Fibro Challenges Online Support Group

Hi guys, It's Dusty Amanda AKA shezcountry yet again....I cannot make up my mind if all the medications I'm taking are working...I seem to be even more jumpy and my back is excruciating...It hurts from morning to morning. I cannot get relief from my Lorcets, I cannot get relief from rest, matter of fact I seem to hurt worse if I sleep. WTH is that about? I cannot get up in the mornings feeling good anymore, it's becoming increasingly worse over the weeks. I'm scared that my incision where I just had 2 hernia repairs has now ruptured either one of the hernias or is scar tissue that will always feel this way. I'm soooo scared of back surgery, so I procrastinate on going back to have more done as in MRI's and X-rays. I actually made the call to my Rheumatologist and they have yet to call me back on an appointment. I'm just in a bad place right now. '

My daughter is almost 10 months now and I cannot put her down or she screams bloody hell, I cannot keep my 3 year old from jumpin all over me. I am just going nuts here. If I use my back to bend, I want to cry and if I use my stomach to pull up I cry...Is there any end to this and can I live without pain meds. I feel like a horrible mother again.

I just had a friend lose her 2 1/2 month old son to CHD, he was 2nd in line for a heart when he went into cardiac arrest and had to have the surgery....heartbreaking, then My Baby girl had to be hospitalized with 103.2 fever and dehydration in a matter of hours, my son has been with my Mom since then and will be at Deer Camp with my Dad all week and I'm losing a battle with keeping my dogs, that even as much as I bitch about them, they are family now and I've killed myself working with them so they could live inside with each of my kids...NOW the docs say that they have to go...WTH? How can allergies make your 10 month old run 103.2 fever, listless and almost unresponsive......She had 2 ear infections prior to that, but when she first was in the ER they were cleared up..So, I can see that sinus problems could cause her to have ear infections, makes sense, but if they were fine in the ER, then how can she be that sick. We stayed overnight where a doctor told me basically that I was a dumbass, because I could not see where it is NORMAL for your 10 mo old to run 103.2 and be unresponsive. I had to pull her clothes off of her and get into a tepid bath to wake her. I was looking horrible that day and cared less what I looked like, just that my kid was ok, so I guess he believed that because of my appearance that I was an Idiot. I don't buy clothes or things for myself, I rarely venture out anymore...too much to do here...I hate when you are judged by someone who put their pants on that morning after a shower and felt as if the world was right. I'm so stressed that my neck muscles are so tight at this very moment my hands are shaking trying to type...I haven't been able to sleep, have thoughts rushing thru my mind. Plus, my pain is made even worse by being alone.. BUT the most interesting thing in all this, MY HUSBAND who does not understand my pain, told me I needed my friends on here. Sad to say though at this hour....none of the one's I've connected with are on. I haven't been on in a bit because of all the other stuff that has happened. I just wanna crawl under a rock, smoke cigarettes and slowly suffer and hope no one finds me....I'm almost to my end of the rope and it's bad guys.....HELP!!!!! I haven't been on my pain meds in 2 days...Going to get them tomorrow to see if that will help, since going thru a 2 day break. please send me a suggestion...HOT showers/baths don't work.....I'm at a loss.... I can say at this very moment, I could care less about myself, only that my kids are well cared for, maybe they do deserve a better mom...One that can explain why and where they hurt when asked. One that could always get in floor and play even in a bad day. One that always loves no matter the hurt....sometimes I wonder why i had them, but then they do something so incredible to or for themselves or me and it is clear how much I love and want them, then on days like this, I just wish i had a nanny...Is that truth the most horrid thing that a mother could say...OMG....I cannot believe I just admitted that I don't always wanna be with my kids...I need a break. A HUGE LONG BREAK, should I even have them, do I deserve their love...NO!!!!!!!!!!!!!!!!!!!!

Hey Sweetheart - - - I am here!!

I live in South Africa - so I am on a different time clock!

Oh baby girl, I soooo wish that I had a magic wand that I could just wave and make everything better for you! I would use it on myself as well. I am also in the most ghastly place right now!

Firstly - my internet keeps crashing so I hope that I can get this to you. Secondly - please believe me when I say that I really do understand how you are feeling right now.

Dusty, you really need to stop beating yourself up. (Says me - the expert at it) You know what our problem is? We care too much and love too deeply. IF you were a bad mother you would not for one second question how you are feeling. You are NOT a bad mother darling. You are a wonderful, caring, loving mother who wants the very best for her precious children.

Angel, I can guarantee you - - - there is not a single mother on this entire planet that does not feel overwhelmed at times. AND most of those are woman who feel healthy!!!!

You are having a hard time just getting yourself through the day - - that is a job on its own. You have a toddler - - (so cute at that age - - - BUT soooo exhausting) that is a job on its own. You have a 10 month old - that is a job on its own. And then we will just throw in all the other little duties you have - like being a wife - a housekeeper - a nanny - a nurse - a cook - etc. etc. etc. I am exhausted just typing this!!

Darling pain is soooo debilitating. It saps you. I am glad you are getting pain pills tomorrow. I don't have any secret formula for feeling better (I soooooo wish I did!) but please please talk to your doctor. Are you on anything for depression?

