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CESSG Questions & Answers

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Have you or a loved one been diagnosed with CES?

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CESSG Questions & Answers
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CES has been my “friend” since 1/1/1994

I’m so happy to find a place where people will understand. My cauda equina syndrome was due to a gunshot wound. I’m not sure how long I was paralyzed for but it had to be at least an hour. I remember when it all started coming back alive ... it was excruciating, so bad I told the paramedic put me to sleep ( they thought I meant like a dog to kill me that’s not what I meant LOL ). Cauda equina has caused me to need to Catheterize and have a colostomy. For years I thought narcotics did nothing for The stabbing, burning, fire ants under my skin pain. Whoa was I wrong! I found way different when I lost my narcotics last month.Luckily I still had my Neurontin and seizure pills. I’ve been dealing with this for a long time but I need advice. Does anyone know any way to get relief, just a little?? This isn’t the first time I tried to tear the skin off the back my legs but it’s definitely the worst.I really think it feels better after tearing it up or making a bruise or swell...Maybe is just a different feeling like with the tens unit or the stimulator does.I tried getting the stimulator implant but the doctor called me frantically saying go to your pain doctor and have him remove it NOW! I think he was worried about the bullet fragments I have in my nerves, not sure what the issue was there I still have machine never heard from the doctor again. Weird Huh? Even if no one has any advice for me I’m glad I got my story out maybe it will help someone. I understand what you guys are going through. It takes a strong person to endude nerve pain. Peace be with all my ces buddies. Amy

Re: CES has been my “friend” since 1/1/1994

Amy, I am so sorry to hear of the pain you have had to go through but know from reading your post that you are determined to see the glass as half full rather than give in and see it as half-empty. That's half the battle right there, ones mental attitude.

I'll make a simple suggestion which most people disregard because it sounds too simple. I found, as have others, that when those legs nerves go crazy and you think you can't stand it, one thing will work. Try a thera bead pad, available at some pharmacies or over the internet. They are not expensive, take no electricity or batteries so they simply do not wear out. Mine is at least 25 years old and while the outer cover is a bit shabby, it still works as well as the first time. You zap it in the microwave a couple of minutes and - this is important - apply it to the lower back as that is where the agitated nerves come from, not in the legs themselves. The beads inside the pack emit steam heat and for some reason that soothes the agitated nerves far better and faster than pain medication. Used in conjunction with pain medication, they are very helpful. For one thing, you've little to lose by trying them as they don't cause addiction like pain medication; helps you to take less pain medication if you remember to use them when the pain hits. I keep one next to my recliner so I know exactly where it is and can put it to use in minutes. I don't have a technical reason why steam heat works better ad faster than a heating pad but it certainly does and is so much faster. Those who have tried it agree that they really work... the trick is to remember to use them rather than grabbing another dose of pain medication. For myself, they have enabled me to use less pain medication than I would have otherwise done. The thera bead pads are not expensive and its best to have two since they need to dry out between uses...then they are ready to go again indefinitely. The natural response is to put the pad where the pain is... not so with CES, the pain comes from the agitated and injured nerves in the spine so put it very low; I put it behind my back while sitting in a recliner; that way my lower back is pressed against it so all the heat rests against the lower back, all but sitting on it but find the best place for you. And in that position between my back and the chair, the pad stays hot longer. My legs can be driving me crazy and a few minutes of that steam heat and you can just feel the pain letting up. I've bought a lot of things since having CES and thera bead pads are worth more than their cost in their ability to relieve pain quickly. Pain in the coccyx area is also relieved with this pad.

Try it, you might like it! Hang in there, there are a bunch of us hanging back in the shadows that used to be very active on this site. It helps to talk to others who understand exactly where you are coming from and realize you are not alone.

ej :relieved: :+1: