Fibromyalgia Support Group

Hi everyone

I don't post much! Pretty much never really. A few posts when.I first joined. I can't post to help anyone else anyway!! Can't help myself, I don't want this to be a sob story or me looking for sympathy.

I just don't get how everyone can cope so long with pain. Fibro or not pain is pain.

I've developed more pains than I can keep track of now. I get so panicky at night now. I know I won't sleep! I can only lay on my right side but today I've got a new pain in my right shoulder blade! I wake crying if I do sleep usually drug induced.

I don't go to docs anymore just in case they think 'here she goes again"

I have so much to live for,great business that I run,horses, kids, fab husband but I can't take this anymore, I've taken to wine and my meds just to knock me out.

How on earth do you all cope

Suzanne xxxxx

I wish I had some advice on that, but lately I've been feeling the same way and very depressed about it. The pain just never lets up!!!!!!!! Its either burning stabbing headache mouthache or feeling so weak you don't know what to do. i'm sorry but this sucks. I hate feeling like this and enjoying nothing. Sorry you caught me on a really bad day. But maybe tommorrow will be better? I just usually try looking for answers or studies something that might help. Hope you have a better day tommorrow to!

Suziees, I understand as well as everyone in this group about the pains you are going through. We all cope in different ways from day to day since no one day is the same as any other for us. I find myself when I am in a "funk" thinking of my kids and how wonderful they all are, and about how thoughtful and caring my husband has been through this whole thing. I am very thankful for all of them for sticking around and putting up with me not being like I used to be anymore. You have to hang in there until one day they find a "cure" or at least until they can find where all this is caused from...Talk to us, talk to family, talk to friends, do some more research on Fibro...you may be surprised on what you find. For example, I had a bad day at my rheumy yesterday and I found myself reading about Cipro and the link between Fibro and the antibiotic...then my hubby found a link between Fibro and Flouride use...so then I began thinking about how much flouride is in everything we use or consume and about how much I have consumed throughout the years....all of this took my mind off how much pain I was in and got me thinking of what else I can find out about this syndrome...there is so much we don't yet know about this...I guess all I am saying is try to occupy your mind with something else, retrain your brain to stay away from pain...lol...and remember some days are good, and its those you have to take advantage of when you have them take care {hugs}

Suzanne, maybe you are between rounds. Meaning, sometimes I really cannot cope very well. This past year, I swore off doctors except for my psychiatrist. And even this meds are a blessing, but an imperfect one. Today, I don't know why, I called my GP and am steeling myself for beginning another round of talking, asking, of who knows what possible 'insult' to my intelligence. Then again, I am hoping that this time I will ask for and receive some better care.

I don't have horses. They are lovely animals and take so much work. I've been around them. The care they need has to be delivered like clockwork. I have chickens, a child, and sometimes I think it stinks that it's like I've fallen off the world somehow. Like how'd that happen to me? Some days I don't make it out to the hen house. Some days I just collect eggs and look at all I should be doing. But I like to go out and watch them, those silly birds. There is still pleasure in that.

I am very sorry you are feeling at such a low point and with so many responsibilities and things you want to be able to do. You are brave to post so honestly, IMO. Hang in there, okay? I bet you will find that strength again very soon.

Hang in there! It is frustrating..... I constantly tell myself tomorrow will be better... pray, pray, and pray some more.... I also remind myself God won't give us more than we can handle, even though it makes us wonder sometimes.... don't blow off your doc because of what they might think... my husband and I both felt that way when I was bedridden for several months and he was having to take me in 2x a week... as I improved somewhat the doc actually praised us for 'hanging in there' and not giving up.... sometimes attempting to occupy the mind helps me also.. my brain seems to not function properly a lot of the time but at least by focusing energy on something else the pain and frustration doesn't consume me....

