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My Journey With Lyrica

 

 


My Journey with Lyrica. A first hand account

At the age of 49 I have suffered with FMS and CMP for more than forty years. Looking back I know now that all the aches, pains and fatigue that kept me from attending parties and dances were due to these diseases.

Over the years I battled with the medical profession just to make them see that my pain was real and not all in my head. I walked out of doctor?s offices on a regular basis when they said I needed to see a psychiatrist because I was depressed.

I suffered night after night, unable to sleep restfully while my family slept the night away. I ground my teeth in my sleep and woke the next morning feeling just as tired as when I went to bed.

The ordeal of grocery shopping, driving home, unloading the car and putting away the food left me drained and in pain, but nobody believed me.

After years of searching I finally found a doctor who not only believed in me, but she was willing to read new research and try new things to help me regain my life. She put me different combinations of drugs to help me regain restorative sleep and the ability to function during the day.

What she did for me was great, I did sleep better and I felt better during the day, but during times of stress or work my pain levels would spiral out of control. After living with the higher levels of pain for about two years I finally asked her what we could do about it. She suggested that I start taking a new drug called Lyrica.

After asking numerous questions to make sure it was compatible with the medication I was currently taking I left the office with seven days worth of samples and a written prescription for refills. Filled with uncertainty mixed with a glimmer of hope I took the pills home and decided to try them the very next day. As this is a new drug touted to help us I decided to share my journey with our subscribers to they could share my experience, for better or worse. This is a journal of my days as I embark on my experiment with Lyrica.
Jane Kohler

Day 1: Good lord what I have done! Another drug that puts me to sleep without taking away the pain. I feel like a zombie. Forty minutes after taking the first pill all I could do was sit and stare. I finally managed to dress myself so I could accompany my husband to the store to get Christmas presents for the kids and I stumbled through the store, forgetting why I was there. I often found myself staring at a shelf for no reason other than it was an excuse to stand still. I came home and vowed to never take another one of those pills as I let my head fall on the desk for a nap.
Evening came and I was finally feeling human again. I announced to my family that I was not going to take one of those pills EVER again, Phewww. My husband and friends convinced me to take another dose and go to bed, give them a chance to work. They promised to support me until my system got used to the drug. I took the second dose and within an hour I had to go to bed and go to sleep.

Day Two: When I woke up on day two I felt pretty good, rested even. I was still stiff and sore with aching jaws from grinding my teeth and my neck felt raw from trying to get comfortable on the pillow all night. The new pills seemed to be of no help. My husband reminded me that I am supposed to be open minded and patient, willing to give new things a chance to work. I took the next dose on day two and within forty minutes I felt my eyelids droop. I felt like a stoner, the world moved slower and all I wanted to do was sit and stare. This lasted for about three hours and the fog slowly lifted, I was more like my old self. I still had pain but at least I was not feeling doped up any more. The rest of the day I was functional and rested with minor pain levels. I took my second dose of the day with my usual night meds, consisting of flexeril and Zoloft and was asleep within an hour.

Day Three: On day three we had a serious discussion about whether I could take a drug that made me feel stoned each day just to relieve the pain. Again, my husband urged me to give my body time to adjust to it. I ate some breakfast and took my dose of Lyrica, prepared to feel awful for hours. Much to my surprise I only felt like I was stoned or drunk for about ninety minutes! Then suddenly the veil lifted from my brain and I was awake and alert, feeling a bit more rested and with a lot less pain. Later that night I found myself less reluctant to take my second dose of the day. I took my Zoloft, Flexeril and Lyrica and went to bed.

