you find something that turns the pain volume down by avoiding it.  A lot of celiacs get bone pain etc and left untreated, they go on to develop other autoimmune conditions & allergies.  I've written some hubs about unravelling my health issues & food issues.  I haven't yet written a hub specifically about pain yet

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   saltposted 14 years ago

   green tipped muscles, spinach and bowen therapy. Dont go to one of those near medical therapists, find a really good alternative bowen therapist and you will be amazed.

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   lorlie6posted 14 years ago

   Hi Pixienot-I'm really impressed with your honesty and writing-glad to have you here on HubPages.  I decided to chime in regarding fibromyalgia since I was struggling with 'strange' pain for years before diagnosed with severe degenerative joint arthritis in 2009.  I won't leave a link, but wrote my first Hub here on hip replacement surgery not long afterward.  I know you're certain of the veracity of your diagnosis, but I was pretty sure my pain was either MS or fibromyalgia before I found out the truth for me.
   Take good care and I hope you take a look at my Hub.

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