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| Jean - Oct 10th, 2005 11:32 PM | |
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Education is power. Get the information together on this condition and hand it out to your family and friends and teach them about what you are feeling and why. Hopefully through this education process they will become more familiar with your condition so you can have the support you need. If that does not work take them to family counseling where the therapist specializes in this condition to better help you family understand the pain you are experiencing. | |
| Anne - Oct 20th, 2005 3:12 AM | |
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thanks :) | |
| Sandra Kramer - Dec 5th, 2005 11:18 AM | |
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I would also like to know how to explain the pain to my family and friends. My children think because they can't physically see it and I'm not in a hospital then I must be fine. | |
| Jean - Dec 5th, 2005 8:28 PM | |
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Hi Anne: This is hard but one thing for certain you need to educate your family about this condition. I'm going to give you a couple of sites to go to and print out information for your family so they will better understand.Go to : www.sover.net/~devstar/cmpsdef.htm and then go to a guide for relatives and companions. | |
| Jean - Dec 5th, 2005 8:30 PM | |
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Hi Sandra: try this out too this is for you too .I'll be here if you need more info. or help. | |
| linda - Jan 3rd, 2006 4:44 PM | |
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no one knows your pain i try to work 2 days a week and when i do it flares up evev worse husband dont really understand | |
| coco - Jan 3rd, 2006 5:16 PM | |
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show them the letter to normals... you can fix it up anyway you want.. here it is | |
| coach eve - Jan 29th, 2006 7:17 PM | |
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I suggest arranging a family visit to your doctor's - or to a local support group! | |
| Marita - Oct 8th, 2007 7:04 PM | |
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These days it seems emailing is a very easy way of sharing things. That way, they won't necessarily feel confronted and they can sit in their own 'comfort zone' while reading about and hopefully understanding what you are dealing with. Maybe email them url's to pages, that also will give a good '3rd person' authority, as family members are often not too good at listening to each other in these cases. Or if they are willing, take them with you to your doctor(s), let them talk with him/her and ask questions etc. Maybe even leave the room and let them ask questions they might feel ashamed/uncomfortable asking while you are there, like "Is she lying to me, is she making this up, how much of it is real and... I have no idea what to do - help!" | |
| Robin1237 - Oct 23rd, 2007 4:06 AM | |
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I think this is Lyme disease, a bacterial infection usually transmitted by a tick bite. We can't see the bacteria unless in darkfield microscopy. But they invade our nerves and soft tissues and cause all the symptoms. Go read at http://flash.lymenet.org and see if you think you match what people are describing there. If so, people there can help you find a Lyme-knowledgeable doctor in your area. | |
| islandguy - Oct 25th, 2007 12:39 AM | |
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I am not promoting another site but I like some of the explanations that they have for the "normals". I like them and have copied them and given copies to family and friends so that they may learn more about the "invisible" "but you don't look sick " disease. Hope this helps...it helped me... | |
| islandguy - Oct 25th, 2007 2:46 PM | |
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Woops....forgot to list the site... it is........http://www.fibropains.com/. | |
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