Day Four: I didn?t know what to expect on day four. I didn?t want to spend hours a day feeling drugged but this pill did seem to have some potential. I got up and had some breakfast, got the kids ready for their last day of school before the Christmas break and took my pill. As always I got foggy in about twenty minutes, much like a severe head cold that makes you feel like you are under water and far from the world. When the fogginess passed I realized that my neck was not crying out to be separated from the rest of my body. My jaws were not sore from night time grinding and my arms actually felt almost human. In the past when I would awaken I would need hours to relax my jaws, get the pain in my neck under control and get feeling in my arms. I didn?t know what to do our how to handle my morning without the usual pain and routine. I was giddy with the lack of pain. It was a new world for me, a one where I did not have to shove my family away as I clung to a heat pack while I swallowed Advil and tried to move and stretch. I have not had a day like this in twenty years and I am afraid that it will leave as fast as it came. I took my second dose of the day as I went to bed and hoped that the next day would be just as good.
My Journey with Lyrica Pt. 2

Day Five: Feeling confident I sprung out of bed, watched the morning news, ate breakfast and took my morning dose of Lyrica. It is the day before Christmas and I had a lot to do to make the day special for my three Grandkids that I have custody of, my husband and my aged mother. As I began to make a mental list of the food I had to prepare, the gifts I had to wrap etc. I felt myself sinking in the depths of fatigue. For almost two hours I was useless, the pills were kicking my butt. My body felt heavy and my mind just wouldn?t think. All I could do was sit and stare at the painting I was working on and nod my head at the kids when then came running in, excited over Christmas. I figured I had gotten over confident about this new drug and was sorry I took it today. This is an important day for my family and I did not want to ruin it. When the fog finally wore off, about four hours later I set forth to put together our Christmas Eve feast and wrap the gifts.

I am going to take my second dose only because I am going to bed and want to sleep, but I am not sure if I will take one on Christmas morning. I have some breakthrough pain from the extra work in the kitchen and the wrapping of gifts. I feel it in my neck and arms. This drug better make a big difference in my life and pain levels for all the trouble it is causing me at the beginning of this trial. I also noticed that I am overly thirsty, in spurts. At times I am ok and then all of a sudden I can not drink enough water or diet Pepsi to make the thirst go away. Off to bed on Christmas Eve, unsure if I will take the morning dose.

Day Six: It's Christmas morning, I opted to not take my dose as usual so I could play Santa and enjoy the kids joy, plus my Mom is sick and old and I am not sure how many more holidays I will be lucky enough to have her around. This is an odd drug for sure; after the gifts were open and breakfast was eaten I took my morning dose and prepared for a repeat of yesterday. To my surprise the drugged feeling only lasted about thirty minutes and my mind was clear once more.
Now to get a feeling for how this holiday played out I guess you need a description of past holidays to gauge the change. In the past, Christmas would have me in heat packs by noon as a migraine slowly made its way up the back of my neck. My shoulders, neck and arms would get that cement feeling and burn endlessly no matter what I did. I was unable to stay seated for any length of time and socialize instead I had to rise every few minutes to move. By the time my company left in the evening I could barely walk to my desk chair because my hip area hurt and my neck would burn and hurt so bad I wanted to cut it off. I would often time have a bad headache that made me sick to my stomach.
Now to this year, I rose at seven a.m. to three excited kids, an excited husband, older son and mother. It is now ten p.m. and the guests have all left. I was a little disappointed at the pain level in my neck and shoulders; I guess I was hoping for a magic bullet. But in all fairness I did really over do things. I wrapped all night last night, I passed out gifts, baked, shopped, cooked, made snack trays, took coats, refilled coffee and more so I guess this could be called break through pain.
Last year at this time I would have been a puddle fighting back tears. This year my lower body is pain free, my back feels a bit stiff but it is not painful. My shoulders and neck burn and feel very tight and tender. But I do not have my usual headache and pain levels are much less that before. So I guess I will take that as a good thing. My doctor told me not to expect miracles in the first week, she said to give it fourteen to twenty days to really make a difference. All I know is that this is the first Christmas in more years than I can remember that I did not want to curl up in a ball and cry at the end of the day. I have decided to fill the prescription now that the samples are gone and see if this drug can really make a difference. So far I like what is going on, my husband said he has not seen my eyes look bright and happy in years, but the past two days he said they lacked that look of pain and fatigue that he has seen for far too long.

