Listening.
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April 2, 2008 at 11:43 am
I think this forum is important, at least to me.
I find myself alone a lot of times. Not sure if anyone including my family understanding what and how I am feeling. I can tell them my nerves hurt but they don’t really understand. I can tell them I feel fatigue but I don’t know if they really understand especially the boys(7,5,3). I try to do things with them when I can but some of the things I can’t do like I did before GBS and that frustrates me and them. I am almost in constant pain even though I wonderful neurologist and doctor. I take 150 mg of lyrica and other medication for my nerves. I hope to soon be off of it all as I continue to get better. I get depressed easy and have alot of people tell me to just “think positive” or “try not to think about your pain”, etc. I am always worried about my health, is getting better or worse when I have tingling or fingers, toes and have trouble going to restroom. I think back to the day the doctors told me it might be MS, or GBS. I am glad I have a wife who puts up with me and I know she is stressed by the disease. I think it affects everyone in the family and I am tired of it. I hope everyone understand what I am going through on this forum. At least you know. Things are changing and change every day. I may go a few days with no migraine but the my nerves will kill me. Hurt like hell. Or I might wake up with a migraine that will last several days. It seems like something goes on everyday. I do try to take naps everyday. I know that gets old with my wife as she wants to do things with me but I just feel so fatigued or fatigue easy. Is there any help or encouragment for those who take care of us. I sometimes feel like she is alone and it makes me upset. I am trying the best I can do everyday to feel the best everyday. I am tired of being sick and tired. Will it get better? When will the pain stop or will it stop? When will it get better? When will I stop worrying? Does that ever happen?Thanks for listening and letting me blow off steam.
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April 2, 2008 at 11:52 am
Hi Kinney,
Things WILL get better, it took Kevin about a year until the headaches started going away. Besides when he gets treatments, he does still get them occasionally. I think I mentioned on another post about immitrex, check it out. Also, i have no experience with Lyrica personally, but 150 is nothing. My father in-law takes 1600 a day. Others will chime in about that, many on the site use it. Good luck!
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April 2, 2008 at 12:20 pm
Dawn is right. It appears that you may not be taking enough Lyrica. Remember whatever the amount you need now probably won’t stay that high. Yes, it does get better.
What you are feeling emotionally is “normal”. You have taken a “not planned for” trip into a strange country where the language and customs are unlike anything you have ever experienced 😮 As with any illness, family comes along for the ride! They have to adjust also. Of course it’s hard on your wife. Perhaps she could read the threads especially for caregivers ~ it’s a really tough job!!
No one can truly understand what your body/head is going thru. That’s why it’s wonderful to have a “family” right here 🙂 Keep sharing with us, asking questions etc. We really do care. For me, I found that researching my disease helped me to feel more in control. Hugs to you and your wife.
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April 2, 2008 at 1:36 pm
Kinney, I was speaking with a pharmacist because I am not being covered for the drug I take which is gabapentin. It is used to prevent migraines (I was diagnosed with them years ago) so they won’t cover it. I have been on gabapentin now for about 6 months and my migraines went away. Yesterday, things happened that ended up with me missing my daytime doses and low and behold, I woke up this am with a migraine from #$%@. You may want to look at whether Lyrica is used for migraines and if not, maybe switching would help and you could kill 2 birds with one stone. Worth looking into.
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