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Post by Steelback on Feb 1, 2014 17:18:09 GMT -6
It's been 10 years now since my ependymoma was diagnosed and I underwent a partial laminectomy and spinal fusion. Since then I've been living with horrendously painful spasms in my legs. But for some time I've been terrified that the irritation from either the tumour or the hardware is making it difficult to breathe, and I have to wear loose-fitting pants and lie down in order to breathe correctly. Last summer my doctor prescribed Lyrica 75 mg for me, but I've been too afraid to take the pills. So not only am I in pain and fear, but I'm also ashamed of myself for being a coward.
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Post by feliciafawn on Feb 2, 2014 6:21:15 GMT -6
Don't feel like a coward. These things are very taxing on your emotions. Do you think maybe the breathing issues are causes by anxiety when the pain gets bad? I know when I would be in pain (I have a spinal cord ependymoma) I would get something similar to a panic attack and then I would feel like I couldn't get a full breath. When I calmed down, so would my breathing issues. Just a thought. As far as the medication, perhaps discuss your concerns about it with your doctor and he will be able to hopefully give you peace of mind.
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Post by amychristine on Feb 3, 2014 8:24:26 GMT -6
If you are concerned about the side effects of Lyrica, tell your doctor and request an alternative medication. Cymbalta helps quite dramatically for some patients with nerve pain (it's prescribed for fibromyalgia), and I believe it has fewer side effects than Lyrica. I'd also consider changing your diet. Remove all gluten, dairy and corn...all of which cause inflammation. Also avoid sugar, since it really messes with our nerves and can cause pain, etc. Celebrex works well to reduce inflammation (caused by a tumor and/or surgery). Add rosemary and turmeric to your diet (anti-inflammatory). Best of luck, and please keep us posted on your progress. YOU ARE NOT A COWARD! You are so brave for undergoing surgery!
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Post by von on Mar 17, 2014 17:34:52 GMT -6
I have low dopamine, I theorize it may have bottomed out from the pain levels. Lyrica and Cymbalta made my symptoms worse, more serotonin in the blood when dopamine is low further lowers it. Doc can check your prolactin levels. Those sort of things can muck with your central nervous system so it's good to have as many tests as you can to eliminate problems. Lyrica seems like more of a fibromyalgia thing, not as much for severe pain. Tramadol or gabapentin might be a better fit for pain. I'd find a good neurologist, one in your area who people rate highly online. I'd done pain specialist as well, but I've found my neuro knows a bit better about the pain because he specifically knows a lot about the damage I have.
All that being said, you have to look at the full picture. If it's not helping, tell your doc, if he's good he'll switch to something else. If not, you need a different one. Our issues aren't your standard fare, have to have the best care.
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Post by pringleman on Mar 23, 2014 6:04:43 GMT -6
Hi Steelback,
It could be that your muscles in your chest are tight and that is what is affecting your breathing. That is a problem that I have. Lying on your back with your arms out can relax the chest to make it easier to breathe. My physio has me deep breathing with my hands on the sides of my chest to feel the chest expand. The other thing is to build up the back muscles as these atrophy after the operation.
I am in awe of you having lived with this for 10 years. I have only been in the club for 2 years. It is not easy. One of the oldies I met when I was doing the Osteo class at the gym said, 'Getting old is not for sissies.' Tumours are like advanced aging.
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