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Old 06-13-2004, 11:39 AM   #1
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mollymadison HB User
Question Ideas anyone?

Since I have been diagnosed with fibro, all I can think about is: What can I do to make it better for me? Here's my thoughts so far:

1.Ordered books about Fibro
2.Look into Yoga classes
3.Ask PCP about Pain management or refer to Pain Management Dr
4.Ask PCP to refer to Physical Therapist
5.Stretch on my own
6.Walk but, at my own pace
7.Work on the emotional side that I'm having a hard time with

Does anyone have any input on these ideas? Can you please share your experiences with me? What has worked for you and what hasn't?

HELP

 
Old 06-13-2004, 03:57 PM   #2
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Re: Ideas anyone?

Warm water pool & hot tub does wonders for my fibro pain. You can check with the local Arthritis Foundation to see if there's a warm water pool in your area; usually kept at around 90 degrees; very soothing and easier to do stretching, etc. I also sleep with a heating pad almost every night putting it on whatever is hurting most at the time. I also am working on meditation/deep breathing relaxation but have to remind myself to do it often during the day. Good luck. Kristinita9

 
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Old 06-13-2004, 09:45 PM   #3
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Re: Ideas anyone?

Hi Molly,

Yoga has helped me tremendously. If you find that regular beginners yoga is too hard try getting a prenatal yoga video. The modifications in there are great for use if you have fibro. That way when you're having a bad day you can still do it. It's lengthened my torso, straightened my spine and helps to stretch out all those tight spots. Plus it is very relaxing and teaches you to pace yourself throughout your day.

Herbal supplements have also been very helpful. Search for herbal remedies fibromyalgia and you should get serveral websites that give specific items for different symptoms and amounts to take.

Heat and ice when I have swelling is great. Hot tubs and warm pools are great.

Sometimes I feel like the emotional stuff is the hardest part. I wish I'd come to this board two years ago when I started having problems. Of course the first year I really couldn't sit anyway.

My friends and family are great but it's hard to explain to them how it feels to lose so much of yourself. Pollyannas will tell you to look at what you can still do and think about how much worse life could be. But I think that's a load of poop. We all do that all the time.

I think the most important thing is to think about, express and acknowledge what you've lost first before you can truly appreciate yourself and think of all the good things you can still do. You have to grieve and let go of it in order to move on.

I had to deal with not being able to front a rock band anymore. I had to deal with not being the smart helpful "go to" person at work anymore. And many other things. But once I did I could start to appreciate the rare occasion when I can paint my finger nails. I appreciate it when I do get to go have a little fun. And I've learned to pace my life according to what my body needs so that I can get more out of life.

For instance, I knew Friday that Saturday would be a big day so I mostly rested. No housework or tons of sitting, just did what I had to do to take care of Andrew and I. Saturday morning I stayed in bed and did my stretching. We went to the circus and I took something soft to sit on. I stood up every ten minutes to stretch while we were sitting and watching. After the circus we went and took a nap on the grass in the park. Then we stopped by a family birthday party. We spent an hour or so there and then headed home. With the extra rest I was able to get the most out of two social occasions. If I had pushed myself all day Friday or forced myself to sit for two straight hours on a metal bench I wouldn't have been able to do so much.

Listen to your body and pace yourself. During the first year of my disability it could take me the whole entire day to fold a load of laundry. I would do one or two items and then rest. But I got it done and didn't hurt myself worse.

I hope some of that helps - Andy

 
Old 06-14-2004, 06:27 AM   #4
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typingterror HB User
Re: Ideas anyone?

I would question going to physical therapy. I have been this route twice a year apart for several months and wound up in worse shape than when I started. I do not believe they are equipped to treat fibro patients as it is more rehab after surgery or injury and does not include whole body malfunctioning as we have. Any doctor who is willing to treat and work with fibro patient is good. It does not have to be a specialist as a good primary care physician can do just as well if you are lucky to have a good one. It is trial and error for all of us as we all react differently to medications plus most of us are blessed in having more than one type of ailment. The emotional aspect is the hardest to conquer. It is like any illness and you have to go through several stages before you accept your condition. It basically means living your life at a slower pace with modifications. Having a fibro support group is really the most important as you get to vent your feelings with so many others who are in the same boat. We all have our self-pity parties at times which is normal. Just remember you are never alone. No matter how bizarre your symptoms are many others will share them or even worse and by communication with them you actually find comfort in fact that there are some symptoms you do not have. Educating yourself about fibro is very helpful, but also frustrating as there are so many different theories. However, you rapidly learn that you have to do what works best for you and listen to your body. (TT)

 
Old 06-14-2004, 05:07 PM   #5
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mollymadison HB User
Talking Re: Ideas anyone?

