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I read the big news about Lyrica being accepted for Fibro. After reading all the side effects , it looks to me that they are what I have already.. I am very weary about medication used for other means. I find safer for me to take low dose of elavil and morphine The side effects for me is only constipation. I was scare at first to take strong medication but it gave me back part of my life. I am on the same dose for 5 years now. I do go down ( dosage)once in a while to keep me on the same level. I am not ready to take drugs for other conditions anti seizure drugs are not that safe.IMHO See: What is Lyrica: http://www.drugs.com/lyrica.html Marie
If you're fine on the medication that you've been on for this long, I see no reason to change. I have also heard of people having pretty bad reactions to Lyrica. I think it's best to stay with what you know works.
I agree with Rufflife. If what you're taking now works for you, don't rock the boat. I certainly don't think Lyrica is right for everyone. I don't plan to take it myself. Like you, I've found a combination that has worked well for me and I plan to stick with it.
I think the big news and the importance of the Lyrica approval is that the FDA is finally taking fibromyalgia seriously. In turn, I think this will eventually influence doctors who are still skeptical about the validity of the illness.
If someone is newly diagnosed or has not yet found anything that helps, then Lyrica may be a good option to try. But you're wise not to abandon a treatment that helps you just to try something new. Thanks for bringing up that important point.
"the importance of the Lyrica approval is that the FDA is finally taking fibromyalgia seriously. In turn, I think this will eventually influence doctors who are still skeptical about the validity of the illness."
I agree this is a big step for fibro. I still don't tell my family and friends that I have "fibro" I was dx by a rheumy 4 years ago but still I don't think I fit the picture because I mostly have pain in the back and hips and now one knee ( old sport accident) that comes to bother me once in a while . After reading a lot on line I don't feel I have fibro even if I have migraines, ostearthritis, hip bursitis...hypo thyroid. I'm a mess but still i am not suffering as these people are. Mine is more chronic pain. That is what my former Gp used to tell me and he did what he could to help me. To save my stomach and kidney I went on opiates after years of trying this and that and having side effects from NSAID's, I wish people would be less critical of those who take it for pain relief. Marie
Marie, I can understand why you don't feel you have fibromyalgia. One of the diagnostic criteria is that you have pain in all four quadrants of your body, and it sounds like most of your pain is only in the bottom half of your body.
I agree with you about people's attitudes about taking opiates. I understand the concerns about addiction, but those who truly have severe chronic pain seldom become addicted. In those cases, the opiates do not give a feeling of being "high." Opiates merely cut the pain enough that they can function somewhat normally.
Ah, the ellusive opiates. I am not sure how much pain a person has to be to get them, but clearly it must involve a great deal of screaming, out loud. I have been using toradol for migraines and let me just say, not fun, not effective and brutal on my already sensative digestive system. But all I was offered (frankly would have prefered codiene, as not so bad on the ol stomach and just as minimally effective). And without being able to take triptans, which are so much more effective, not left with any choice on the matter.
Which is why I rather like the idea of Lyrica. I have been on anti-siezure meds before for migraine prevention: topamax and depokete. And as far as topamax went, in my case, it was effective. I think one for both problems would be excellent, I could use some relief in both areas. However, my neuro is a tad stubborn.. he wants to find out the effects of my botox injections before adding something else. Which is fine, since either way, I might be able to convince him just with the FMS I could use something.
So anyone getting opiates, all the power to you. And where does your doctor live? I sure would like anyones impressions of taking Lyrica or neurotin for migraines and FMS. However, if I had something that worked, I certainly would not mess with it, every time my doc messes with my migraine meds I end up in migraine hell as a result. So if it works, don't mess with it.
I have a TENS unit for my neck pain which I use quite often. I have gone off Gabapentin, tramadol and tizanidine so I can begin a trial of Lyrica. I have peripheral neuropathy, cervical nerve compression in the C5/C6 vertebrae and FMS. I hope that Lyrica as well as trigger point injections in my back will really help me. I hope I can tolerate the side effects, if not then it is back to gaba, something stronger than tramadol and tizanidine (a muscle relaxant). By the way tried elevil it caused me to have severe respiratory stress.
