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| sweater - Jan 19th, 2010 2:26 PM | |
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I am feeling exactly the same as you. i cant remember a day without pain it's driving me crazy. like you i have a fab husband, but those early hours in the morning when thats all you can think about is so much pain & other symptoms, i feel so isolated & alone. I have one child she,s 7, SHE IS REASON I GO ON. I really wish that i could do more for her & with her. like you said its the simple things in life you just want to do with them.i only found this site last night & it,s helping me already just to know i,m not the only one suffering like this you are out there & it,s also nice to know that i can get things off my chest & people will understand what i am going through. my name is sandra i am 38 & live in the rhondda valleys south wales uk.hope to hear from you soon xx | |
| stephanyb11 - Jan 19th, 2010 3:33 PM | |
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hi sandra, thank you so much for responding...i am also new to this site, i just found it late last week, and like u it is so reassureing that there are ppl that understand what im going through!!! i hate that so many ppl have to suffer like i do!!! for the longest time i felt like i must have done something wrong sometime in my lifetime and i was being punished with this illness...no i know that simply is not true!!! i understand that everything happens for a reason and i just continue to tell myself that everyday, many times a day!! but enough of my rambling..i will pray for you strength to get through this!! i have been having a real bad flare for almost a month now, and i blame it on the weather..so i am hoping once spring rolls around i will start feeling better...take care!! | |
| sweater - Jan 19th, 2010 6:06 PM | |
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hi steph (hope it,s ok to call you this for short) thanks for writing back to me i really appreciate it.I thought exactly the same thing i always thought i was being punished for something aswell. there are so many symptoms it,s cruel ain,t it. at the moment i,m really not well, severe headaches, shoulder ,neck ,backpain, depression,chronic fatigue and stomach problems. i am so glad i have found someone to talk to. did anything you can think of start your fibro? what kind of symptons do u get? about how many good days would u say u have in a month? i know i get those terrible sweats do you? also awful mind fog i get too. hope you dont mind me asking all these questions its just that i never get to ask anybody that suffers like this. best wishes roll on spring weather. speak to you soon. your new fibro friend sandra xxxx | |
| stephanyb11 - Jan 19th, 2010 7:25 PM | |
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sandra, it is fine for you to call me steph!!! all the symptoms that you have..I HAVE ALSO...i have been having migraines to the extent that i have to go to the dr. and get shots. the back and leg pains are horrible!!! i also get this tightening and feeling like i constantly have a sunburn all over my body...some days i cant walk for i am so weak...it seems like the days i dont have extreme pain i am so weak i cant hardly move...i have horrible sweats also..they seem to come more at night time...i think mine just runs in the family...my grandmother has it and my mom and 6 of her sisters have it also and all of the sisters that have it and have daughters they have it also...it is just a wicked family curse that needs to come to a stop!! i have 2 daughters and i pray that it does not continue on to them!!! take care we will talk soon...Steph | |
| axxie - Jan 22nd, 2010 10:59 PM | |
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I feel for you and I sometimes have the same feelings. It's always in the wee hours of the morning that we feel worst. Seem the pain is worst due to being overtired and in pain. | |
| stephanyb11 - Jan 26th, 2010 4:56 PM | |
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thank you for your input!! i have been trying so hard to keep moving...it seems like the more i move the more i hurt!! i am absolutely miserable!! i am having a very bad day!! my emotions are running wild today, all i want is to be able to get up in the mornings to fix my little girl's hair, but my hand hurt to bad, i want to go play at the park with them, but im so weak i can't hardly walk..my doc started me on savella last wed. and NO RELIEF!! i called today to ask if there is something else i can do..they upped my muscle relaxers (baclofen) and gave me a higher dose of vicodin 7.5/750..i'm sorry to whine to you all but i know that each and everyone of you understand my misery!!! Thank you all for being such understanding ppl!! | |
| ptalana - Jan 26th, 2010 6:13 PM | |
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Hi Steph, I'm so sorry that you're going thru such a rough patch. I hope you get the much needed relief from the change in your meds. | |
| stephanyb11 - Jan 27th, 2010 1:30 AM | |
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hi patty, | |
| Bretongirl - Feb 3rd, 2010 4:12 AM | |
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It is 4:30 in the morning and I haven't been to sleep yet and I am probably not going to get any tonight. I just found this website and although it is heartbreaking to read how others are suffering. It does provide some comfort knowing that I am not alone. I think that late at night when we are alone that things seem the bleakest - we have no one to push for or pretend for - we are alone with the pain and we can't hide it from ourselves so it overwhelms us. That moment of giving in can feel like giving up which allows the fear that we all live with to rise up against us - we can drown in that fear. It weighs us down with stress and depression. We all wonder what tomorrow or next week or next year will bring. Will the pain get worse, what if I can't take care of my family, will I ever drive again, will I ever work again, does my husband resent me, am I still attractive, will I end up alone - it goes on and on and around and around. There are few good questions or answers at this time of day. Tomorrow is coming whether I like it or not and it will be what it is meant to be. I can only do what I can do - I will seek and accept help from my medical team and my family - I will continue to research this disease and educate myself - I will reach out to others so that we can share and support each other. I will keep going - Fibro and CMP are fearsome enemies but I am still in this fight. So are you Stephany - you will get through this patch of darkness. Focus on what you can do - start new activities - board games, movies, find a book that they want to read - take turns reading to each other. I used to watch my sons play video games - I'd ask questions, cheer them on, etc. On days my hands were too sore to take a turn - I could still spend time with them. When I had a good day I'd take a turn and we could share a laugh at how terrible I was. But I was involved in something that was important to them. After all your time and your love are really what is important. Be honest with your children - depending on their age explain your condition and what you are feeling in appropriate terms - children are so much braver than we give them credit for - let them in. They might surprise you - give them the chance. I wish you better days and restful nights. I am going to watch the sunrise. | |
| GeorgiaZ - Feb 13th, 2010 12:54 PM | |
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I am so upset also that I was just diagnosed with this horrible debilitating crap that I am just mad. It has been a long road to a diagnosis with doctors, well except the new pcp, because everyone blamed how I felt on the fact that I am over weight and dismissed my pain. My family has just figured out how much pain I am in within the past 2 weeks after thinking I was just 'lazy'. I hate that clothes hurt, I hate that most of the time it hurts when my 13 year old hugs me, I hate that my finger nails feel like daggers in my fingers, I hate that my skin feel like a mixture of the flu and a sunburn, I hate that a shower hurts, and I hate well all of it. I love that I am loved and cared about, I am glad that someone who I have seen 2x cared enough to take the time to listen, I love that I have a name for what I have after so long even if it is this. I hate wanting to sleep constantly, and feel to weak to do the things I have always done and want to do, including taking a long stroll in the part. My son is frustrated because he knows how I feel, and is upset cause he can't do anything for me.... I am lucky to have a family that already knows this disability since my uncle (thru mariage) has it severly. Thank you for listening I was diagnosed on Wens | |
| solanadelfina - Feb 13th, 2010 8:21 PM | |
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Augh, LONG day today. Saturday in retail always sucks, then double that for coupons and double again for before a holiday. Fibro + plantar fasciitis + cold + cycle + migraine = not happy. Then I sliced my finger on a book, went to get a band aid and ended up knocking the box and the wrap into the toilet. | |
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