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Replies to 'Living with Chronic Pain'
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March 3, 2006, 5:45 am PST
 Quote From: cloudymom I understand so much how you feel. if have fibromyalgia with infasis on chronic fatigue. You did not mention how old you are. I am 42 trying to raise 3 children with a husband who is out of town all the time. I am presently dealing with a flare up. everyday I feel like I can't go anymore and though I keep going my accomplishments and productivity is less each day. I wish I could find help during times like this. I do not have family in the area and i only have two family members who even acknowledge that its real and of course they are very far away.
But I put my emote at hopeful because I am reading a book Written by Dr. Amand titled "What your doctor may not tell you about fibromyalgia. He says its reversable but he highly recommends having your doctor help you through the treatment. I've tried everything else I might as well try this. I will be meeting with my doctor and telling her about it hoping she will think its possible and hoping she will help me. The book says that you will feel worse before better but going on like this I figure what do I have to lose.
I won't tell you to look on the bright side or any or moronically cherrie euphamisms because I know from experience some times you just don't even see or know a bright side to look on. but I hope that knowing someone is in the same place and understands will help you. I met a lady from church who has it. fortunetly we can share how others don't believe nor do they help us. We think the lord gave us each other just so we can have some one who understands.
this book says that depression and overweight is part of it.
I understand what you mean about people your age doing wonderful things. i too had so many goals and dreams for my life as a woman and then later as a mother but I can't make any of them happen. I always wanted to play piano and I even have one but it hurts just to type this how can I play piano. I wanted to run and play with my children, go bicycling and camping as a family. basically live love and laugh but it just doesn't seem to happen.
I will be praying that god will give you strength and courage.
sincerely,
Me I know how you feel, oh so much. I missed out on my daughter's whole high school year and had to ask my husband and other mothers to be at special events, in my place. I made it through graduation but paid dearly the next day. But I would love to able to go to the mall with her, out to lunch, etc. and she is saddened by this as well. I also cannot do the things I used to with my husband. Eventually, you come to acceptance, but never fully. Know you are not alone and know that even the little things you can do for and with your family are appreciated by them. Sharing in your pain, Curlyone45 |
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March 3, 2006, 7:57 am PST
Quote From: cloudymom I understand so much how you feel. if have fibromyalgia with infasis on chronic fatigue. You did not mention how old you are. I am 42 trying to raise 3 children with a husband who is out of town all the time. I am presently dealing with a flare up. everyday I feel like I can't go anymore and though I keep going my accomplishments and productivity is less each day. I wish I could find help during times like this. I do not have family in the area and i only have two family members who even acknowledge that its real and of course they are very far away.
But I put my emote at hopeful because I am reading a book Written by Dr. Amand titled "What your doctor may not tell you about fibromyalgia. He says its reversable but he highly recommends having your doctor help you through the treatment. I've tried everything else I might as well try this. I will be meeting with my doctor and telling her about it hoping she will think its possible and hoping she will help me. The book says that you will feel worse before better but going on like this I figure what do I have to lose.
I won't tell you to look on the bright side or any or moronically cherrie euphamisms because I know from experience some times you just don't even see or know a bright side to look on. but I hope that knowing someone is in the same place and understands will help you. I met a lady from church who has it. fortunetly we can share how others don't believe nor do they help us. We think the lord gave us each other just so we can have some one who understands.
this book says that depression and overweight is part of it.
I understand what you mean about people your age doing wonderful things. i too had so many goals and dreams for my life as a woman and then later as a mother but I can't make any of them happen. I always wanted to play piano and I even have one but it hurts just to type this how can I play piano. I wanted to run and play with my children, go bicycling and camping as a family. basically live love and laugh but it just doesn't seem to happen.
I will be praying that god will give you strength and courage.
