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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 09-12-2008, 08:02 PM   #1
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tigerlily11 HB User
What can I expect from neurontin?? Newly diagnosed - struggling to stay positive

Hi all,
I have been reading posts and appreciate this board so much !!! You are so supportive of eachother!
I am newly diagnosed. An Ankle injury/surgery in left foot started the alleged RSD. I say "alleged" because I keep hoping that's not what it is!!!! ..But both my ortho and PM docs seem to think it is..I have had two nerve blocks which really didn't help except for a few hours..I also had a bone scan yesterday...Yikes, the thought of being injected with radio active isotopes for the scan was scary....I almost didn't go through with it!

The PM doc wants me to try neurontin for two weeks with the following dosage: (my concern is that she will want to increase it more and more!)
100 mg once a day for three days followed by
100 mg twice a day for three days followed by
100 mg three times a day for 8 days.

From what I've read about it it is a scary medication...urine retention, drowsiness, etc.
I work 8+hours a day and have to have a clear mind.
I also had a meeting with an acupuncturist to see if she could help..she said she has worked with RSD patients before...
When I am at work I am distracted, but RSD is all I think about!!
Often, my toes feel as though they are frost-bitten and my foot feels somewhat wooden at times. It hurts to walk..as I had surgery 6 months ago to reattach ligmanets and remove two pieces of bone that had chipped of the fibula ( and then 2 months later turned my foot!!)

Any advice about neurontin would be appreciated!! Can it help slow down the RSD? Should I ask for more sympathetic nerve blocks? Thanks so much for your help!! All of you are so brave and gracious!

 
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Old 09-13-2008, 11:51 AM   #2
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barbie62 HB User
Re: What can I expect from neurontin?? Newly diagnosed - struggling to stay positive

Hi Tigerlily, welcome to this board. You will find it very helpful with your journey with RSD. I to hope for you that it is still "alleged".
I have taken Neurontin since I was first diagnosed. It is just over 2 years. For me it is a God send. My dose has been increased to the maximum amount that is advisable. I take 3600 mg a day. To my knowledge that is the most that should be taken but I am not a doctor or in the medical field. I would be a whole lot worse if I did not have this medicine.
It does have many side effects. You may get some, all, or none. To be honest, I can't remember which ones I had or have. It did make me sleepy at first. That was not a bad thing since I have problems sleeping. I have not worked since I had the surgery that caused me to get RSD so I have been able to sleep when I could.
To my knowledge the side effects will go away with time. You just have to give it chance. Do give up to quickly. If it works for you it will help with the pain and some of your other symptoms.
I hope this helps, sorry for the long post but I have a tendency to ramble. (side effect of other meds).
Take care and if you have more questions or just need support this is the place to find it.
Barbie

 
Old 09-13-2008, 04:26 PM   #3
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kover2 HB User
Re: What can I expect from neurontin?? Newly diagnosed - struggling to stay positive

Hey Tigerlily, Sorry to hear what you are going through. I was diagnosed 8 years agoand one of the first meds they put me on was neurontin. You have to remember that everyone is different when it comes to meds. When I started on neurontin I gained 40 lbs in the first 2 months. It never helped the problem at all and since then I have run the gammet with all the drugs they can think of. I have very low tolerence for meds though. My doctor and I have finally, after 8 years of trying, settled on a cocktail of percocet,, oxycontin and topamax. I also use Flector patches when it gets really bad.
I had the injections too but they never helped at all.
Give the nuerontin a chance but if it doen't help don't be shy about trying other meds, there are many for this problem. I hope this helps a little and good luck.

 
Old 09-13-2008, 04:59 PM   #4
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jessemom HB User
Re: What can I expect from neurontin?? Newly diagnosed - struggling to stay positive

Hi Tigerlily and welcome

Sorry to hear that you may have RSD. I've been taking Neurontin, 1200 mg per day, for almost 3 years now...same dosage as when I started. My PM suggested that I increase the dosage when I was having a particularly bad time after surgery, but it didn't make a difference. I honestly don't even know if it helps because I've never been off it For me, the only side effect was a little drowsiness and that helped with the insomnia.

