Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 06-26-2009, 09:54 AM #1
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Default What helps me and question for those on Neurontin

First of all, intro.. I am a 34-year-old mother of 5, and I have had RSD in my ankle and leg and my lower spine for almost 4 years now. Got it after surgery for an injury sustained in an accident with a drunk driver. I take Neurontin, Cymbalta, Ultram, and Hydrocodone, and have tried Lyrica but did not do well on it.

Talking to others who understand is the best medicine of all, so thank you. That being said, I have found some natural supplements that really do help out.

I take 1000 mg of Eveneing Primrose oil 3 times a day. I wasn't sure that it made any differrence, but a week after I ran out, the area in my spine flared up so badly that I couldn't bend over, and it was VERY hard to walk. About a week after going back on, things got significantly better. For some reason, it doesn't do that much for the ankle which is the original site of the RSD, but it does help a lot with movement in my back.

The meds I'm on keep me awake at night, so I take 6 mg of Melatonin about 30 minutes before bedtime. It's the hormone your body produces to induce sleep, so it's natural, and non-habit -forming. It REALLY helps me sleep and it's available almost anywhere. My favorite is 1mg sublingual tablets because they work fast and you can adjust how much you take easily.

Now, the question... My Neurontin makes a huge difference in my sensitivity and burning, so I really need to stay on it. However, I have gained 10 lbs, and really feel sad about my weight. It may not seem like much, but I have never had weight problems before, and I REALLY want to lose what I have gained and not gain any more. I eat right, excersise when the pain allows, and stay active. Any tips on how to drop the weight without going off the medicine??

Thanks so much for your help. Wishing everyone a pain-free weekend
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Old 06-26-2009, 12:12 PM #2
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I am taking 2400 mg of Neurontin per day. It took time to build up to this amt of Neurontin in my system. However, where you have gained 10 lbs., I have gained between 70-80 lbs. I had been very active before the RSD injury. I was 47 1/2 when I was injured(now 50). The makeup of Neurontin, as well as Lyrica, provides pain relief as well as a by-product of weight gain.

You are in your 30s, and your metabolism is faster than a 50 yr. old woman, so that is a positive for you. I applaud you for raising 5 children, in itself. The added medical issue of RSD, with your duties as a Mom to 5 children, is a difficult mix.

You have my admiration for being able to balance a difficult situation. Life goes on, we do what needs to be done. That 10 lbs. gained from the medication does not diminish your value as a woman, or a Mom.

Have you developed high blood pressure with RSD? I did, be it the RSD and/or the medications and lack of previous activity, and/or the weightgain.

I prefer to have less burning pain, so I will stay on Neurontin until something better comes along.
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WC Injury 03/24/07;Two Right Knee Surgeries on 5/22/07 and 01/16/08. Surgeons and Physical Therapists ignored my concerns of burning pain, swelling, and no improvement and getting worse. Diagnosed RSD/CRPS I/Sympathetically Mediated Pain Syndrome/Chronic Pain on 06/2008 by family doc;on 08/2008 and 12/2008 diagnosis confirmed by two WC PM Doctors: Both legs;hips; hands; and spine effected by this culprit. SSDI granted 01/2009.
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Old 06-26-2009, 01:17 PM #3
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Thank you, Dew. I appreciate the support. I'm glad the Neurontin helps you too. I know I should be grateful that I have a med that helps, and not worry about the weight, but it's hard. My kiddos are little (2,4,6,8,and 10), so I don't want to get too heavy to play with them and participate in all the family activities that we enjoy (those that are still possible of course).

I haven't seen a big jump in my blood pressure, but my blood sugar has been low more since I started all these meds. Hope your doctor can help you straighten that out so it doesn't cause you any permanent damage to your heart. Thanks again for the reply. take care.

AM
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Old 06-26-2009, 02:17 PM #4
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Hi and Welcome amb97,
Neurotin works well for a lot of us, but the weight gain is definetly a negative.
I'm like Dew, my weight gain was 60 lbs. over a 5-6 year period. Neurotin worked well for me, it was the only thing that stopped completely my electric jolts, jerk, spasms throughout my body every day and at night. They were violent going thru my brain and raising my head off the pillow in a dead sleep. I was on 3200 mg. I decided to go off it, and so my Dr. had me go off very gradually. Lost 30 lbs. in 6 months. Am now on my 2nd 30 lbs. BUT, two days ago started getting the jerks, spasms back. I don't want to go back on, but my health is more important. So, I will tell my Dr. and go from there. He is very qualified,, so I trust him. I'm also on Cymbalta, Hydrocodone, 2 blood pressure pills, sleeping pill, anti=anxiety med, I also know that weight gain is damaging to our health, and I feel so much better with half the weight lost. Have been able to drop one of the blood pressure meds. I was triple dose on one and double dose on the other. Now am on double dose of both. Dr. feels when the rest of the weight comes off, I can drop at least one of the meds. I, like you and Dew, had been very active before RSD.
As with a lot of meds, there are positives and negatives. Could you increase your exercise. With 5 children, it must be a struggle to work in exercise. Could you buy a used walker? I have an eliptical and plan on getting into a schedule of a few minutes a day. I also swim, which is easy on the body.
Thank you for your information on primrose oil and the sleep aid. Hope you have a low pain day. Again, welcome, we are happy to have you join in. Take care, loretta
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Old 06-26-2009, 02:49 PM #5
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Hi and welcome to NT.
I have been on Neurontin for 7 years. I have gained 70 pounds. I swim at the Y 2 sometimes 3 days a week. I hate the weight gain. However, without the neurontin I am miserable. I stopped cymbalta and lost a few pounds.
Take care,
Sherrie
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Old 06-26-2009, 04:04 PM #6
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The best strategy I think is to eliminate sweets and carbs. It has been responsible for my weight loss.
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Old 06-26-2009, 04:16 PM #7
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been on neurontin for a year now, and take it for nerve pain due to neurological problems... (possible MS) anyhow, could not take the tingling pain anymore after dealing with it for years and years....

I have gained some weight but maybe 5-8 lbs, with the meds...(I gained a bit lately but it is my eating not the meds) I think just keep yourself as active as you said, playing with the kids is the best fun way to keep active... around the RSD... hugss and good luck

from another mom of five kids, ages 16,14,9, 4 and 2. fun fun, work full time too hugsss,sarah
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Old 06-27-2009, 09:43 AM #8
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Thanks so much to all of you. I appreciate all the suggestions. I have added another set to my Pilates (it is very gentle, so not too bad on my pain), and tried to start walkng again. It has been 100 or above almost all month, so gotta go when it's cool. i have lost a couple of pounds already. might just be water, but every little bit helps .

Always nice to meet another mom who has as many kids as I do. Makes me feel like I'm not the only one crazy enough to do it-lol.

Best wishes to all.
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