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MrsP0721 posted:
I'm new here, I'm a 28 year old, married, SAH mother of 3 (10 son, 6 daughter and 3 son). I was diagnosed with Fibro in April, but have been dealing with the issues since the birth of my son in July '08. I have a loving husband who is so understanding, thank goodness, but I'm looking for someone I can talk to about my pains and everyday struggles without feeling guilty. I know this 'condition' isn't my fault, but I feel like if I talk to him too much about it that he'll see it as an excuse to be 'lazy'. My mother, for as long as I can remember, has complained about every ache or pain or cold or cough and it's caused a lot of people to think she's making it up for attention (which fits her personality) so I've always thought, if I complain about something too much, people will think I'm making it up for attention. I just want to find people who relate and I can talk openly with and not feel judged.

I've got all these emotions, from sadness to anger to guilt and it's a daily struggle for me. I also have a tear in my spine and 2 buldged disks so I have more then one 'life sentence' as I call it, they'll never go away and will more then likely only get worse and it makes me so angry. I'm constantly having to tell my kids that I can't play right now, I can't do much of anything and it really pisses me off (excuse the languge). I'm hoping that things will actually get easier, I keep telling myself that it's new to me, I have to learn how to deal with it, find the right combo of meds, but I'm also worried about when I do find that right combo (like right now, I'm ok, I'm taking Cymbalta for Fibro and a muscle relaxer and norco for my back), that my body will get used to them and I'll have to start over, or start increasing doses, I've been on my norco for only a few months and it's already losing it's effectiveness.

Anyway... is there an online support group, chat type thing or anyone I could talk to directly (emails or what have you)? How do you manage? Who do you talk to?

Thanks for listening!
Jennifer
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kariUT responded:

I agree that it helps so much to talk to people that are going through the same things I am on a daily basis. It lets me know that I am not alone, and I am given hope as I see people who are "making it" with such a diagnosis as fibro.

I can talk to my mother about the pain, but I choose only to do so when the pain gets bad. I know I will have pain every day and I feel that I would be a broken record if I talked about it all the time, so I choose to let her know only when I am in worse pain than usual. I feel in these times that I need to tell someone—it helps me handle it better for some reason. I purposely have not told anyone except my family though, that I have fibro. There are times when I physically cannot handle activity, but in general I didn't want to give myself an excuse to not do things, if that makes any sense. This past summer I learned to wake surf, I have gone to parties and gone dancing with friends, I have played with my baby cousin, and I will go rock climbing soon—things I never would have done a few months ago. I refuse to sit back and be in pain and not live—a stubborn streak that sometimes gets my into trouble because sometimes I over-exert and refuse to take it easy when there is work or play to be done.

Even still, I get frustrated and angry, that the fibro is not going to go away, and that I will never be completely out of pain. I feel guilty that if I had not had a few months of extreme stress and fatigue (I was working 5 jobs saving money for nursing school) that the fibro may not have surfaced. I want so bad to wake up and not be in pain—I want to be normal. Do you feel this way?

I don't know if you have found this, but I find that when I don't take my meds on time that the pain gets crazy bad. When I take them the pain goes back down to a more normal level (5 or 6). At one point I felt the same as you that my meds were not working and needed to be adjusted, but then my mother and doctor both saw that when I feel better, I do more and then pain gets bad. But that the medications are working. This is just me. Your meds might have to be adjusted someday, but I am happy for you that you have found a workable mix of medications and that your doctor is willing to work with you.
 
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strengthening responded:
Jennifer, I sooo understand all that you wrote. I just posted here for the first time and hour ago. If you are surfing the discussions you can find it titled, New to Discussion. Looking to share.

I am a SAHM of 4 and have struggled for a year. I am such a ball of emotions at any given time: angry, sad, crying, want to sleep, in pain, frustrated and then can be positive, happy, outgoing, empathetic... I'm learning how to live. I am on cymbalta as well. I reached the lowest I've ever been in terms of depression. I don't know that the pain is better because of it be I am certainly not as depressed. The cymbalta has other side effects though that I don't like but I can manage those.

Do you have trouble sleeping? If yes, what helps you stay asleep? sleep meds? I struggle with this every single night.

I am happy to have found a way to share and talk to others. I hope that you enjoy your day today. God bless you.
 
