FDA Approves First Drug to Treat Fibromyalgia: Lyrica

24 Comments:

• At Thu Nov 08, 09:35:00 AM 2007,  Anonymous said…

  have had Fibro since a child did not know there was anything wrong muscle joint pain.I am 47 now and the fibro is worst i have been on pain killers for 20 years and have just started taken Lyrisan it seems to help some over all the pain and problems never stop thanks Tony--Knoxville Tennessee.

   

• At Thu Nov 08, 11:46:00 AM 2007,  JC Jones MA RN said…

  Glad that Lyrica is helping with the pain. Please keep us posted and let us know if your problems clear up...JC

   

• At Sun Nov 25, 07:09:00 PM 2007,  Kitty said…

  I started Lycria one month ago. The effects seem to be minimal as to my hopes for more relief, however, it does make a difference. I have been on four pain pills a day, with other meds to relax my anxiety from pain. The chronic illness has pushed my family away, since the doctor treats me like a hypochondriac. The depression is something that is initiated by the lack of true treatment for something more painful than leukemia. I haven't been able to walk my dog for over four years. I have help and am totally disabled. I used to work in medicine and once was had VIP noted on my medical chart. I still dig for answers, as I am beginning to "posture" which is uncontrollable. It is a response to pain that is not being addressed. Why all the tags on medication that is not sufficient? I never believed my life would control me. It has been almost 20 years. Steven-Johnson syndrome tells me more regarding the lifelong pain syndrome. Something poisoned my system. Toxins should be evaluated in all cases of fibromyalgia. Why is this being treated so casually? It should be aggressive, as it is cruel. All blood work shows lupus, MS, Raynaud's, connective tissue disease, collagen vascular diseases. I am breaking apart, yet, there is no pity for proper treatment. This disease is death by exhaustion. You are on the right tract with Lyrica - but it isn't enough to give a life back. Thanks for your efforts. Please hurry..

   

• At Tue Nov 27, 11:31:00 AM 2007,  JC Jones MA RN said…

  Thank you for writing Kitty. Healthline has just published a new article about Fibromyalgia. Check it out at http://www.healthline.com/adamcontent/fibromyalgia-1
  
  Let us know if this information helps you and best of luck dealing with your situation. JC

   

• At Thu Dec 20, 11:42:00 AM 2007,  Anonymous said…

  I have had chronic pain and the doctors say i have nothing. I found this website and everything I read is what I have been feeling, I am 14yrs old. I am so glad i found this site I am going to talk to my doctor about this medicine.

   

• At Thu Dec 20, 05:25:00 PM 2007,  Anonymous said…

  I have now been on Lyrica for over two months. It seemed to not diminish pain, but, at least I could have a thought about an action before worrying about how bad my action would hurtlater. I spend my energy like it is the last dime in my pocket. NOBODY will help cure me. NOBODY will give me a diagnosis - except fibromyalgia. All that means is pain in every fiber of your body. It is like rounding off a bad virus, by calling it a cold. There is a reason for this horrible pain. I have talked to patients who have metastatic bone cancer, their pain is no less than this pain...yet, the doctors get mad when they even see me. My charts are full of everything, including being a drug addict. ALWAYS take someone with you to your doctor visits. It takes every bit of my energy to get myself bathed and ready to go to an appointment. I found in my research that Lyme disease is controlled by the military. What does that mean? Does that mean diseases are being controlled to sell medicine?? The president does owe the FDA 92M for their donation to his last campaign. Taking antihistamines (allergy only) from the dollar store (that's all I can afford now) helps dry up the tender spots. I take two a day - every day. The Lyrica helps with sleep!!! The dosage now needs to be increased, as it levels out in your blood/system and then the doctor should increase my dosage as I am not sleeping again. The side effects scare me to death. I have never seen anything like this in my life...and I gave my life to working in medicine...The AMA is holding back. We need help, as we are too weak to fight. I have had my phone tapped and my internet stopped because I became very outspoken regarding the toxic research I had discovered. I fear repercussion....and I live in America.

   

• At Sun Dec 30, 02:22:00 PM 2007,  Anonymous said…

  I am a 53 year old woman who has suffered from fibromyalgia for more than 20 years now. I have been on all kinds of medicines and nothing gets RID of the pain. lyrica helps but doesn't totally get rid of it. I have been trying to get disability for several years now but, getting a judge to believe you is almost impossible. I keep trying though. People who suffer from fibromyalgia really need help. PLEASE HELP!!

