Journal

Well, it's been a few weeks since I have journaled about the Xyrem, so I thought I would update everyone:

I have been on the Xyrem since the middle of August and people around me tell me that they see a big difference in my energy and personality (all for the better....LOL).  I  do feel better, but I was hoping for faster results.  I do tend to be an impatient individual so I suppose I should work on that <grin>.   I do still have periods of time where I don't want to be around anyone else or talko anyone because I feel "foul".   That usually happens going into the late evening and is gone by the next morning and is usually just me......not anything anyone has done.  Grrrrrrr.......so frustrating.   I have gone 3 weeks without an appt. at the clinic.  I do have to go back sometime next week, but it has been nice not having to drive there every week since it is on the other side of town.  After this part of the study is over, I will roll right into the next study and then the doctor can "fiddle" with the dosages to get it right for me.  Right now, I am on a set amount......either 4.5 mg, 6 mg or none, so I'll be glad that he can prescribe it specific to me.   I think then I may be able to go beyong the 5-6 hours of sleep.........maybe I'll get to 7 or 8 hours.  I can only hope :)   I will encourage anyone out there to seek out these medical studies if you feel compelled.  Noone wants to be a guinea pig, but in order for us to be able to go forward in a cure or at least a helping hand with fibro, someone has to do it.   We not only help ourselves but we help those in our fibro community, now and in the future. 

Everyone have a great evening.  I will try to journal again soon.

Much love and appreciation to each and every one of you!!!!

Bobbi

Well I went for my weekly check-up on Wednesday and got my weekly supply of the Xyrem.  The nurse told me that the last 3 patients recieved the placebo and backed out of the study.  I really can't say that I blame them since we can't take anything for the pain except for tylenol (whatever......ugh) and then they were getting no active ingredient to help them.  The nurse also slipped and told me I was getting 4.5 mg per dose which is the lowest dose of the active ingredient I could get.   But she said that very soon the dosage would increase.  I think she meant that the new medicine would increase (to 6 mg per dose) cause it acted much differently that night when I took it.  I still am not sleeping more hours, just more restful.......except for last night.  I have been taking it and going to sleep around 11 and back up at 2 or 3 in the morning.  I took it last night and didn't wake up till 7 this morning.  That's the first time I have had more than 4-6 hours sleep in a row and I feel pretty good this morning.  I have alot of stiffness but it usually wears off in a few hours after I'm up.   I have a busy day ahead of me.....and the last time (2 weeks ago) I made plans for a day out of the house I had a flare and was sick for over a week and lost 2 days of work.   I'm not sure which is worse......my Mother's wrath or a week of being sick.  I'll take my chances and hope I don't get a flare over going to a pic-nic today. 

I also want to say how much I appreciate everyone on this board.  It has been such a blessing to know that I can come here, read your stories, laugh and learn.   

Hugs to everyone :)

Bobbi

Okay.....I feel like crap today.  I woke up this morning, thought I felt pretty good and had the bright idea of going to Wal-mart with my husband to do the grocery shopping.  What the hell was I thinking???  By the time I had walked 1/2 way across the store, I thought I was gonna break out in tears.  My back and legs were aching.  Now that I am home, my IBS has kicked in, so now I have this horrible stomach ache, and all my muscles are screaming. 

 Also I will update on the Xyrem.  I have been on it since Wednesday and I am sleeping more soundly at night.  However, taking the medicine is hard to swallow (pun intended).  It is horrid.  Surely the pharmacutical company can make this into a pill form!!!  I am waiting on the extra sleep (i should say, more restfull sleep) to help with the muscle pain.   It does feel better, but I was hoping that a simple grocery store run would end with better results.   Guess I should just be more patient.......ugh. 

Other than that, I am just mentally preparing myself for another week of work.   What i wouldn't give to work from home so that I could make my own schedule.  I am definitely working towards that goal.

Here's hoping less pain for everyone!!!!!

Bobbi