| 5 years ago :: Jan 07, 2008 - 6:17AM #1 | |
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OK, I've been on Lyrica about 8 days.
I'm so light headed that I'm not even comfortable driving. I just doubled my dose and WOW, I feel like if I veered right I'd go with it untill something stopped me, like a wall or what ever! It feels like my head is in a tin can or something. Before I doubled my dose, I felt light headed but by the end of the week I was starting to feel a little less light headed, but then I doubled my dose and, forget it! I've had to redo my typing to post this a few times... I can't read very well either. I'm going to call my doctor this week, but is the what everyone went through? Thanks, Sun |
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| 5 years ago :: Jan 07, 2008 - 8:41AM #2 | |
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[FONT="Book Antiqua"][COLOR="Navy"]You need to let your Dr know about this. I never had this happen. Not even in the beginning. I am now up to 200mg & still not seeing that problem. The only oroblem I have is the High sugar levels. Let us know what the Dr. says.[/COLOR][/FONT]
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| 5 years ago :: Jan 08, 2008 - 4:19AM #3 | |
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I saw my new rheumatolgist today and as we went over all the meds I have tried over the years, he asked if I had tried Lyrica. I said no but I had heard terrible things about the side effects. He said he did not want to try it yet because my arthritis is out of control and he wants to try a new infusion drug first but he did say that he had many patients on Lyrica who have had no side effects at all. He said we all have such different bodies that you really cant tell who will have problems until you try the med. So bottom line, it seems we have a group that is suffering more than the general public. Not that the info helos, just thought I would tell you what my rheumatologist has expereinced. By the way, I really like him. This was my first visit and I had been seeing my old one for 10 years. The only problem is this new one does not wrte scripts fr narcotics but he has hooked me up with a pain management Dr, and said he totally agrees that I need narcotics he just had decided several years ago to let the specialists that deal with chronic pain day in and out to manage the meds. It is an inconveince but I felt that he woukd tell the pain guy that I need my meds. and luckily, I am not out of meds yet.
Lulu |
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| 5 years ago :: Jan 08, 2008 - 5:12AM #4 | |
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Thanks for the info Jodi.
I called the doctor this afternoon. By the way, I dislike my doctors office!!! I go to the SD county clinic and they have made so many mistakes, I get frustrated dealing with them! They are the doctors that deal with disabled in the area, so I've ended up there. Anyway... I was told that they would probably cut back the dose or discontinue the medication so I figured I'd cut back and see how I do. If I still feel lightheaded, I'll stop the med. I'll see how I do the next few days. It tics me off I'm getting the side effects so strong. Your right LuLu! We each react so differently to the meds! Just like our illness is so individual, so are our symptoms, levels of symptoms, etc. It's wierd though! Since we all have so much in common too!!! Thanks Jodi, it was after reading your response that I was inspired to call my doctor today! It sounds like your getting set up LuLu! The deal with seeing a pain specialist is pretty common these days. I've had the exact same thing happen. It works out OK, at least your able to get your meds! Let us know how it goes! I'm glad you like him! Sun |
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| 5 years ago :: Jan 08, 2008 - 8:22AM #5 | |
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[COLOR="Navy"]Sun,
I am glad that you have been able to get an answer. My feeling is that if it isn't working, why use it? We take too many pills as it is to be taking something that just doesn't work for us. I do wish that this had worked for you though. It works so well for me, even with the side effects, I would not give it up for anything.[/COLOR] |
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| 5 years ago :: Jan 09, 2008 - 1:58PM #6 | |
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Dear Sun,
I had posted a few days ago with symptomes--it was supposed to be a new thread but somehow got stuck up with the new Belief net Sticky post at the top of the threads. I'm repeating it for others who haven't made their mind up yet about Lyrica or could maybe help me. It DOES work--my mobility is better than it has been in a few years, especially on stairs. As for the light-headedness, I've had a few spells of being dizzy, but more of it has been like you are stoned or have just gotten a buzz on from alcohol. Who knew my misspent youth would ever have come in handy? I realized that what I was really feeling was euphoria because I didn't hurt as much for the first time in a long time. Unfortunately, the side effect the company's site mentioned was "tremors"...and not being able to control a hand when it starts doing the exercises for playing trills on the piano is scary; having my head rock from side to side violently--THAT'S scary. My neck is still sore from yesterday. Even grabbing my head with both hands didn't stop it. Which means I can't drive until I figure out what is happening. I can't risk having that happen when I'm behind the wheel. I think if they scale back the dosage I might be okay...and I'd hate to give it up...but it's the first drug I've ever seen that has a warning about becoming a father while taking it! I think it's next week I see my pain doctor--I'll find out today when I pick up my prescriptions. I'm also screwed by not picking them up yesterday, since it means I'll be running very, very close on getting more Duragesic before I run out. I just wish I knew what fresh new hell my body has in store for me at this point. Karen
"You are letting your opinion be colored by facts again."