I do hope the Lyrica works well for you. Please let us know how you do on it. I'm anxious to hear more personal stories about people's experiences with Lyrica since it's so new as an "official" medication for fibromyalgia.
I just wanted to add to this post that I take Lyrica now for about 2 1/2 years for periphial neuropathy. Effectiveness is weakining. Also Vicodin for lower back and knees osteoarthritis for about 3 years and effectiveness in fading fast. Just wanted to share that!
Patti cravpa@aol.com
This message has been edited. Last edited by: Stacy,
Patti
Posts: 8 | Location: Reading PA | Registered: 02-03-2007
I took neurontin (3400 mgs.) for about a year until being switched to Lyrica, of which I'm now taking 600 mgs. (150 in am, 150 mid-day, and 300 mgs bed-time). Whether it helps any more or less than neurontin, I have no way of being sure because of changing pain ond other meds. James
Posts: 8 | Location: St. Louis MO | Registered: 07-30-2007
Hello all I was very excited to hear there had been a medication approved for Fibro patients, not that I was going to try it or use it, but becuse of the fact that it forces the medical comunity to see Fibro as a real illness and not one that some peopel and doctors choose to believe that it's a made up illness or one that's all in our heads. I'm hoping that if they are going to produce medications that are actually labeled for Fibro, that those in the medical community will now look into fibro more and decide they may need to educate themselves on the symptoms and treatmens now used to treat us.
My PM doc put me on gabapentin and my primary care took me off of it, after I'd been on it for 30days and had not noticed any improvement when taking it. My Pc felt that I needed something for breakthrough pain and did not want me to be on numerous combinations if we were not sure we could get relief from the others. The bT meds on top of the Sustained release meds for my baseline pain have really helped. I only felt more side effects from the additional of neurontin, and nothing changed with the levels of pain I was in. I'm glad that others have found these types of meds beneficial though. My mom & sister both suffer tremedously with Migrains, I don't think that either one of them have really found much relief with migrain meds though and my mom has been on so many meds for her headaches that I cannot even keep up with her. The one symptom of Fibro that I really don't suffer with, is Migraines, I have more sinus type headaches and have had only a few migraines that I've had to go in to emergency and get a shot to come out of the headache, but thats only about once every couple of years. I use the neil med sinus rinse system & sleep with Breath rite strips to try and control my sinus headaches, it helps quite a bit and I hope it continues to help. Head pain is miserable. Everyone who tell me they get severe migraines I really sympathize with.
I hope the medical world will continue to approve meds and treatments for Fibro and widen the range of suggested medcations usage for us all. It seems like theri is a great deal of contradictory treatment guides out there and so it makes treating us much more difficult and confusing for many doctors.
Betty
Do not be dismayed by toil or suffering, nor by the meager fruit of your labors. Remember that God rewards not according to results, but effort.
Blessed Zefirino Agostini
Posts: 1200 | Location: Home in Washington State | Registered: 11-07-2007
Originally posted by BettyBoopToo: Hello all I was very excited to hear there had been a medication approved for Fibro patients, not that I was going to try it or use it, but becuse of the fact that it forces the medical comunity to see Fibro as a real illness and not one that some peopel and doctors choose to believe that it's a made up illness or one that's all in our heads. I'm hoping that if they are going to produce medications that are actually labeled for Fibro, that those in the medical community will now look into fibro more and decide they may need to educate themselves on the symptoms and treatmens now used to treat us.
