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Hello All, I wanted to tell you guys about the My Fibro Study medication. I did qualify. You have to be healthy and willing to give up your current meds. You have to go a week without anything at all. I was willing to try it because nothing really helps my pain. I have been in pain for several years. I have tried changing the way I eat. I went to a "pain management clinic" they combined exercise, chiropractic, that shock relax thing whatever it is called. They gave me many different muscle relaxers and various pain medication. I tried yoga. My pain threshold is so much higher than it was before. I also am very resistant to pain medication, nothing really helps me and NOTHING allows me to sleep. I lost my health insurance so I was taking an obscene amount of tylenol and advil (enough to up my potassium level) and otc sleep meds I took 15 or 17 at a time. (please don't try this!) It did not really work. I still hurt. I still did not really sleep and it made me tired all of the time. My husband and I run a business and do homeschool with our children. Well, really, my husband did all of that. I mean I do design the albums and do all of the after work on the photographs this is at the computer. So I spent all my out of bed time working. I have a smile I do when I am in excruciating pain, during a wedding no one knows. Most of our friends did not really know, my kids thought I was mad all of the time. I think somewhere inside my husband's heart he thought I was lazy. If he knew what I went through to just do what I do.... The first thing they do is decide if you are healthy. Then, if you have nothing else wrong with you, they want the findings to be only the medication. That is why you cannot take any thing else. Also, the pain has to be widespread and equal top and bottom. This medication is unlike anything I have ever taken. They detox your body so you have to go without your meds. NOTHING. This was very difficult. After the detox time, Then starts week one. Week one you report your pain three times a day not taking anything. I remember that Sunday, I had went to church and I really just cried the whole time everyone was singing. I think that was the first time any of our friends found out that I hurt, before I just was busy all of the time. The first night of the medication was brutal! You take it in two doses. The second one you take and 2.5 hours later you take the second dose. If you do it FOLLOW THE INSTRUCTIONS they are not kidding. The medication hurt. I felt like my whole body vibrated, like when you hold on to a lawnmower too long. I thought maybe I was allergic. I had to go to the bathroom but my legs felt like I had an epidural and my husband helped me. I really could walk I just thought I couldn't. And unlike everyone said I DID NOT fall asleep. Most people fall asleep with in 5 minutes, unfortunately I did not. Then, the second dose. Oh My Gosh! It was like just before you get put under when they tell you to count to ten. The TV was on and the words the people were saying were muffled. I thought I could not breathe but then I thought breathe in, breathe out. It happened I was breathing. Then I realized how thirsty I was and I tried to reach for a drink, the movement was delayed. I woke up so nauseas. But with NO pain. I have not had a no pain day in several years. It was such a relief. I think it was a blessing that I NO pain because I would NOT have taken the medicine again if that had not happened because it was horrible. It took about a week and half for my body to get used to it. I actually look forward to taking it now and it usually does not hurt. I have been on it for 8 weeks and now I would pay any amount of money for it! I average 5 no pain days and 2 days a week that I still hurt. NEVER to the degree I did. I get to play with my children. I still don't fall asleep after the first dose. In fact I do walk around on the first dose (don't try this until you are used to the medication) I do it because as a mommy life is still happening when I need to take that dose. My husband is really the one in control then but we do story and bath time and I am there. The second dose puts right to sleep, understand you cannot stay awake and it happens so fast that it will scare you at first. and I sleep 6 hours. Which is phenomenal for me. The way the study works is, after 12 weeks if you still want to take the medication you can sign up for taking it for 40 more weeks, that really gives you a year. If you get the placebo. If you could tuff it out with just tylenol for the 12 weeks (probably impossible, right) the 40 weeks no body gets the placebo. It would be worth it. I have my life back, and I am not on a medication that alters my brain. I think more clearly, I am beginning to remember things again. Today is a down day and I am hurting, but it is so much less pain than it used to be. I haven't taken tylenol yet but when I do, it will really help. (unlike before) If you try the study. I know it is really horrible at first. Stick it out because if enough people do not stick it out it will take longer for them to finish the study and then we won't be able to get the prescription for fibromyalgia. Also, stick it out because it is definitely life altering! For those of you that did not qualify for the study. I hope they finish the study soon, so that you can try it. I hope they keep trying new things so that if there are more than one defense against this horrible life stealer. I love you all. Melissa  |
You will be helping "thousands" of people with Fibromyalgia if this drug goes to market. For me right now, Lyrica is my salvation, well, & along with my Avinza (morph) of course!!