'When I want your opinion, I'll give it to you." these are both from my father. |
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| 5 years ago :: Jan 10, 2008 - 11:49PM #7 | |
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Hi Midnight Angel,
I'm sorry to hear about your fibro with all the other extra stuff to make your way through. I don't have fibro, but I do have MS. Which has many of the same stuff. I was diagnosed in 2001 and have done the gamut as you have. Your very correct in a sense of humor is a must! If you don't have it then you will find your life a real struggle. I agree with you that you are not a slacker if you don't feel up to doing something. I had to learn that the hard way and so has my family. There are good days and there are bad. I prefer the good days but alas this is real life and life comes at you sometimes hard and on a regular basis. When you have a day, an arm won't work, eyes won't work, or legs won't work, is one of those days. But God provides and sometimes in the most hilarious ways. And sometimes through people that might just suprise you. Glad to meet you and I'm here to encourage you. I'll be checking in. |
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| 5 years ago :: Jan 11, 2008 - 1:09AM #8 | |
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[QUOTE=forgiven46;204863]Hi Midnight Angel,
I'm sorry to hear about your fibro with all the other extra stuff to make your way through. I don't have fibro, but I do have MS. Which has many of the same stuff. I was diagnosed in 2001 and have done the gamut as you have. Your very correct in a sense of humor is a must! If you don't have it then you will find your life a real struggle. I agree with you that you are not a slacker if you don't feel up to doing something. I had to learn that the hard way and so has my family. There are good days and there are bad. I prefer the good days but alas this is real life and life comes at you sometimes hard and on a regular basis. When you have a day, an arm won't work, eyes won't work, or legs won't work, is one of those days. But God provides and sometimes in the most hilarious ways. And sometimes through people that might just suprise you. Glad to meet you and I'm here to encourage you. I'll be checking in.[/QUOTE] To those who are new to this forum, I want to welcome you. I enjoy hearing from others who know what we are going through. I've had a mildly stressful day and was feeling a little down, so I came here for a pick me up. Coming to this forum had been a little happy pill for me, especially since I've been having a rough time the last few years. The last three years have been the worst. I think I've had fibro for about 15 years, but was officially diagnosed with it in 2005. I have a lot of people in my life who don't understand, most of those family members, so it's really refreshing to come here and get encouragement and support. It's midnight where I live and I'm in a lot of back pain and though I'm tired, I know i wouldn't be able to sleep. My fibro fog gets the best of me some days, but I believe someone mentioned having RA. I was told about ten years ago that I had juvenile RA in my feet. I was on the NFA (National Fibromyalgia Association) website earlier this week and noticed that feet were not part of the pressure points, but I have pain and stiffness in my feet every day (esp in the winter). Also, lately I've been having a lot of pain in my left thumb and the part of my hand right below my thumb. Does anyone know if that is also fibro related or could it be that I also have RA? I know I get pain and stiffness in my hands when I write too much and I suppose that could just be carpel tunnel or something, but I was just curious since i don't know much about RA. Before I was diagnosed with Fibro, I went to a pain management doctor who told me I either had MS or Lyme disease. So she sent me to a disease specialist who talked to me for about five minutes then poked on me in the pressure points in the back, chest, knees, and arms and told me I had fibro instead and sent me to the Rhume that "officially" diagnosed me with fibro. I don't know much about RA or MS, so I was wondering if those who are afflicted with the disorders if you could give me some info. Thanks! -Zan |
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| 5 years ago :: Jan 11, 2008 - 10:15AM #9 | |
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Zan,
