Wednesday, November 25, 2015

Life Changes...

I thought I would touch base and write a blog post about what is going on in my life recently!  I am sorry it has take so long but my life tends to be rather the same day to day and I don't have much to report. 

One thing I do have to report is a fibromyalgia research study being done on a new drug and that I am participating in the study. The company is IPS Research located in OKC, OK but there are branches all over the states where they are conducting different types of research.   I have gone to the clinic for 3 weeks now and was issued the drugs just yesterday.  I have taken only taken 3 doses so far and since it is a double blind study I have no idea what I am taking.  I don't think I will notice any changes or anything for at least 2-3 weeks if I am taking the drug instead of the placebo.

Why did I decide to do this study?  A friend knows what I have been going through with the fibromyalgia and chronic fatigue and she saw an ad saying they needed people to participate in the study and thought of me.  When I contacted the clinic they were so nice and so professional I though what the heck did I have to lose.  Those of you who have followed me know that over the past year I have just about quit all the medications I have been on for years because I didn't think they were working for me...If you take a drug to help with pain and it doesn't work why take it. 

I was on two fibro drugs and I still hurt so bad and was so depressed that it didn't make sense to me to continue taking the Savella and Lyrica.  Good drugs but they are expensive and they just didn't do what I was led to believe they would do...they work for some but not at all for me.  I also was on Requip for my leg spasms for over 5 years and still had spasms even with upping the dose etc and the only thing I noticed was an increase in my obsessive compulsiveness!  I was also on an antidepressant called Effexor because of my depression issues and all I can say is it is a nasty drug!  I weaned off the Savella, Lyrica, and Requip over a 3 week period and had no problems but the Effexor just didn't want to let me go.  It took several months and several lowering of the dosage to finally quit it.  My cost each month taking these drugs was just over $200...Like I said why take the stuff it doesn't work?

I have had pain for so long it has become part of my lifestyle...little pain in the upper back and shoulders today...think I will vacuum or mop the kitchen floor.  No problems standing I do dusting and cooking.  Laundry really seems to bother me no matter what day it is.  I am sure a lot of you reading understand my motives and methods.  The gist of it is you do what you can with what you have.  Hard part is learning to live with pain and the loss of who and what you were before the pain and problems came.  I have an awesome doctor and when he told me that my old life was gone forever because of the fibro and chronic fatigue I cried...still do.  I developed an attitude over the past 6 months that consists of living with what I have been dealt and working with what I have got.  So old girl the time has come to drop your old live and build a new one.  I wasn't ready to let it go but it is gone and I am rebuilding a different life. 

The only constant in this life is the pain and tiredness I experience every day!  I am hoping that trialing this drug it might help others that are like me.  I know that in this type of study I stand a good chance of not getting a drug at all but just a placebo/sugar pill.  The way it is broken down is
  • 25% will get a Placebo
  • 25% will get 75 mg Lyrica
  • 25% with get 15% of the experimental drug 
  • 25% will get 30 mg of the drug.  
My attitude is it is all for research and I am willing to help if the drug turns out to be a life saver for other people.  If I happen to get Lyrica or the Placebo nothing will happen.  If I get the drug maybe it will work for me...who knows!  Wish me luck