sincerely,
Me
This is my first time on the message boards. I also have Fibromyalgia and RA, diagnosed with RA in 2001, Fibromyalgia -2002, and seems like one continual flare up. It does worsen with the weather and after I've had a busy day. I don't have anyone to talk to about it, because as several others stated, not many people really understand the kind of pain that makes it where I sometimes can't get relief even with the pain meds I take. I've had Ulcerative Colitis since childhood, but had been in remission for about 11 years before having a huge flare up beginning in June 1999, which ended in my having a total colectomy with a j-pouch in Sept 1999. My doctor feels that all this is what brought on the Fibromyalgia and RA. I feel like I have never got my health back, my kids and hubby feel like they haven't got their mom and wife back. I do have a wonderful hubby who takes great care of me when needed, and is very understanding. But I am sure many of you also know that Fibromyalgia is just as difficult for our spouses as it is us. He steps in and cares for our children or cooks dinner or shops, or whatever needed, which is wonderful, but I feel so bad when he has to do something I should be able to take care of myself, and feel even worse when I know he is 'settling" for cuddles instead of intimacy. Like everyone else, I've tried just about everything on the market that claims to help, but nothing does. To make matters worse, I am allergic to a lot of things normally prescribed for RA or Fibro, and the rheumatologist I was going to finally told me she couldn't help me any more than my regular doctor could by prescribing pain meds. (I have a severe allergy to all steroids, which are often prescribed for RA joint pain) I also have the memory problems (even short term, which drives my kids crazy), confusion, exhaustion, and plenty of problems with depression and can't lose weight no matter how little I eat. Even though most people who have had their colon removed lose weight as a result. I would very much be interested in hearing more about the book you mention and what it suggests. Do you think I could get it from Amazon? One thing that has helped me lately are the new Lidoderm patches that are available by prescription now (lidocaine). You can put it right on the painful area and it relieves it within 5-10 minutes. I really like them. They are pretty good size, but you cut them to fit, depending on the area and the amount of pain, and they last for up to 12 hours. I recently fell on my knee and the doctor tole me I had torn and bruised some of the tissue around it, and gave me crutches for 2 weeks. After staying off of it for 2 or 3 days and using the patches on it, I could walk on it with just a little soreness. I think it must help with swelling a little too. I'm sure if you folks are like me, your pharmacy bill is huge. One thing that really helps me there is the mail order prescriptions that my insurance company has (most people I talk to have this option on their insurance). The doctor faxes in the prescription for 3 months worth, with refills, and you get the 3 months supply of meds for the cost of one month at a local pharmacy. It really adds up to a lot of help when you get into the stuff that doesn't have a generic. (3 months of mine cost $40, but if I got it filled locally it would be $120 for 3 months) You can't do it with most of the strong pain meds, but it does work with Loratab. Sometimes with the generics it is less for the 3 month supply than one month locally, just because they sell it in bulk. I'd enjoy hearing from any one who wants to chat. I don't know anyone else who has this so it would be nice to have someone who knows what it's like. Hang in there, Cindy racin@netzero.net
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March 20, 2007, 9:56 pm PDT
Quote From: cloudymom I understand so much how you feel. if have fibromyalgia with infasis on chronic fatigue. You did not mention how old you are. I am 42 trying to raise 3 children with a husband who is out of town all the time. I am presently dealing with a flare up. everyday I feel like I can't go anymore and though I keep going my accomplishments and productivity is less each day. I wish I could find help during times like this. I do not have family in the area and i only have two family members who even acknowledge that its real and of course they are very far away.
But I put my emote at hopeful because I am reading a book Written by Dr. Amand titled "What your doctor may not tell you about fibromyalgia. He says its reversable but he highly recommends having your doctor help you through the treatment. I've tried everything else I might as well try this. I will be meeting with my doctor and telling her about it hoping she will think its possible and hoping she will help me. The book says that you will feel worse before better but going on like this I figure what do I have to lose.
I won't tell you to look on the bright side or any or moronically cherrie euphamisms because I know from experience some times you just don't even see or know a bright side to look on. but I hope that knowing someone is in the same place and understands will help you. I met a lady from church who has it. fortunetly we can share how others don't believe nor do they help us. We think the lord gave us each other just so we can have some one who understands.
this book says that depression and overweight is part of it.
I understand what you mean about people your age doing wonderful things. i too had so many goals and dreams for my life as a woman and then later as a mother but I can't make any of them happen. I always wanted to play piano and I even have one but it hurts just to type this how can I play piano. I wanted to run and play with my children, go bicycling and camping as a family. basically live love and laugh but it just doesn't seem to happen.
I will be praying that god will give you strength and courage.
sincerely,
Me Hi...I have fibro and was diangosed six/ myabe seven years ago. I have to rely on clinics so treatment is almost non existant for me . When I was first diagnosed I was flat on my back and couldnt stand the feel and wieght of bed sheets on my body. Because of the stigma of pain meds all I could gt the dr's to do was perscribe phsych meds for the pain. They weredriving me nuts... I quit them. YOu mentioned the book and I watned to tell you that and prayer has been my salvation. I got back in postitive atomosphere... my family is so dysfuctional that I moved away from them because the stress was not helping. so I have no support. I didn't read the book liine for line, it was too complicated for me. But when I read in there about hypoglycemia I could not get anyone to test me. I on my onw cut out caffein, carbs, white sugars... my pain reduced immensly. I still have very bad times and one 'break down' usually crashes my whole body for months at a time. My biggest problem seems to be infections and my immune system. I hve asma and am very sensitive to chemicals. The least exposure triggers pnuemonia. I have had it at least seven or eight times in the last five years... bronchitis, female infections, sinus infections, uti's... Every time I have a pain they shuv it off on the fibro. I know there aer things going on in my body that have nothing to do with the fibro... I hve gotten passed around in circles to ER's and clinics. I have given up hope of ever getting any help through doctors. I manage the best I can with God all by my slelf... I get no help. I have had blood in my urin for months... extra protein. I gave up getting anyone to follow up.