I was also hearing about the flouride poisoning... am attempting to remove it from water, toothpaste etc to see if it makes a difference... and I had always blown that off because up until the last few years I was on well water... guess what... even well water can contain flouride... between all of us, we will find a solution long before the docs do

suziees,

I know you are hurting very badly, and I also know that when things are that bad, you can't/don't want to do anything. I'm wondering what kinds of meds that you are on, and how long you have had fibro...I agree that you should not give up on your dr if in fact he/she is trying to help you just because of what they will think. Are you seeing a rheumy or just a regular dr? If you are not getting any help, you may want to find a new dr but stopping going because of their thoughts is not gonna help you at all. Besides that, if you quit going you will eventually run out of meds. Help me out with some more info, and maybe there are some suggestions we may have. Don't worry about sounding like a "sob story" we all have them, and this is where we tell them, because these ppl understand. You are in my thoughts and prayers....HUGS Look forward to hearing from you...

I've always been in pain. Every memory I have I was in pain somewhere. Even the good memories. Now though, I'm also at my breaking point and so fatigued that I'm finding it difficult to do even the limited things I used to do. My arthritis is kicking in full force now that the weather is changing so I think that has something to do with it. I can't do the things I used to do to distract myself from the pain. Those little coping mechanisms you have but don't realize, I can't do those either. However, I do know that despite my apparent new level of pain(and while I may be flaring from the arthritis and FM-not positive yet, but any flare leaves me with a heightened pain level from before then), I will find new mechanisms, new distractions. Of course I'm still doing all the old OTC relief tricks(epsom salt, heating pad, etc), but now I'm actively trying to find those new things.

I can't fully give in because I have two kids, a family, my husband, that need me so I force myself to keep going. I keep looking, searching for new things. My daughter has several illnesses that will morph into the all consuming pain I have now. She already is in pain but we are controlling it now. That keeps me looking for those things that ease things for me because one day she'll need to know those things. It'll give her a leg up on this whole thing.

Some things I noticed in your post I wanted to address. As for the drs, I got frustrated the other day and just decided to take a break. Well, for the past few days I've felt like my legs, arms, rib cage, etc was going to explode. I decided to try a new dr that I've heard good things about from a mother of someone with a different disease I have. I've found a lot of crappy doctors, but I've also found a few good ones. It's a lot of trouble, but those good ones are worth finding. You also mentioned feeling panic at night. While it won't specifically help pain, you might want to try some breathing techniques or some visualization techniques to help get the panic level down. Getting better sleep would have some effect on the pain. Another thing you mentioned was "taking to wine". I'm neither for or against drinking alcohol. It's a personal choice. Just don't let it become a crutch. Also of note is that with FM can come alcohol intolerance. Meaning that even though you could drink before, even one glass is too much(or two or three or whatever the limit becomes) and others can no longer handle it at all. It also actually disrupts sleep patterns. It may make you drowsy, but overnight the sleep patterns(alpha, REM, etc) become altered leading to poor sleep. Alcohol also acts as an inflammatory which can increase pain. I personally can't drink anymore. Not because I get drunk too quick, but because on the rare occasion that I actually do drink(even one glass), I wake up in double or triple the pain the next day. It makes me so much worse. Just a few thoughts. Take them with a grain of salt, but maybe something in there will help.

Suzanne you asked how we all cope,well I can't answer for everyone else just for me. I have days sometimes several days that I also don't feel like I can or even that I want to go on. I wake up in pain it takes so long to get dressed, and then hobble to the bathroom, in a cold house cuz we have no heat, to use a pitcher and bowl to wash and brush my teeth as we also have no running water. Then I look down at the little doggy pawing at my leg and pick him and smile as he licks my face and whines with joy to see mama. Then I go out and get coffee and say good morning to at least 4 people who are glad to see me up and hobbling into the kitchen. I notice the sun shining on the apples we got from the food bank that are ripening in the window, and think my daughter and I will be able to make apple crumb with those today, hopefully she's feeling up to it today too( yes she also has fibro ). I spend the next few hours on my computer answering my emails and posting on here, maybe taking a nap, talking with my family and those who share our property so we don't all end up living on the street. That's how I spend my days most of the time, that's how I cope with the pain is by focusing on those wonderful moments, and those who love me and who I love. I know life and the pain we live in can be overwhelming but try focusing on the little bright beautiful moments instead of the overwhelming darkness. You have fund a wonderful group of people who are here for you to talk to and who will listen to you please feel free to PM me or post here any time dear. Big hugs and bowls of love.

