Dawn Martin Says:
I am taking neurontin 800mg 2x's a day, amitriptyline 50mg at bedtime, indomethacine 50mg 3x's a day and tizanidine 4mg 2x's a day and my doctor just gave me lyrica 75mg 2x's a day. I am a 31 year old stay at home mom who has been diagnosed with RSD/CRPS 3 years ago and recently hurt my back. I would like to know if any red flags should be raised. I am worried for my childrens sake because they could be home with me when or if any bad reactions occur. Any advice?
RSD?CRPS is called Reflex Sympathetic Dystrophy or Complex Regional Pain Syndrome. It is nerve damage that causes my leg to be in constant pain. I can help ease my pain, but it will never go away. I have gone to several doctors and they say that everything that can be done, short of a spinal con stimulator, has been done. So, basically I have been sentenced to life without parole. The weather has a bit to do with how bad the pain is going to be that day. I HATE summer! Or should I say my leg HATES summer. The hotter it is, the worse the pain is. I can only sit in certain chairs/seats that don't touch the back of my leg. Walking is a battle in itself. Let me tell you, it sucks. I can't be on my feet very long or the pain becomes unbearable. Basically, my nerve has pain and it never stops.
Dawn, if that doesn't sound like just one of my symptions of MS I don't know what does. I have had MS for 20 + years (I'm currently 45). I have been trying to deal with major legs pain for most of those years. My nuerologist recently put me on Lyrica and it seems to be working better than anything else I've taken before. i.e. 1200 mg Neurontin a day or 600 mg Carbatrol a day. I've been on Lyrica only a short time but I'm really hopeful. I'll let you know any future reslts.
Debbie, Can you please tell me the other symptoms for MS and why my doctors could have missed the similarities? Does it effect both of your legs or just one? Does weather effect you? Does the amount of time spent on your feet matter? Please tell me more
I have many health problems and every doc. I have come in contact with seems to want to throw pills at me. I am all about taking meds. if they are needed but there is a chance you are being over medicated. I have had a stroke and I was only 28 years old. I was on 5 to 10 meds. from then untill now. I am now 30. It was only 2 months ago that I quit taking everything. Even though I felt like I was ok, I was not. I am not saying you should stop all of your meds. Please, before you start taking a bunch of meds. do your reserch. I have 3 kids and a husband. I almost lost everything over meds. Even when I thought everything was ok my husband left and I had nothing. I got my family back, thank God. But I am not taking a bunch of pills anymore. I hope you read this and I hope it will help you.
I have been on the medication for about two months and I being a married woman my children are grown, I increased the medication at the end and was seeing double, sleeping all the time, confused, depressed. From what I understand the medication inhanses the other medications, I am on Celexa, Diazide, Darvocet the the nerve pain, I was seeing double,and I have allergies and I take sudefed and drink coffee, let me tell you I was out to lunch, I did stop the medication and the side effects went away but the nerve pain came back and is severe. Dawn if you have somebody to help you to watch the children that is great. Dawn the Lyrica did take all my pain away, as well as other pain such as shoulder pain, knee pain. After taking care of patients for 28 years full time plus you do get some aches and pains and it did take it all away. So try it and write in a journal and share that with the doctor. I did start the medication back tonight just a half of a capsule we will see what happens. I also use Lidoderm patechs which help the pain. Write back and let me know. God Bless, Cindy
Dawn I am also on Cymbalta which also may have had something to do with the side effects. Anytime you start a new medication go to PDR on the computer and it will tell you all about the medications. That is what the doctors use. You can also buy it at the pharmacy book stands or order it over the internet. Physican Desk Reference. I am a nurse and one fall took me down for the count for the rest of my life and my husband and I had a auto accident the lady of course hit me on my side. So now the pain is even worse. If I didn't have responsibilities that I have I would stay on the medication Lycrica, I might think twice about the medication and maybe go back on it because it with Cymbalta works wonders. I see that I did spell some words wrong in my first reply sorry about that. That is what the medication does, it makes you forget. Cindy
I can say that in can take months for the narc. and other mind altering drugs to get out of your system. In the mean time all your pain and depression can get worse. Well, it did for me and we all know everyone is different. A good pain med. that is non narc. is ultraset. It is on the border of being a narc. some doc. treat it like it is and some don't. If you look up about narc. meds. they also make depression worse. Yes, taking a few different meds. make one thing worse while making the other better. You should make a list (like I did). Write down what your complaint is before meds. then if the meds. helped and then write down what still bothers you and what the meds. are causing. Take a look at your results. Some things may be worth it and some may not. It wasn't worth it for me. Even if the meds worked for me the side effects were not worth it. My body seems to be very sensitive. It is like I can't take anything. I am so suprised lyrica even works. I don't know where I would be if it didn't. I think the pain would have got the best of me. All of you that have horable pain you know what it does to the body and mind. I thank god I got my mind back. Let me tell you, they were ready to lock me in a padded room and throw away the key. Well, maybe it wasn't that bad but looking back on things it was bad enough. I am writing a book on a lot of this. Of course there is more in my life to talk about but the medical part fills a few chapthers. I don't have time to reread this so I hope I make sence. Ps. Sometimes a doctor wants you to be over medicated so he can have his way with you. Don't think it just happens in the movies. Sorry for being so blunt about it but it happend to me and I guess this is a good start for me to start warning women. thanks for listening
I am happy! to have found a thread about the efficasy of lyrica. for my MS neuropathy (awful burn in feet and legs, paraparesis in legs, gabapentin didn't work too well, but when i finally got it up to 2700mg/day and it was doing its best the S.E. of ruin my esophagus RIGHT AWAY made me have to quit it) i took 500mg/day and it WORKED to return me to a functional state of life. i had titrated it on the original Rx of 300mg/day and so when we went to renew the Rx, medicaid denied if because they had no proof of its being beneficial in dosages over 300mg.
for my appeal (hearing date 9-27 as they did not want me to be able to get well prepared) i am DESPERATE for any and all documentation i can find to the contrary of their mis-informed denial.
email me direct of your own experience with high than 300mg/day if you'd like: proudmutt@copper.net
Dawn, I'm so sorry it's taken so long to reply. In regards to symptoms I have with my MS, let me list a few: Intolerance to heat. Note: that this heat is anything that increases my core body temperature. It can be a low grand fever, a hot shower, or a warm day. Sunny days are worse than overcast days. Pain in both legs with stinging sensations at the bottom of the feet. weakness i n the legs. bladder issues.. Fatigue. All of these syptoms are control with medications. I recently has a flare-up in my symptoms which was stopped with a healthy dose of steroids. Otherwise everything is back to normal or as normal as it ever with be. Recenlt my Lyrica was increased to 200mg/day only because there was just a small remainly amount of pain. It seems ti have worked so far. I hope this helps
I want to thank everyone who posted a reply to my questions! I have to go see the doctor on the 18th of September and I will discuss these options with her. If you want to e-mail me directly for advice,comments or questions you may do so at nervediscussion@aol.com. Again thank you and I hope to hear from you soon!
Dawn, My daughter's friend was in a wheel chair for 6 months with RSD. She got the stimulator and moved away to college with my dtr this fall and is walking about campus! She has been very pleased! Tanya
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