Are you having more nerve blocks? When I had a bad flare after hand surgery, it took 5 blocks before the RSD started to calm down and eventually went away (almost).

Staying positive may be hard but it's the best thing you can do right now. Don't hesitate ask your doctors questions and be prepared to have to change meds/dosage. I've been on so many different combo's, I can't remember them all.

I'm curious about the acupuncture. Please let me know how it works for you. My spinal surgeon said I might want to look into it.

Best of luck,
Vicki

 
Old 09-13-2008, 11:33 PM   #5
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RoseinSanDiego HB User
Re: What can I expect from neurontin?? Newly diagnosed - struggling to stay positive

Welcome to the board Tigerlily 11,
I just passed my 1 year of having RSD. I was up to 3600 of neurontin a day but now I'm on Lyrica and Cymbalta instead. Yes, you will probably gain weight, but it helps lessen the RSD pain so give it a try. My Lyrica plays with my head and makes me forgetful. Like other people here say, there's all kinds of stuff to try. I believe the most important thing to have is a good doctor who really knows about RSD. I'm amazed at what I read here on the boards sometimes about the docs not diagnosing and not even being knowledgeable about RSD. When I first got diagnosed, I was truly scared to death but with time, my fear lessened. I've not had any blocks (the thought scares me, plus I wonder about the block possibly making the RSD worse because of the procedure iItself) I've only had meds and I'm working 3 hours each day. I've been doing this job for 9 years and I'm very hopeful to be able to continue to work. Mine is in my feet and ankles after a foot surgery with bad outcome. I don't see a PM doctor either. I see a RSD specialist (he's also a rheumatologist) every 6 weeks now. When I was first diagnosed, it was every 2 weeks or more often if I was hurting. I also take an occasional Vicodin. I do alot of walking (I'm at Middle school) so I can get re-assigned to another job with less walking if necessary.
I'm sorry to hear you have RSD but there's some really great people here and we are here to help you through the good days and the bad days.
Take good care, Deb

 
Old 09-13-2008, 11:37 PM   #6
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tigerlily11 HB User
Re: What can I expect from neurontin?? Newly diagnosed - struggling to stay positive

Hi all,
Thanks so much for all your help with info about your experiences with Neurontin! This board is such a great resource of support ...there is such a range of results and dosages and circumstances...I can see that everyone reacts and responds differently to the Neurontin..If I knew it could halt the RSD I would be on it in a heartbeat!!! I guess we all would..I filled the prescription yesterday and haven't taken it yet..I am frustrating myself with indecision..
It is something I will have to come to terms with.. I have felt some burning and pain in my other leg/foot also
..the good part of my day was a found a sturdy exercise bike at the local thrift store today...it is hurting more to walk...I make it through an 8 hour work day, but that about does my foot/ankle in...I have a job that combines desk work with a lot of up and down and walking to files, copy machine, etc..I'm so glad I found the exercise bike to help the circulation !! I had been looking for some time!! I hope you all have a restful week-end ...
Thanks to all of you for your help and stories.. que sera, sera..

 
Old 09-29-2008, 12:52 PM   #7
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peaches70 HB User
Re: What can I expect from neurontin?? Newly diagnosed - struggling to stay positive

Hi Newly Diagnosed,

I have had RSDS since 1992 but was only diagnosed in 2001. I was on neurontin for a while and had approx. the same doesages as you have been perscribed. For me the neurontin did nothing but make my head "funny".
I was working at the time and my co-workers noticed that my speech was all messed up. Eventually I went off of it and the "funny" symptoms that I was experinecing went away. My cousine was on neurontin after back surgery and she had the same experinece. The neurontin did nothing for my symptoms.
This does not mean you should not take it. Talk with your dr. regarding the side affects. The neurontin may work for you with no or limited side effects.
If there is any other questions you have feel free to ask.