   

• At Thu Jan 03, 02:31:00 PM 2008,  kitty said…

  The volume of patients with fibromyalgia cannot be hidden much longer. Ten years ago there were about 40 people in a group in my city. I started talking to a nice lady who had to give up her life in Houston to live with her city, here in IL. She told me there were over 700 in her group in Houston. I have researched the disease, as it brought me to a slow crawl, after a very active ambitious life. Everything hurts. More people are receiving disability for this disease. It is very similar to Steven-Johnson Syndrome, and frankly it could be Steven-Johnson syndrome. It could be Lyme disease, gone unnoticed; lupus; Raynaud's phenomena, malaria, on, and on, and on. It has all of these symptoms put together. It is the most disabling disease, next to bone cancer, that I can describe. Leukemia in its end stages has these symptoms. You must all write down your symptoms every day for a month. Don't forget to include the sleeping problems; as, not being able to sleep (cachexia) is the final symptome that the body gives up. It is simple exhaustion. After almost 3 months on Lyrica, my tongue swelled up, my mouth filled with sores, and I began vomiting and experiencing diarrhea. I stopped the medicine at once, as the side-effects as shown up front, basically sign your life away...I was so hopeful that it would help. I do feel a little more interested in participating in a simple task - like writing this review. Watch the caffeine!!! Keep your muscles warm and relaxed. Having a medication made just for this disease, acknowledges that it exists!! You will be able to re-apply for disability. Keep going back, or ask for someone to come to your home. The DHS State Dept. is very aware of this disease, and will get help for some of your daily duties. If you can stay working - do so. Staying home is the hardest thing I've ever had to do. Keep family close; make sure they understand it is not "in your mind". I take antihistamines (twice a day), every day. It dries up the sensitive "touch" zones. Feel free to contact me. More help is on the way...kte5@sbcglobal.net

   

• At Fri Jan 04, 11:28:00 AM 2008,  Kitty said…

  Called doctor today to tell him I had switched back to Flexeril, as the Lyrica was creating side effects. He said, "get back on it.". It's scary, as the symtoms were listed above. I fear the depth of danger in the side effects, and after my two day episode, I feel better off of it. I don't know what I will do. Kitty

   

• At Fri Jan 04, 05:17:00 PM 2008,  Hard2handle said…

  To all of you that DO NOT "LOOK" DISABELD... I also have FMS, I was first diagnosed in 1997. I worked up until 2001, when FIBROMYALGIA, took over me and my life. I was a GOV employee, so I filed for disability in 2001, with the Office Of Personnel Management (OPM).
  
  Of course, I was denied the 1st time (you always are). Then after continuious back and forth paper work. Mostly, due to the stress, I lost a patch of hair, lost 35lbs and ended up in the hospital dehyrated because my case-worker lost her job, along with my case...
  
  So, I got an Atty in 2006, my case goes to court, this January 2008. I've had 4 different rheumotologists diagnose me w/FMS, have been going for Pain Mgmt for 5yrs, what more do they want from us?
  
  Do they really this we ENJOY OUR PAIN?
  
  Sincerely,
  
  Frustrated

   

• At Sat Jan 05, 06:14:00 PM 2008,  Anonymous said…

  A very good Internet site for information regarding fibromyalgia and other toxic diseases is called: Toxic Discovery.com. It has many troops and has been fighting Congress for years. Those of you who are not getting any response from doctors or family, will find 1000's of members, and many documents to back up and validate your sickness. God Bless you all...I truly fear speaking out.

   

• At Tue Jan 08, 01:25:00 PM 2008,  Anonymous said…

  Back on Lyrica for three days. Stiff pain has subsided to just pain. It is easier to move about; however, I can tell the difference - it is positive so far. I am on 75 mg twice a day. I will keep you updated, as it is important for the FDA to see how the new medication for this devastating disease works through the body. Thank God Pfizer has seen the huge market for this medication. There needs to be much more pain control. I am still not ambulatory outside the house. I have nursing/home care three afternoons a week, and Red Cross meals five days a week. I have been blessed, even as my family refuses to acknowledge there is a disease like this....go to www.AETV.com - find Brooke's story. We will be getting help. Hang on to hope, Kitty

   

