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Post by claireboe on Oct 21, 2011 22:22:12 GMT -5
Hi ladies! As a re-introduction, I am not an endo sufferer, directly anyway. My 17yo dd has been suffering with severe, chronic pain for two years. We have tried lots of things, almost none of which have worked to alleviate her suffering. She now has migraines, as well, so is being treated by a neurologist for those.
The two things that have helped marginally are Vicodin and Lidoderm patches. Our insurance wouldn't cover the Lido until she tried a month of neurontin (gabapentin)...which put her in bed for six days, and caused lots of crazy emotional side effects. I have never seen her so depressed. She will be off the neurontin in a few days, at the doctor's order.
We had a miracle of sorts recently. I have wanted to take her to acupuncture, and did one time. She didn't like it; said she felt nauseous and just bad. The fact that insurance doesn't cover it made me drop the subject. Her pain management doc suggested it again, so she agreed to try again. Pain doc put in for an auth (which I was sure would be rejected), BUT WE GOT AUTHORIZATION FROM OUR HMO FOR ACUPUNCTURE!!!!! So, next week, she starts acupuncture at the pm clinic.
Just an update of sorts. If you're the praying type, prayers for her are GREATLY APPRECIATED. This has been so very hard.
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Post by Karen on Oct 22, 2011 15:38:57 GMT -5
Ooh, I had an AWFUL experience with gabapentin! I feel for your daughter! I had wild mood swings like I had never seen, sobbed so hard I was about to throw up, and had some really dark thoughts. I'm sorry she didn't have a good experience, either, but I'm so glad she's going off it!
Good news about the acupuncture! I hope she's able to get some relief, and even better that insurance will cover it!@
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Post by JC on Oct 22, 2011 18:30:09 GMT -5
YAY! You're back!! Glad to hear things are going well!
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Post by claireboe on Nov 21, 2011 23:26:48 GMT -5
BIG FAT FAIL with the acupuncturist. He has a very heavy accent, and clearly did not understand endo (or us). He mostly treats people with back, neck and knee pain, so he is out of his element. Sarah gets nauseated every time they do acupuncture, so he said she has a "stomach problem" that he wants to address before addressing the pain. Uh, WHAT?! I think I am going to have to find a way to take her to an acupuncturist who knows what the heck we need, and who has treated endo before. Meanwhile, she cooked a full Thanksgiving dinner Saturday night, and has been down ever since. She is babysitting tomorrow all day, and had a major melt-down because she doesn't know how she's going to do it with this pain. This is just not right. A 17yo that has to gauge her activity based on her pain level every.single.day. I am beyond frustrated and heartbroken. ETA: She asked me yesterday if there was any way she could get a hysterectomy.
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Post by JC on Nov 22, 2011 6:02:18 GMT -5
That's so heartbreaking. I'm so sorry. I guess I don't blame her for wanting a hysterectomy but that's such a big decision at such a young age. Poor thing!!
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Post by Karen on Nov 22, 2011 7:00:03 GMT -5
Hmm, as for the acupuncture, there could be some truth to the stomach problem. Digestion plays such a huge part in our well being, and a lot of non-traditional practitioners bevieve digestion must be addressed before the body has any sort of chance to heal. that being said, if you don't have a good vibe from him, trust your gut.
I feel for your daughter, I really do! It's hard to even think of having a normal life when you're in so much pain. have you considered pelvic physical therapy? For several of us, it helped immensely, and didn't come with the side effects of meds. if you haven't already, I'd really encourage it!!
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