Special Notes:
Due to reader feedback I have decided to do a full discloser on my condition and meds taken etc. It was pointed out that all medications do not work the same for all fm?ers. While this is fact I feel that my journey can help those with FM make a decision about whether the drug can fit into their lifestyle, health routine or mix with their medications. If a person with a stressful full time job can not take time off to try the new drug, at least they will be warned of how drowsy it can truly make you at first.


I have Chronic Myofascial Pain as my main diagnosis.
I am currently taking 75 mgs of Lyrica twice a day.
Fibromyalgia is my over lapping condition as is CFIDS.
I have mild arthritis in my feet.
I have one bulging disc in the cervical area.
I do not deal with many of the conditions a lot of you do, such as degenerative disc disease, diabetes, Lyme disease etc.
I do practice, or receive, stretching, walking, passive stretching, heat therapy, massage therapy and trigger point therapy.
I do not take any narcotic pain relievers at this time.
I am not obese nor am I too thin.
I am forty nine.
My thyroid is ok.
I do not have high or low blood pressure.
I currently take Zoloft and Flexeril in addition to the Lyrica.

Day Seven: I felt better than I expected to the day after Christmas. I actually slept all night without grinding my teeth and I felt stiff and sore when I got out of bed but I did not limp nor wish I could cut my neck off. Feeling good the day after a big holiday was an unexpected surprise. Yes I felt tired and I had some aches and pains, but I felt much better than in years past when I would spend the day after Christmas on the couch with a heat pack. My hips did not ache when I stood up and my lower back did not cry out in pain. Normally after Christmas day I fell into my desk chair like one big puddle of pain. I had level ten pain in my neck and shoulders and I could barely raise my arms to put an ice pack on my head to combat the headache setting in. This year I felt tired and my neck and shoulders were sore, but I stayed at a pain level of about 4 instead of 10, it was a small Christmas miracle. Was the Lyrica responsible or did I just have a random good day? Only time will tell.

I have decided to continue my Lyrica trial and will report back in after I have been on it for a month.
I have noticed one small side effect that I had not bargained for, well I can not say at this time if the pills are responsible or if it was holiday eating. For the past two days I have been burping at an alarming rate, my family just looks at me like I am nuts and then they laugh. If this continues I will have to assume it is the medication.

My Journey with Lyrica Pt. 3

Day Seven: December twenty seventh, a day I wanted to quickly forget. I contracted a flu virus that brought my Lyrica trial to a dead stop. I couldn't keep food down let alone medication. Every muscle in my body was screaming after the violent episodes of vomiting and more. This too shall pass and I will get back to my routine. Can the Lyrica help me fend off the awful pain I feel after straining my ribs, neck and back while throwing up?

Day Eight:The worst is over! The flu bug has left me weak and in pain but I am able to eat some warm soup and crackers as I check my email and help the kids get breakfast. I took my morning dose of Lyrica after I ate and felt so sleepy. I can't say if it is the drug or the flu that has me feeling so wiped out. My money is on the flu. Off to bed for a good nights? sleep, hopefully I can rejoin the human race tomorrow.

Third Week on Lyrica: I am almost afraid to relate how I feel. As of now the burning sensation in my feet is gone. My hands no longer hurt if I bump them onto a hard surface. The feeling of cement muscles in my legs and back have subsided as well. It?s hard to explain but I feel better, the feeling of being under water all day has left and I feel more alert and alive. My lower body is almost completely pain free. I am finding that I am able to shop, drive and socialize more with less pain. The lack of aches, pain and muscle hardness has helped my brain relax and think. I ran into a relative in the drug store and was able to stand and talk to them for twenty minutes, and enjoy it instead of wasting my energy trying to come up with an excuse to get to the car so I could sit down.
I still have a lot of pain in my shoulders and neck, but I have CMP and I think the pain is from that. I also have a bad disc that irritates the area. But I am finding it easier to deal with this issue now that the other symptoms are lessening. I am still on the lowest dose possible of Lyrica but I am so pleased with the results I would consider titrating the dosage upward if needed to maintain the progress I have experienced so far.