Hi Suzanne,

I'm new here, so I am not sure if what I say or do has already been said or done, but there are times that I weep in the shower. I don't have a husband or even a boyfriend, which sometimes is a blessing in disguise. I'm not sure I could cope with the guilt of not being able to participate in life at their pace. Always slowing them down. (I tend to date musicians and really motivated guys)

So one day I decided I just had to get out of the way. So my point is - don't dump your support system, but rather create a routines that make you feel better. I carve out whatever it takes to make myself feel better. For me, it was shedding the commitments that were going nowhere. And I knew it. I had to take care of myself, in my fashion, my way, no questions, my terms.

I've learned to made friends with the early morning. I wake up at 2am or 3am and have to take another pain pill and while I wait for it to kick in, I get on Farmville or do some reading - and if my eyes are acting up (wiggling back and forth - which means I am really too exhausted, then I know I did way too much. I take my pain medication, go out to the front room where it is cooler and the futon is a little more supportive and prop myself with pillows all around until I fell supported, turn off the lights or leave on the string lights and listen to my iPod with playlists that make me relax with music I not only love, I adore it.

I have a toy bunny rabbit. His name is Wayne the Rabbit. He is my buddy. I know he is my replacement for not having children, I know it is a little strange to have a stuffed animal keep me comfort, but at least he doesn't talk back. And I have asked quite a few women who out right admit to having a "stuffy" some are single and some are married. I was thrilled! What a hoot!

Wayne the Rabbit has friends, camping equipment, a tiny sample tent, small musical instruments, small food (erasers) and many of my friends, keep an eye open for tiny things for "Rabbit Nation." It is amazing how many musicians, office co-workers, friends and family, have totally jumped on the band wagon. (I'll upload some photos soon)

So those are my preoccupations, the creative, for me, gives me a reprieve from the pain. Not all the way, but puts it on the back burner for awhile, and eventually, I fall back to sleep for a few more hours.

I have tried Lyrica, Cymbalta both = dark dark dark thoughts, soooo we went off those in a hurry. I knew my despondent feelings were the medication and not me. I know me. That was not me. Kenalog shot in the rear. Good for a few months, but ended up with a rebound worse then before. (when I reduced the Cymbalta, for example, the smallest amount was 20mg and very few people can make that last jump off of it (I expect the pharma companies know this and until the patent is up and it can go generic the smallest amount will remain at 20 - and I couldn't taper off that last 20mg without horrible withdrawal - nerve pain that was unbelievable. So I went to the health food store and got blank capsules and opened up the dumb Cymbalta capsules and counted the beads out. Unfortunately the electromagnet properties made this task difficult as the little beads scooted all over the plate. It took me 6 weeks, but I did it. I didn't take just the word of the doctor and the advertisements. Actually any study I read, I check who funded the study. Was it a pharma company? The results may be skewed in their favor.

Now I have leveled off with a good regimin of different meds that seem to alleviate the pain and other discomforts associated with this condition. I have bad days and some good days here and there.

I don't know if any of this resonates with you, but I no longer buy scratchy clothes, I cut all the tags out of my shirts or pants, I put pads in all my shoes, even my flip flops.

I lay quietly with myself and one distraction only, more than that seems to be too much stimuli.

I hope something in my note helps. I truly feel for you. I still am in that spot from time to time. But knowing it is not always going to be that bad helps, and use whatever I have to, to protect, comfort, and support myself.

Do something special for yourself, indulge in something soft and cuddly.

Suzanne,

I feel so bad for you, you have to try to snap out of this, there is always something worth living for in our lives, and like you said ou have great hubby, business, family so please dont give up. It alot to do with the change in weather that we are having also that does not help our pain level these days. Because I've been in serious pain for about 2 weeks, migraines on top of the rest of the pains and please try to see you doc you have the right to be treated your the patient and demand that you be heard dont be weak, we deserve to have the same attention to our fibro concerns as if we had any other sickness, we did'nt make this desease up we did nt ask to be in such terrible, sometimes unbearable pain and we deserve to be treated for it to our doctors best knowledge, so please dont give up your life is just as important as anyone else's so stay strong. Lots of hugs from Linda