• At Thu Jan 17, 09:31:00 AM 2008,  Anonymous said…

  I have been recently told by my doctor that I have Fibromyalgia. I am only 32 years of age. For the past 4 years I was labeled a drug addict to a liar by all of the medical fields. Not to mention my family thought I was lazy and was pulling their legs. There is no way I could have so much pain on a daily basis. I need to find more info out Fibro that might help me be better mother to my 2 girls. Please email me with ideas!!!! fisherchick75@yahoo.com

   

• At Thu Jan 17, 03:06:00 PM 2008,  Anonymous said…

  had fibro diagnosis over 10 years i find depression to be the worst and tmj syndrome and of course the burning pain in my back and neck airea ireally think this syndrome is some kind of deficiency in the blood or genes iam disabled from the post office for over 10 yrsiam now 61 and suffer like everyone who has it i wouldnt wish it on my worst enemy stillwaiting for acure

   

• At Tue Jan 22, 10:02:00 AM 2008,  Anonymous said…

  The disabilty people are the silliest people I have ever seen. If you have proof you are sick then why do they deny you for?Whether it is fibro or whatever your illneses are then why does it take so long and why do they deny you? Sally

   

• At Wed Jan 23, 09:52:00 AM 2008,  Anonymous said…

  Disability is something that Social Security does not give out unless you do have documented medical records that you have the right to own (just go to your doctors, your hospitals). Make sure you have your labs and xray reports. People on disability are defined in two different categories. Ill or injured for at least a year or more. Any disability with a recouperation time less, must be gotten from the state level or groups like Red Cross for Meals, Catholic Charities, etc. Fibromyalgia is a lifelong disease. It is new. It is not difficult to diagnose now, as there are millions of people in the US joining groups, chat rooms, and flooding doctor's offices. The pain can't keep you away...The fact that there is Lyrica now, for fibromyalgia - attests to the fact that it is real and an entity of itself. You can get information for your social security office from the offices of chiropractors, or from the groups I have mentioned. Once you have all of the information in a packet - you can show the lab results which has a test that proves you have what is being called "chronic inflammatory disease". I am on the Lyrica for the second time, trying to work through the side effects that made me stop taking it before. I keep plain crackers along side of my reclincer and bed at all times. It does help. Not a great deal without pain medication to go along side of it. The strength of the pain medication must be increased as the years go on, and an anti-anxiety or muscle relaxer to keep your body calm. You know the feeling if someone throws a bucket of cold water on you? You tend to make fists and pull up on all of your muscles. You must stay warm and calm. DHS on your state level can come to your home an evaluate your situation. They may be able to provide someone to come to your home as often as they deem necessary to help you. When you use your muscles - they become "inflamed" or irritated as if they were injured. I am very sad to hear of the young people writing to this forum. This used to be a middle aged phenomenon. Now it is showing no boundaries. Good luck, keep going back to your disability office, and go to your doctor at least once a month. He is also resistant to put a diagnosis down that requires the end disability needs from the federal government. I am not a doctor; but, I have fought my way through this disease for ten years.

   

• At Thu Jan 24, 09:50:00 AM 2008,  jc@healthline.com said…

  Dear Anonymous,
  Tips from readers like you who have the diagnosis and have experience, both with using medications and negotiating the disability system, are invaluable. Thanks for sharing! JC

   