 
Old 09-29-2008, 05:30 PM   #8
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Michelle94 HB User
Re: What can I expect from neurontin?? Newly diagnosed - struggling to stay positive

Welcome Tigerlily,
I've had RSD for 7 yrs. They started me on neurontin at 900mg/day. I stayed on that amount for the past 6 yrs until lately.. I now take 1800mg/day..
I have had no problems with weight gain.. I was never one to have a weight problem though..
At first I was very hesitant to take it.. I worked full time at that time at a drs office.. I felt the same way.. I needed to have a clear mind.. But.. I just got to the point where I couldn't take the pain anymore.. So I woke one night and started it. AT first it made me very tired.. I also started other meds all at the same time.. So with all them put together I was a mess. But after 3 weeks, all the side affects went away.. Now I can't even tell that I take it...
So as you can tell each person is so different.. You need to try it.. For me it helps out so much. I cannot go to bed without that last dose or I will be up through the night...
I wish you the best.. Let us know how your doing on it..
Michelle

 
Old 09-29-2008, 08:47 PM   #9
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kover2 HB User
Re: What can I expect from neurontin?? Newly diagnosed - struggling to stay positive

I was neurontin when I was first diagnosed...I hated it !! I gained 40 pounds in 2 and 1/2 months and it never really helped with the pain. I was never able to get rid of that weight either and having the extra weight is not good for my leg. I am now on Topamax with percocet and oxycontin and that works way better than the neurontin did.

 
Old 09-29-2008, 10:33 PM   #10
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tigerlily11 HB User
Re: What can I expect from neurontin?? Newly diagnosed - struggling to stay positive

Hi everyone,
Thanks again for all your feedback and experiences. This message board is a life saver and the support and information is so comforting. The difference in response to medication is amazing and unpredicatable. I read that the weight gain from Neurontin is from water retention on a cellular level..it's just so strange how the weight gain affects some, and not others. i have filled the prescription but haven't tried it yet..I have curtailed my walking so that I don't hurt as much...I reserve the walking for when I am at work for 8 hours, and also around the house. I did get an exercise bike to compensate and to try to keep my calves pumping. I have to do it gingerly, though, as my hip begins to ache...yikes, what a catch-22 !!!!! This week-end I used the motorized handi-cap cart at the store. At least my ankle/foot/leg didn't hurt as much that night.
I have an acupuncture appointment this Wednesday, and also on Thursday will try a machine called an H-wave unit that will try to get the circulation going in my ankle/foot. Mine is a worker comp injury and they only gave me three sessions of acupuncture. My doctor is appealing the use of the H-wave unit because they denied that . I can see now, where they are beginning to deny treatment and that is very scary. I want to share a book with you (acutally I got the 5 C.D. audio book ) It's called Full Catastrophe Living by Dr. Jon Kabat-Zinn. "Using the Wisdom of Your Body and Mind to Face Stress, Pain and Illness. So far I have listened to one C.D. and it has been very helpful...I will listen to another one tonight. The book is available in paperback.. Thanks again, all !! I wish you a restful night !!

 
Old 09-29-2008, 11:15 PM   #11
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RoseinSanDiego HB User
Re: What can I expect from neurontin?? Newly diagnosed - struggling to stay positive

Hello newly diagnosed,
Please give it a try. Like others have said, we're all very different with how we react to 1 med or another so what works for one, might not work for the other. I was diagnosed in Sep of 07 and began with steroids in very high doses, then neurontin. It increased up to 3600 mg daily at which point I had to change meds because it no longer helped me with my burning feet. I had surgery on my left foot (my plantar plate was ruptured and needed repair) but it had a bad outcome. I wasn't able to do medical malpractice. I'm now on Cymbalta 120 mg daily, and Lyrica 650 mg daily. If I have to walk alot, I can hurt pretty badly so I take an occasional Vicodin. I'm able to continue my job of working 3 hours a day, but holy cow -- Sometimes it's very very hard and sometimes I just want to go onto SSD but I'm really afraid of being denied because many RSD'rs get denied. So, I'm working as long as I can because my husband and I have 2 daughters and we need the $$$$$. We live in Southern California and it's pretty expensive. I'm hopeful that my pain level never worsens. I'm fortunate because I have an RSD doctor who is a rheumatologist but did RSD research for many many years so he's familiar with it. My foot surgery was in late July, then I went up to UCLA in August, and had a few tests, continued having bad pain, then UCLA ordered the 3 phase bone scan and then came the bummer news. It was on a Friday afternoon and they called at 3:30 to tell me I had RSD. Lately, I have really been peeved with my foot surgeon because it's my opinion (and some of my docs opinions) that I wouldn't have RSD if he would have done it properly. I would do anything to get rid of this crappy stuff but it's my reality now. I haven't had good days for the past few, so I guess I'm on the pity pot. Please forgive, but I know someone out there will understand because everyone seems very understanding and stuff --
Gotta run, it's late. I'm hopeful you're able to make a decision about your medication and treatment. We're all here to help you and to listen to you, whatever the issue.
Deb