Side Effects
So far the side effects have been minor in my case. I had an increase in my thirst level and needed liquid constantly, but that has lessened. I had an increase in belching for some reason, no matter what I ate, or drank I would belch for a half an hour afterwards. That has also subsided, but I still belch for a bit in the morning. I have IBS and worried about the drugs affect on that, but so far nothing has changed and I have not had any adverse reactions in my bowels.

Side Note: I tripped over the dog in the back hall two days ago. I locked the side door and turned to find the big dog right behind me. I fell forward, stopping my fall by landing on the chest freezer. The impact jarred my arms, my neck and back. I almost cried because an impact like this would send me into a two week flare for sure. I went to my studio and sat down, waiting for the pain. It never came! My pinky finger hurt, the one I bent backward but I did not suffer body wide pain from the jolt! Three days later I still did not suffer from the impact of that fall. I really don't know how to live with this lack of pain as I am so used to dealing with the consequences of a fall, but I will sure try to learn.

My Journey with Lyrica. Pt. 4

It is time to wrap up the Lyrica series. I have been on the drug for five, almost six weeks. What I have to report can only be understood by those suffering from FM and it's many ways to cause a flare.

I have to admit that the awful thirst I experienced in the beginning is gone. I am also happy to report that the drug had no impact on my IBS. Every case of IBS is different so if you try Lyrica for yourself keep track of this problem. The awful feeling of being drugged, wanting to go to sleep after each dose also left. I take the pill twice a day now and no longer feel sleepy.

Ah, but what about my pain levels you are asking. I found the drug helped in some odd ways. The pain in my feet and hands, and most of my lower body has lessened so that I don't notice it anymore. As I mentioned before I still have extreme pain in my neck and the top of my shoulders, but I attribute that to a slipped disc and CMP.

What I am about to say next can only be understood by those with FM I am sure. One of the biggest changes I see is how my body reacts after stress. In the past, if the school called me three times a week because one of the kids was in trouble, and the car broke and money was tight, my neck and shoulders would crawl up to my ears and stay there. The stress alone would kick my body into pain mode and it would stay there for a week or more.

Now, my body reacts the same, I go into fight mode and my neck and shoulders pay the price. I am in agony all day after day of stress or over work. The difference however, is that it does not last. A bad day, a scare or stress no longer ruins an entire week. I won't say that the drug stops me from hurting and wanting to cry the day it is all happening but when I wake up the next morning it is like nothing happened. My body feels rested and is mostly pain free.

I know Lyrica is not going to be a magic bullet. I still have to pace myself, eat right and try to exercise, walk etc. But, it has made a major difference in my life and I intend to keep on using the drug until I find a reason not to. I also realize that it is not helping the pain from my Chronic Myofascial Pain Trigger points, but with stretching and massage they don't have such an impact on my life when everything else feels so much better.

As always, please make sure your health care provider makes sure he/she knows what drugs and supplements you are using before you begin taking any new drug. Don't be afraid to stop taking the drug and call your doctor should you experience side effects. Most of all, don't be afraid to ask for new treatments and therapies.

For those without health insurance or those with insurance that does not pay for prescription medications, you can get free or low cost medicatons from pfizer by using the following information.

Contact Information PO Box 66585 St. Louis, MO 63166-6585 1-(800) 707-8990 (phone)

Physician should direct requests to: Pfizer Inc Connection to Care" Patient Assistance Program P.O. Box 66585 St. Louis, MO 63166-6585 1-(800) 707-8990 (phone)

Applicant's total family household income must be at or below 200% of the Federal Poverty Level. Applicant must not have any insurance or receive any benefits that help pay for prescription medicines such as Medicaid, Medicare prescription drug coverage (Medicare Part D), State-sponsored prescription drug assistance programs or other employee, military, retirement or pension program drug coverage. Hardship Exceptions: Lower income patients who have insurance coverage for prescription medicines may still be eligible for assistance through the Pfizer Connection to Care patient assistance program if they are experiencing significant financial or medical hardship. Please contact Connection to Care at 800-707-8990 for more information. To enroll in the program, patients must submit a completed application, a copy of their most recent tax return with supporting financial information and an original prescription from their doctor.

 

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