• At Thu Jan 24, 12:34:00 PM 2008,  kte5@sbcglobal.net said…

  It's Kitty here. I am back to report on my side effects of the new LYRICA. My hands and right arm are swelling, but have more of an ache that seems constant. The crackers by the bed help a great deal. It keeps my stomach coated so the other side effects, for me, definitely need the TAKE WITH FOOD on the bottle. Also, it is to be taken twice a day. I called the pharmacist - what did that mean?? Twice while I was awake? Sometimes, most times, I can't get to sleep until 4:00 a.m. My panic button no longer goes off, as the local library brings me audio books (15 every two weeks)((FREE)), and when I am laying there with every thought mulling over in my mind like a huge ball of bubble gum that simply won't get smaller, I just push the button on the "book", and play until I eventually fall alseep. So, that throws off my day. I have to get up by 11:00, first because I have a wonderful little (big) dog, that really needs to get out! At noon Red Cross brings my meals, and Mon, Wed, and Fri my assistant from DHS is here for her three hours. My life is a busy one, but, I have been blessed in so many ways, and I have tried to not allow stress in my life. Did you know that was an option? I turn the ringers off on every phone in the house. I don't turn it on, until I am ready, willing, and able to handle what might be at the other end. Just chatting with a good intentioned friend, can cause stress through empathy. Choose your friends carefully. The phone goes off around 9 or 10 p.m. I use this little jewel of a laptop to carry most of my thoughts and words. I was reading something I wrote in this forum, saying I was fighting this fibro for ten years - it has been since 1993. I continued working at a furious speed. I knew something was trying to take me down. I got scared inside, deep inside, as I was raising three sons. They all left the home in great shape and with great pride on my side. With a couple of years my middle son was killed on his motorcycle, and I lost my house of 15 years that I bought CFD and made beautiful. It was the only security I had ever realized. This disease took me down. I am now getting excited. I have the feelings that I am getting ready to "work". I need to work with my mind mostly. I am working up the stamina to travel with the job. I believe I could do much more physically than I could before the LYRICA, and the years of living a stress-free life. Keep in mind, I was getting sick before the great stress at the end of my life. I have been crawling through a family that wrote everything off to me not being able to find my way through the stress of losing my dear son. Believe me, that was a good four or five years. Our tiny family was just that, tiny. I have three sisters who live in a multimillionare environment, not one phone call - except to tell me my mother (whom I hadn't seen in 10 yrs died). I went to honor my mother, and stood with the sisters during the funeral. By the next day, I was swollen up like I gained 10 lbs. Getting there at 9:30, dressed to the nines in my goodwill attire, took me to the cemetery, where mom was buried within three rows, straight back from my son! This was an accident. They didn't realize my son was so close - they would have probably chose a different cemetery. Okay, I am realizing that I have lived in stress all of my life. That is why I took my boys away from alcohol, neglect, abuse, and unrealistic thinking. I was a perfectionist, and an entrepreneur after 17 years at the 800 bed hospital. I was in the "CSI" dept. once the body was brought in. I just did the transcription. Going to work was the best experience each day; always working under "stress" and trying to get the surgical patient's reports back to their charts within 24hours. I thought it important that if they had Cancer or not - it was what they were worrying about. My little report stood between their peace of mind and my fingers. I never left work, before that report went out to the floor!! Anyhoo, we need to stick together. You need to try Lyrica - I promise, I don't work for Pzier or any other med. business. BUT, I am a consultant for business. I want to collect all of your smallest to your largest symptoms. I want to find our common denominators! Do you drink Pepsi or Colas?? Fast food?? Where do you hurt the most, the least? Sleep pattern??? I will pray for you all every single day. I will pray that the people at Pfizer will work as hard as I worked to tweak this medication as they realize, it takes at least four tylenol #4's to make me not feel the pain, so I can write and think clearly....God Bless, Kitty

   

• At Wed Feb 13, 12:27:00 PM 2008,  janet said…

  i started lyrica today. I feel like im losing my mind because i have been to countless doctors and 1 psychologist. Everybody keeps telling me the same thing! I wake up daily hurting. Ive lost my job that i loved, because couldnt keep up with heavy workloads. I have been given naproxen,ultram and dorvacets. Is this pain just my imagination? Ive heard good and bad stuff about lyrica and cant wait till it starts affecting! If this doesnt work, what else, or better yet where can i go so somebody will listen and care!! I feel like im being treated as a mental nut case, or a drug addict!
  36 year old female in Va

   

• At Sun Mar 09, 11:48:00 AM 2008,  Anonymous said…

  I have had chronic pain for over 10 years now. I feel like I have the flu at least 4 days out of the week making it very hard to want to do anything much less go anywhere. I have had at least one doctor who called me a procrastinator due to missing some of my doctor visits. I have never been lazy. I have worked hard all of my life. I'm 47 yrs old and have been on disability since 1994 due to past mental problems. The only mental problems I have now is trying very hard to cope with this chronic pain. My new doctor just laughs and says, well one has to expect pain at your age and does not take into consideration that I've had this pain for a long time. My next visit I'm going to be more bold about it all and see what happens. He is pretty good in getting tests done. According to blood work I'm anemic and nothing else. There's more to it and I will dig until I find a solution somewhere. Oh and due to my past mental problems my pain is pretty much in my head as becoming an older person. Not true and at least I know this.
  Thank you for your time.