Thanks everyone for your input. I welcome any input and will use them. Thanks again!

 
Old 06-16-2004, 06:08 AM   #6
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DecLady HB User
Re: Ideas anyone?

Molly, I am sorry that you got this DX, but you sound like you are on the right track at this point. Don't be surprised to find yourself discouraged at times...and frustrated. If you read this board you will see alot of the ups and downs of this illness. I think that advocating for yourself is best, get educated, and figure out what works for you and what doesn't. I wish you better days..and less pain!

 
Old 06-16-2004, 07:14 AM   #7
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pa235 HB Userpa235 HB Userpa235 HB Userpa235 HB Userpa235 HB User
Re: Ideas anyone?

I agree about the physical therapy, they certainly made me worse, their motto is no pain no gain, I got more pain and no gain. I see a chiro weekly and he helps not a cure but a help and even that is good.

I use a lot of microwavable hot packs and for localized pain, like my lower back or under the breast rib pain I really like the Thermp care heat patches, I buy the neck to shoulder size, they give you 8 hours of heat. Resting helps and I wish we had a warm water pool near by, I would certainly use that facility.

Gather all the info you can, stay intuned with a board as this, where you can vent and talk about your pain, this is a big help. Also I love devin Starlyns books on FM.

Good luck to you.
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Fibromyalgia
Myofascal pain syndrome
Costochondritis
Arthritis, cervical and thorastic

 
Old 06-24-2004, 08:47 AM   #8
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PapaRoux HB User
Re: Ideas anyone?

Walking at my own pace gets me around with others, even if they are ten feet ahead of me. I refuse to go at their speed and it lets me walk without fear of having lots of problems with my/legs/body when I get home.

Ed

 
Old 06-24-2004, 10:02 AM   #9
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PapaRoux,..I have this picture in my head...

Of you "walking at your own pace"....and the world moving around you! Oh that it always worked like that! I know that I can't go as fast as I used to- used to be I was always walking ahead of my husband...now I can't keep up with him. But, I do the best I can depending on the day..and then holler at him if he is getting too far ahead! ;-)
Sue

 
Old 06-24-2004, 10:10 AM   #10
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DeadManWalkin HB User
Lightbulb Re: Ideas anyone?

NUTS TO YOU ALL, I'M CALLIN' THE SCOOTER STORE!!!!! LOL!! Just kiddin, I just felt like screamin' that. Just call me "DeadManScootin" ...................... Matt S.

Last edited by DeadManWalkin; 06-24-2004 at 10:11 AM.

 
Old 06-24-2004, 11:05 AM   #11
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DecLady HB User
LOL "Dead"...my MIL has a scooter...

And she lives near enough that I have been thinking about borrowing it when we take my grandson to the zoo..no way can I keep up with a 6yo all day long! Unless I am motorized!

 
Old 06-25-2004, 06:05 PM   #12
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Dimeit HB User
Re: Ideas anyone?

Hi Molly.If you do not have a dentist that knows how to find and treat bacteria infections in your teeth and gums and believes they can cause health problems you should think about finding one.My FMS was cured by a dentist. Terry

 
Old 06-26-2004, 12:01 PM   #13
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PapaRoux HB User
Re: Ideas anyone?

DeadManWalking and others---

You know....I see those people who look so healthy zipping around stores and casinos with those Scooters and I sometimes think: wouldn't it be nice?

Who knows, maybe someday......

I asked my FM doc if I'll ever be hospitalized for FM and he said 'Absoulutely not!' So unless that happens I will probably be Scooter-less, but it sure looks like a nice way to ease pressure on the body.

Ed

Thanks MM about the weekend caring....'preciate it......

 
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