Groups > Coping with Chronic Illnesses and Pain

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Group admin:: Kandra
Created:: January 30, 2008
: 212 Members

Group Tags:

chronic, illness, pain, support, chronic pain, coping

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Information and websites for body & soul

Posted: Aug 17, 08 2:26pm

Hi I'm new to these pages so forgive me if someone else has started a thread on this topic. As someone who lives with the chronic pain of Fibromyalgia I'm always looking for more information.... you can never learn enough and each of us has had experience with different things which work or don't work.

I thought that perhaps this page could be a spot to post sites you find that have been helpful or informative in one way or another - whether it is spiritual, medical, herbal, diet.... you get the idea.

The first site I offer is www.butyoudontlooksick.com . You will find The Spoon Theory (written by Christine Miserandino, who has Lupus and was frustrated when a close friend still did not understand what she deals with on a daily basis) in the sidebar at the left.

I've had the same experience where people look at me as if I'm just being odd, picky or just plain difficult when I decline an invitation, can't make a deadline, or unconsciously rub a tender spot to ease the pain.

I don't like to explain, but there are times that it is necessary... when my body just doesn't have the energy to sit at my desk to work for an hour, when the pain intensifies so that lying still hurts as much as moving, and my mind becomes so foggy I go in circles looking for something and then realize I've forgotten what. I'm having many more good days than bad because of changes I've been able to make in my life, and I'm thankful for that... but the bad days do sneak up every so often.

I hope that everyone adds a list of their favorites... I'll add more in time and hope this becomes a resource for all on TBD. It might be a good idea if on the posts that follow the first item/words describe what the link or reference is about so that it might be easily found if scanning the pages.

Thanks in advance everyone. :)

Tags:

Pain, Chronic Illness, Illness, Health, Body & Mind, diet, humor, food

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4 Comments // 3 Members

Mockingbird

Posted: Aug 17, 08 3:56pm

Hi KathyArlene and welcome!

I know that there are quite a number of members with fibromyalgia among other things. Many of the members of this group have multiple problems including depression and anxiety that accompanies chronic pain. There are people with cancer here and most other physical problems as well.

If possible, it might be helpful to you if you could change the title of your thread and insert "fibromyalgia" in it to catch people's attention if that is what you're really looking for.

Take care!

mb

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KathyArlene

Posted: Aug 17, 08 4:45pm

Thanks Mockingbird - Actually... I meant any problem... I've found many overlap... I have FMS (though was diagnosed borderline Lupus with blood tests), I have Chemical Sensitivity Syndrome, A FMS problem which mimics Celiacs Disease. I have a brother with Cerebral Palsy and my Mother is dealing with a Cystocele, my Dad has Arthritis.

I have researched FMS, and have many books on it, and constantly look for new things online. What works for one may not work for another.

What I was trying to do was create a spot where someone could browse what others have found and tried.... whether it's a medicine, a form of relaxation, a pain rub for the skin....

This why I suggested that at the beginning of each post there could be a simple title such as: PAIN RELIEF, RELAXATION, SPECIAL TEA for NAUSEA, etc....

If people could post things they've found that they like, that work, or if they've found something that didn't work for them and wish to give a warning - maybe a site that's selling fake remedies. If someone wants more info they could of course ask a question or pm for details.

If you still feel I need to modify the headline to something more eye-catching, I'll certainly do so. :)

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Rhiannnonn

Posted: Aug 18, 08 12:07am

I have some doctors who don't even believe that fibromyalgia exists. I even had one tell me that it's very closely related. I've never read that anywhere.

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KathyArlene

Posted: Aug 18, 08 5:43am

Rhiannnonn wrote:

I have some doctors who don't even believe that fibromyalgia exists. I even had one tell me that it's very closely related. I've never read that anywhere.

Rhiannonn...closely related to what? and what haven't you ever read?

thanks.... :)

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