My PM doc put me on gabapentin and my primary care took me off of it, after I'd been on it for 30days and had not noticed any improvement when taking it. My Pc felt that I needed something for breakthrough pain and did not want me to be on numerous combinations if we were not sure we could get relief from the others. The bT meds on top of the Sustained release meds for my baseline pain have really helped. I only felt more side effects from the additional of neurontin, and nothing changed with the levels of pain I was in. I'm glad that others have found these types of meds beneficial though. My mom & sister both suffer tremedously with Migrains, I don't think that either one of them have really found much relief with migrain meds though and my mom has been on so many meds for her headaches that I cannot even keep up with her. The one symptom of Fibro that I really don't suffer with, is Migraines, I have more sinus type headaches and have had only a few migraines that I've had to go in to emergency and get a shot to come out of the headache, but thats only about once every couple of years. I use the neil med sinus rinse system & sleep with Breath rite strips to try and control my sinus headaches, it helps quite a bit and I hope it continues to help. Head pain is miserable. Everyone who tell me they get severe migraines I really sympathize with.
I hope the medical world will continue to approve meds and treatments for Fibro and widen the range of suggested medcations usage for us all. It seems like theri is a great deal of contradictory treatment guides out there and so it makes treating us much more difficult and confusing for many doctors.
Hi Betty ! I found out how to add your post to my response, now if only i can remember what i did .. lol .. hope your son is well and y'all are having a great time .. this was sort of a test, but again, thank you for getting this in gear, i am just looking and trying out different things here, I went to email you privately but instead it posted as a reply .. ugh .. lol .. i will figure it out , lol, it is a wonderful time of year and i am and have been in a stable mood , got a "living" Austrian pine tree , so I can plant it , doing my share of being "green" .. lol
My brother, John, is going to be here with me for Christmas .. that is so great .. thought I would be alone .. he had a choice of joining the whole fam in Jersey, but chose to stay with me here .. isn't he sweet ?
When you read my posts , do i sound bitter ? or stupid ? i like feedback , constructive feedback ..
Today, I will make an attempt to go further than the drug store (right up the street) , but it's been in the 20's and you know, I posted it before, really have to prepare these days , lol .. hope we get to talk more and that Mark, Chuck and some of the others will get my laughing out loud events. I figure it is easier to laugh and feel good than to think of my pain as a hinderance .. although I am like y'all, if i don't feel up to it, i rest ... oh well, it will be nice to chat with others , so nice to have people around that understand what we live with on a daily basis ... hope to make more cyber-friends and hope i can offer tips ... as I mentioned , I have a profile here , and one in the MS site .. if y'all want to know a bit more about me you all can look me up .. i like that, so you know who you are posting with .. now i have to figure out when y'all are online and when is the best time to meet y'all ... ttysoon, i hope .. hey, Betty you can email me , if you like and we can discuss someof the questions i have about here .. i will even give you my number so we can actually speak, it may be easier for both of us and you can tell me all about the wonderful job you did getting this forum going .. okay ? Adrian
Betty
1LIFE2LIVE
Posts: 831 | Location: Sunny California | Registered: 11-04-2007
I was just put on it myself. First two weeks, sleepy, very sleey. On from there I am a bit more shaky than normal. But I am getting bad muscle pain with migraines, that is quite unpleasant... so may be working for FMS (too early to tell), but does nor work for migraines.
Okay, I had adverse effects. I was getting positive results for migraines and for pain, but then I got bad swelling in the legs, bruising, limited movement and a great deal of leg pain... which is a rather counterproductive side effect.
I was on Neurontin as a migrain preventative and for Fibro pain and then was switched to Lyrica. I still have a lot of pain. I still seem to really be affected by the weather-rainy days, humid days. I feel like my life revolves the weather! Has anyone actually had any success on Lyrics and has anyone got any tips on stopping the weather from affecting my Fibro so much!!! Grrrrrrr!!
Thanks so much
Fighting against Fibro!
Posts: 2 | Location: Chestnut Hill MA | Registered: 06-27-2008
but still i am not suffering as these people are. Mine is more chronic pain. That is what my former Gp used to tell me and he did what he could to help me. To save my stomach and kidney I went on opiates after years of trying this and that and having side effects from NSAID's, I wish people would be less critical of those who take it for pain relief.
I sure would like anyones impressions of taking Lyrica or neurotin for migraines and FMS. However, if I had something that worked, I certainly would not mess with it, every time my doc messes with my migraine meds I end up in migraine hell as a result. So if it works, don't mess with it.