Most of the other diseases you mentioned have markers that show up in the blood. The Dr. should have done specfic blood tests to rule out RA and Lyme disease. Not that that makes a definite diagnosis but it helps to rule in and out diseases. It took them months of blood tests just to get into the ballpark on what types of arthritis I have. The reason it is imoportant is that tells them what drugs to start trying. Altho I have known I have arthritis for many years, every time a new med comes out that attacks the disease from another direction, ie. T cells vs B cells or TNF factors, I haul myself in to see if my body wants that drug. It is a hassle but I hold out the hope that the perfect drug will be developed that willmake it possible for me to get up and run again. Lulu |
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| 5 years ago :: Jan 11, 2008 - 10:41PM #10 | |
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Dear midnight angel,
Nice to meet you! Last year at Christmas my niece and future nephew gave Mother and Grandma an electric jar opener. I hadn't even thought of looking for something like that, but they both love them, especially Grandma...as I keep mentioning, she'll turn 100 next month. Her skin is so thin now that fighting a jar open would be very hard for her. But she's still at home--she has her "catapult chair" and one of the wheeled walkers that has a seat and a basket to carry things in. I agree that humor is a must with all of these physical problems...and you never know who will turn out to be a fan of some of your own favorites. When my husband and I were getting fitted for new glasses, Sam laughed out loud when I picked up on a reference to a Monty Python skit, and said most people don't know the reference. I know that my body is winding up for a new pitch, although I think I have enough diseases,syndromes, symptoms, etc. and I'd hate to be greedy by taking on any more problems. As long as everything keeps working, I know just how blessed I am. I have a husband who is sticking by me when my participation in keeping up the house is minimumal--it took me 2 days just to change my own bed! I did all the pillows yesterday and did the sheets today, fighting the memory foam topper back into the right position. I have a queen-size bed with only one side open for manuevering, so it takes a bit. Phil used to do it for me, but it hurts his back too much for me to let him do it if I can possibly stand to get to it myself. I have trouble talking sometimes becausse most of my meds list dry mouth as a symptom--sometimes even my tongue is completely dry and I can't swallow unless I either get a drink or chew some biotene gum. It brings the moisture back, but it certainly isn't a taste treat. I still had fun with it--I was doing a survey that asked what flavor gum I chewed most often--and i answered "yucky mint gum". From then on, all the normal questions about where you bought it, how often--all refered to it as "yucky mint gum". I laughed through the rest of the survey, just at the sheer absurdity of it. What else can we do? Years ago when my son told me he thought I was going crazy, I told him there was no travel time involved. Over the years, I've had to give up or have had things taken away because of all of my physical problems, but the one thing I refuse to give up is my sense of humor. When I was taking Phil's Mom for her radation treatments this past summer, there was one man we'd be waiting with whose spirit amazed me. He'd had his jaw broken in two places, they'd replaced his tongue with a piece of his arm, and the chunk of his arm with one from his leg. He couldn't wear his dentures, either--but he was still smiling, and had taught himself how to speak understandably. I mean, you had to listen a bit harder, but so what? He was SO pleased when someone talked to him, or showed him they understood what he's said. I never got his name though--I think it was Kevin. He was doing chemo as well. When they tattooed Mom to be able to know exactly where to check from then on, I teased her about being the last person I'd ever expected to get a tattoo. He cracked up and showed us his...but in the 7 weeks of her treatment, he'd gone from 150 pounds to just 100. I told him if he lost 10 more he could be a fashion model--and he started really laughing hard over that. I still wonder what happeded to him and say a prayer; one day his daughter and grandson were with him, and the next day I told him I could see where he was getting his motivation from. You see people every day for weeks on end, and then that's that. it's over. But at least I got him to laugh, and told him I admired the hard work he'd done to be able to speak at all with no teeth--he DESERVED praise; he'd earned it. Now I think of him on a bad day and realize just how worse off I could be. I wish him and all of Mom's fellow traveler's well--just as I wish it for all of mine here. Karen
"You are letting your opinion be colored by facts again."
'When I want your opinion, I'll give it to you." these are both from my father. |
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