 
Old 09-30-2008, 09:46 PM   #12
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Re: What can I expect from neurontin?? Newly diagnosed - struggling to stay positive

Hello, I Was Diagnosed With Rsd In My Foot This Past Jan. It Has Been A Night Mare Ever Sinse. Neurotin, Lowertab, Therapy, Nothing Has Helped. I Have Had A Sympathtic Nerve Block And A Epidural As Well And Have Continued To Go Down Hill. In March I Started To Have Tremors, None Of The Drs Would Listen To Me, They All Thought It Was In My Head, I Told Them I Thought The Rsd Was Spreading , They Thought I Was Nuts, Well Finally I Ound A Specialist In My State About 2 1/2 Hrs Away. I Went To Him And Had A Thermography An Ultrsound And A Venus And A Very Thourogh Exam. I Found Out That The Rsd Had Sread To The Entire Right Leg, That I Had Also To Have Ohlebitis In Both Thighs, And That I Also Have Dystonia Witch Was The Cause Of The Tremors. This Also Was The Cause Of My Muscle Twitching And Jumping, Something The Other Dr Could Not Give Me Any Explanation For. To Top It All Off, This Was Caused From An Ankle Injury, I Had Surgerys. And Now I Have Found Out That I Stil Have A Tear A The Fib Talo Wear The Fracture Was Because It Was Never Fixed Whenit Happened They Now Think I Have Ocd. I Am Now Being Seen At The Nih In Bethesda And I Am Also Going To Emory Univercity Monday To See They Neuro And Ortho, Because As You Can See, Here They Have Reuined Me Forever! Now My Day Consists Of Pain, Tremors, Morphine, Flexoril, Clonopin,zonogran And A Lot Of Hope And Prayer That Nothing Else Comes Up.

 
Old 09-30-2008, 10:03 PM   #13
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tigerlily11 HB User
Re: What can I expect from neurontin?? Newly diagnosed - struggling to stay positive

Hi RoseinSanDiego,
I have followed some of your posts and I know that you work in a middle school so I know how much walking you must do! Do you work in a classroom or in several classrooms? Do you have the burning in both feet even though you had your surgery on your left foot? I am so sorry your surgery was not successful...... Surgery is so unpredictable. I regret now having my surgery....two ligaments completely ripped away in my left ankle along with two pieces of bone. The ligaments were reattached and the rest is history!!! Maybe I should have just lived with it the way it was!!! I can't regret my choice, though, but must move ahead with the way reality is now in the present.
I get burning in both feet also. Please don't apologize for expressing yourself about how the last few days have been more challenging for you. It is a constant battle trying to deal with the pain. I am trying to fortify my mind with coping skills and hope that will help me. I hope to start a series of classes for 8 weeks that I described in my previous post based on the book and work of Dr. Jon Kabat-Zinn. It is a combination of meditation and stress reduction, particularly for pain management. In one of your previous posts you mentioned that you could work at the school in another job that doesn't require so much walking...have you considered switching? I hope at some point you are able to get SSD. I must continue to work full time..it is a challenge....I can';t go there in my mind and have to take one day at a time..in fact that is how I am trying to view everything in general and it eases the stress. Take care and I hope you feel better in the next few days...

 
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