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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


[QUOTE=sorepaw]The reason I got off my Zoloft is because it stopped working for me. Instead of taking away the Depression it only made me more depressed so I decided to quit taking it. I had taken Neurontin in the past for about a year for my pain, but after talking to several people who had taken it I found out that you can only take it for couple years before your body began shutting down from the dosage. So since the doctors had no clue what to do for me I discovered that eating a healthy diet (as in whole-grain, lowfat, no or little white flour, no or very little junk food) and taking g*lyconutrients(the post tried to delete this word so skip over the *) such as Ambrotose AO made by M*annatech. improved my symptoms considerably and I live in almost no pain. In my experience I've tried several different combinations of vitamins but nothing has seemed to work except for the g*lyconutrients. I have found out that a great deal of autoimmune disorders such as RSD can be treated much better by good nutrition than by any number of medications. The doctors convinced me that I had to do exercises constantly all day long which only made my situation worse and aggravated my RSD. My body heals instantly when my mental problems are not bothering me. The only problem is that I have been diagnosed with clinical depression, manic depression, and obsessive-compulsive disorder which gets in the way of my recovery. The best way I've found to fight these problems is to give up control to God and let him fight my battles for me. It's just been really difficult with all these mental disorders, withdrawing from Neurontin last year and Zoloft and this year which has only compounded my mental problems. I'm currently seeing a psychiatrist for my mental problems, and lowering my dosage gradually only made my situation worse so I had to quit cold turkey in and it wasn't as bad. Your body can only take so much medication for a certain amount of time before it starts to do more harm than good. Unless it's a life or death situation I'm not going to take medication for extended periods of time again. Since the RSD is over my entire body I'm guessing that the weather affects my mind also since it has probably spread to the region.[/QUOTE]

It's great that you're able to help control your RSD with only the aid of diet and **************. I've been on neurontin for 3 years and it's not shutting my body down. I have been hearing wonderful things about a new med like neurontin (but w/o all of the horrible side effects) called lyrica. I asked my doc (or rather, my doc's PA since she's the one who does my monthly meds) about it yesterday and I'm currently weaning off the neurontin and starting the lyrica slowly. I've always heard that if you take a medicine for a long period of time your body will become accustomed to it so oftentimes you have to keep increasing the dosage or switch to a similar medicine for a while to get the same effect, but rarely that "Your body can only take so much medication for a certain amount of time before it starts to do more harm than good". Certain medicines yes, you shouldn't take for extended periods and the manufactorers will tell you so, but not all meds are like that thank heavens. I'm sorry that the topomax made you worse. Maybe you should try a different med that could give you better results. Your mental well being is very important and if you are having trouble coping with your conditions w/o taking anything for them, it might be worth seriously looking into a safe, long-term oral med alternative to topomax. There are several out there. My son is bipolar, suffers from depression with suicidal tendencies, and has had periods where he self-mutilates. He has been on meds since he was 4. We do regular bloodwork on him to check his kidney and liver functions as well as other levels and he's doing well. If he had not been on these long-term medications these past several years he might not be alive today.

Those docs that told you to exercise so much were crazy and know nothing about RSD. I'm glad you didn't listen to them. Gentle exercise/PT can be very beneficial to help prevent muscle atrophy and to keep your limbs moving, but not exercise that causes more pain. No pain no gain is a saying that has no place with someone who has RSD. Neither does ice or cold packs. RUN, don't walk from anyone who tells you different.
Good luck Sorepaw, I'll be keeping you in my prayers.
Cathy





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