Do try the ideas for hypoglycemia in that book and see if it doesnt cut down on pain.
I also have not been able to get disability because I can't get a dr. to stick with me long enough at a clinic to prove I need it....
ANyway..going to try to start my own business on my own terms. I feel like it is what God showed me to do. I am tired of expaining or tyring to explain to people with only condemnation on their hearts that even though I hve well times, commiting to a job twenty four seven not knowing what tomorow is going to bring...I would be fired in a heartbeat. I am down with infections so much. I worked out a t the y alot while I had transportation to get there. I treid walking to the post office the other day forgeting I had abeen down most of the winter... I was flat on my back for days after that. Funny though I dont see myself that way. I still describe me as energetic and likeing sports. I just want to be like I use to be. But I dont even kow for sure what I hve that is fibro/chroinc fatigue, and waht the doctors have just chalked up to that becasue I dont have insurance and they are too lazy to look farther. So much for being importtand.... worth something. and valuable.
I would just like to get one good doctor who would look at the whole picture for me just once...all the sypmtoms, all the problems. I now have a tennis ball size mass on the side of one leg they wont look at. garantee it has nothing to do with fibro.
I use to think the worse of all diagnosis could be 'terminal'... I thank God for my life... I dont think people realize the hell of a diagnosis that you have pain you have to live with forever that there is NO cure for.
loveya.
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May 21, 2007, 9:01 pm PDT
Quote From: cloudymom I understand so much how you feel. if have fibromyalgia with infasis on chronic fatigue. You did not mention how old you are. I am 42 trying to raise 3 children with a husband who is out of town all the time. I am presently dealing with a flare up. everyday I feel like I can't go anymore and though I keep going my accomplishments and productivity is less each day. I wish I could find help during times like this. I do not have family in the area and i only have two family members who even acknowledge that its real and of course they are very far away.
But I put my emote at hopeful because I am reading a book Written by Dr. Amand titled "What your doctor may not tell you about fibromyalgia. He says its reversable but he highly recommends having your doctor help you through the treatment. I've tried everything else I might as well try this. I will be meeting with my doctor and telling her about it hoping she will think its possible and hoping she will help me. The book says that you will feel worse before better but going on like this I figure what do I have to lose.
I won't tell you to look on the bright side or any or moronically cherrie euphamisms because I know from experience some times you just don't even see or know a bright side to look on. but I hope that knowing someone is in the same place and understands will help you. I met a lady from church who has it. fortunetly we can share how others don't believe nor do they help us. We think the lord gave us each other just so we can have some one who understands.
this book says that depression and overweight is part of it.
I understand what you mean about people your age doing wonderful things. i too had so many goals and dreams for my life as a woman and then later as a mother but I can't make any of them happen. I always wanted to play piano and I even have one but it hurts just to type this how can I play piano. I wanted to run and play with my children, go bicycling and camping as a family. basically live love and laugh but it just doesn't seem to happen.
I will be praying that god will give you strength and courage.
sincerely,
Me I'm 32 yrs old from Australia. I've been married for 13 yrs and have 2 children, 14 and 12. I was diagnosed with Fibromyalgia in January 2007. It has steadily gotten worse, especially since the cold weather is setting in. I can no longer go on long walks with my husband, or take my kids on hikes or swimming. When I go out I'm in a whellchair because I can't walk far. I'm on a lot of meds for the pain. I also attend rehab- hydrotherapy, gym and physio. These have all helped. But through it all God has given me hope and strength. I'm still a Youth Leader at our church- have for 8 years. I also run a disciplship group for young teens. (6 years) I love these and the team and kids have been great. Yes, I lead from a wheelchair. Another leader is my legs. We always have a ball and it keeps me thinking beyond myself and my pain. We have had to overcome some obstacles but I can still contribute to the community even if I have a disability. It has made me be even more creative, especially in how I spend time with my kids. I also realise that I am not the sum total of what I do, but it who I am as a person that counts. I've learned that I still have the ability to be able to change what is going on that I don't like and would like changed. I can still be a great mum because I am available to listen to my kids and they know that they can talk to me about anything. Keep on holding on because God's hope NEVER runs out. |
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