   

• At Thu Mar 27, 08:32:00 AM 2008,  Anonymous said…

  I had no idea how many people are suffering from Fibromyalgia. It is surely dishearting.
  What is the difference between
  Neurontin and Lyrica? I just tried that and first it seem that I got aggravated then angry and then anesthisized. I did sleep but still have the tingling in arms legs and my skin seems to be shrivaling or getting thinner. Hair too.Thought I had Lymes but they say no. What is Steven Johnson syndrome? And what is "posture"mentioned in one of the comments? I have had a hard time keeping upright. Struggle to keep shoulders and back and head upright.
  Sorry this is so long but I just stumbled upon this site and it seems to offer help.

   

• At Thu Mar 27, 07:03:00 PM 2008,  Anonymous said…

  Welcome to our newest "anonymous". I am Kitty. I can't tell you the chemistry difference between Neurontin and Lyrica, but I have been on both. I was on the Neurontin 4x/d for about four years. I could not see a bit of change. By this time I was truly suffering, doing exactly what you mentioned about the shoulders, neck, and head. When I started the Lyrica last autumn, I was not completely convinced that it was making a difference, but, a hint was there. I asked my doctor about my side effects, and he upped the dosage to 75 mg. two times a day. It has been about three months at that dosage. I believe it is time to "up" it again because, I am starting to posture. Posturing is, in my understanding, like when you get punched in the arm: the bodies reflexes all pull together a little too late to absorb the punch. It seems with fibromyalgia, the pain is so great all of the time, or in between doses of pain mediation, the body seems to tighten up, making all of the symptoms that much worse. I believe the trick here, is to stay calm. I have audio books, delivered as a special gift by the library to disabled or elderly people. I "read" fifteen books every two weeks, some twice. I can't remember sometimes if I have read it before. The memory, between short term and long term, takes some bad hits with this disease. Pain is a horrible state of existence, and the plain stress of everyday life added to it, makes a stress-free life, almost impossible. I take four anti-anxiety, four Tylenol with codiene, and two 75 mg Lyrica a day. I also take two simple antihistamines to boost my immune system, and help drain water retention from muscle over-use. Lyrica has worked a bit. I am not running from doctor to doctor. It has been a horrible ordeal that made my original primary care doctor walk away after 30 years; nobody else wants to pick up where he left off. This disease is widespread across the country, but Pfizer would know much more about that than me. I very much know that it helps - relaxing the muscles, but it certainly doesn't take the pain away. Why, I wonder do the doctors fight giving the correct amount of medication to maintain the amount of pain? I have about four hours a couple of times a day, when I can talk with visitors and I am not distracted by pain. I can only talk for a short time though, as my air eventually takes on increased CO2, blood pressure, and screaming in my ears. When you are starting to bend over, I suggest you go to your room, and turn on some soothing music if you have nobody to read to you, or calm you down. It helps release the muscles from pulling or contracting quite as much. This medication, nor any of the others, has helped with my sleep. I long for the one medication that will safely give me that relief. The books also help during the middle of the night, so you don't panic. This is a way of life, I am afraid. Until the doctors begin to study and acknowledge its existence. Pfizer is the only pharmaceutical company that has realized the population that needs its scientists to regroup, and make some more changes. I do not work for Pfizer, know anyone at Pfizer, nor have I ever spoken to anyone at Pfizer - I have just put my life on the line and try to report my changing symptoms, so they can assess them, and possibly make positive changes.

   

• At Fri Mar 28, 06:18:00 AM 2008,  Anonymous said…

  Hi There,
  my mom has fibro, for about 3-4 years now. We live in South-Africa, there are a lot of cases like hers, but the doctors here don't know of Lyrica, they say there is nothing to even help relieve the pain, I found this site looking for something and found it, I think. Thank you for all your help, I am printing this and taking it to my doctor. They have told her she has fibro, but now when she gets leg cramps and stuff they say it must be her back or something else, the doctors don't even want to talk about fibro, they know nothing about it.... We need help...If anyone can give me more info or help in any way, please do so.
  
  Minnie
  sjminnie@telkomsa.net
  
  Thank you all...

   

• At Wed Apr 09, 11:59:00 AM 2008,  Anonymous said…

  i just came across this site when i was trying to find out about Lyrica. ithought i was loseing my mind with all this pain being told its not that bad.,i have broken 5 teeth with the muscle spasam and i am in pain now as i am typing; as it;s in my arms now and they feel to be getting worse as the days go by. Igot FM through a fall 4 years ago, i still feel a fool for falling and being left like this.i have tryed most treatments the next one is Lyrica i just hope this is the one that works.

   

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