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MrsP0721 replied to strengthening's response:
I do have issues sleeping, especially when I first started the cymbalta, I haven't really found a cure for that, not a good one anyway. I'm on pain meds for my back and honestly, I take a little more then I would during the day, at night... that's the only way I can get any sleep! Now that is just recent, I had a medial branch block on my back a week ago and since then, my pain has at least doubled so its that only thing I can do right now, once I get my back pain under control, I'm going to see about a sleep aid. Everything is all so new to me, all the meds and information, I have hope that one day I will figure it all out and be more in control of the pain, but for now, it's a day by day thing.
I hope you have a great day as well!
 
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namann replied to strengthening's response:
hi, I'm new to this blog and newly diagnosed about a month ago. Fibro patients don't sleep well because of a lack of the deep, restful sleep cycle (non-rapid-eye-movement sleep) and therefore get up in the mornings feeling tired. A doctor specialising in chronic pain suggested I use 2X Melatonin 3mg tablets about an hour before bedtime. Go to bed at a specific time every night to try and regulate the sleep patterns and no caffeine. Prozen (suntheanine 100mg) 2 tablets in the morning helps to make you feel more alert yet relaxed and not drowsy. I use paracetamol and Ibuprofen for the pain. Hope you find something that helps.
 
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limpylizard responded:
Hi Jennifer, I am also new to this site, and a little nervous about complaining to much also. I am way past 28 but was there once, I am always sorry to hear of someone else with fibro, I have dealt with this issue for over 20 years now and I to get angry about the many limitations FM has had on my life style. I finaly, about 3 years ago, was hooked up with a pain managment Dr, well actualy I changed Dr's in the same practice, my first Dr and I were not at all compatiable, but the second was a blessing. He has worked with me and as of now am on Cymbalta Nurotin and Hydrocodon 10/325, it has helped to the point that I am able to participate in my life again. I am an avid gardner and love nature. I think sadness is always there just under the surface for all who have to re-adjust their lives. As for guilt please just open your inner window and toss it out! I have come to the conclusion that if people can not accept who you ARE instead of making you feel guilty for who you are not they don't deserve a place in my life or yours!!!! It took me quite a while to come to that point, and I believe in the long run it caused me alot more pain. I have also been diagnosed with Polymyalgie? I have not done much research on that, but just figure FM is enough of a pain in the keester (pun intended) to deal with. I have found humor helps alot, especially when the Fibro is kicking my hinney, I have a good support system even though they don't entirely understand. I know it is hard especially with 3 children, but please don't think of FM as a life sentence, instead as a bump in the road, medical research has come a long way and made many strides since I had my inital diagnosis. For a long time Physicians would label you neurotic or a hypocondriach if you complained of something they couldn't put their finger on or didn't show up in a x-ray, but now if you have a good Dr they are more accepting of the fact that not everything can be seen through a microcope or on an x-ray. If you would like someone to complain to, a sholder to cry on or just to vent I would be honored to take on that job, I have big ears and can put them to good use. I sincerely wish you a wonderful day X365.
 
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rickie3grandsons replied to limpylizard's response:
it is good that we can talk to others that have such pain only outsiders callit complaining
 
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rickie3grandsons responded:
I can give you my email I have 4sons and 3 grandsons I have not been able to work now for 5 yrs and I feel OUR RETIREMENT plans have been destored....I worked in a factory for 25 yrs and it closed and went to Mexico and then got a job that I loved in a big retail store was manager there was a lot of stress and you know .....well I just went down hill and it was terrible they sent me to specialist (waited 8 months) and he told me that I have fybro really bad case and has had it for a long time I have a very high pain tolerance and some days I cannot even get out of bed it is horrible so .....I was on Lyica for 3-4 years 12 pills a day of 50mg's and I think I was just ammune to i...t it was my last straw....well tylenol 3 with codeine and waiting for the DR.to fill out papers for medical marijuana I need something for the pain somedays it is so bad I could just do myself in I take vit d and 3 Omega 3 cap's.. vit's and cymbalta . if I had one wish it would not be to win the lotto it would be not to have fybro and have our retirement dreams come true.and to enjoy our grandchildren more we are only 54 and 56 yrs old so we are still very young please write back sarah_robinson45@yahoo.com


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