Well baby shoes - - - - I have been of absolutely NO practical help whatsoever. But please know that I am sending you lots and lots of love.

Please remember - - YOU ARE A WONDERFUL MOTHER! You are just dealing with an awful lot right now!!!!!!

Zillions of gentle hugs precious one.

Faerie

Thank you soooo much, but I honestly do not feel like I should be here...It is almost like God is trying to kick me in the ass for all the wrong that I've done. I am on antidepressants, anti-psychotics and various other crap, they work for a while, but the pain, it's the worst of it...I just can't take this body anymore...I soooo appreciate your words..You made me finally cry and just let it out. My husband thinks that I'm nuts, I can't make him understand that even though he does do alot around here, that at this very moment...I'm fragile...not even gonna lie about it.

I feel as if my mid back is broken, like it hanging on by a thread....

When i get up in the morning..I will put my feet on the floor and almost give way to the stinging and numbness. Then my wrists will begin and then as soon as I have to start picking up my baby girl, MY BACK WANTS TO CAVE IN...It's like fighting a losing battle everyday....

I was thinking no one would talk to me tonight, Thanks doll!

Oh I hear you!!!!

Don't you sometimes wish you could put yourself down somewhere - climb out of yourself and just get on with things? I have often said that the only reason that I don't run away is because I have to take me with me!!! UGH!!

Apart from all the other yucks I deal with my back is also really really bad. I have to do some heavy duty stuff every single day - and every single day I don't think I will get through it - - - but we do - somehow! Yay - gold star for us!

Dusty - is there anyway you can make your bed a play place for your little ones? Somewhere that you are comfortable and your three yr old is kept busy. Book time - or activity that will keep him occupied?

Got to go now angel - the heavy duty stuff is waiting.

Take care sweetness.

Gentle hugs and much love

Faerie

Dusty Amanda ~ BIG HUGE HUGS!

I so have had days, weeks & seemingly months like that. It does get better. I agree if you were a bad mother you wouldn't care!

My advice is push with your Drs for more pain relief. I am an advocate of being a proactive patient and pushing if I must to get relief.

My kids are 8, 12 and 21 now. But 6-7 years ago I was newly divorced and single had just moved 1300 miles and in a bad fms/cfs phase. My house was often a shambles around me and I felt like I was destroying my kids. Today ~ they are compassionate, well behaved kids.

It was during that time I learned to respect my limits, not push them and that in the end the work always got done anyway. Whether today or a week from today. I also decided that if anyone (primarily my family) didnt like my terms that they were more than welcome to pitch in and lend a helping hand instead of b*tchin at me. They left me alone... not a bad thing!

I take Zanaflex generic is Tizanidine at night (has some sedative properties) it helps combat that morning stiffness. I have a cervical injury (bulging disc) with radipothy into my rt arm and a lower lumbar injury. I also had facet injections in 2007/08 I am not pain free but they helped. I have also been known to utilize trigger point injections.

Pain meds, I do not use anything but tramadol nowadays but did take opiates for a spell, they worked great...If you take them daily, once your body becomes dependent on them a few days without them and pain can become worse.

Something else I have learned (hard to do too, admittedly) is look at the pie piece by piece and not as a whole. If all you do today is meet your kids basic need for love then you have done a great job!!

Wishing you a better brighter day!

Peace & Hugs ~ Cat

Hello. I am Thelword, and I read your recent diary post. I responded to you on that, so check it out.

T

Hello Shez...

Oh, my dear! YOu are having a tough time and you know it! Now to get something done about it...

First of all - is there anyone you can have babysit your darling little one while you get some sleep?

Even if someone will just come to the house would be better than nothing, even if it's only for a couple of hours a day.

As for your husband... he probably just doesn't know what to do for you... Men are not all that good when their spouses get sick, especially if they can't see she is on crutches or something... but if you two can really have a conversation about what it's like to feel this way - many conversations - some of your pain will probably trickle in and he will understand more.

Most importantly... this is way too much pain... your dr needs to know - bug him if you have to - what is going on.

My experience with dr's has been that they just don't want to see anyone that has fibro attached to their forehead because there isn't much they can do - but, if you push it...just a little... they will probably either give you something else for it, or find a specialist to send you to.

I do hope all this body pain is not must universally accepted as fibro because it might not be. How far have you been checked on this?

Also - have you had your allergies checked lately? Do you have any drug allergies that you know of?

The best person to talk to about the drugs you are taking is your friendly neighbourhood pharmacist. He knows what drugs work with what... also he should be giving you a sheet telling you what side-effects each of the drugs you are taking have on the body. We get one of these everytime we try a new drug.

My heart goes out to you... fibro is hard enough without having young ones around that don't understand why Mommy doesn't want to play any more...

Best wishes and gentle hugs,

TEMA

Thanks to all of you for answering my definite screaming and kicking plea for help...I just hurt so much and then when it stops a moment I feel bad for not doing the things that I need to be doing everyday..I just can't stand my old ass body. It's ridiculous to feel that helpless and out of control. Sometimes I know that being in the house with a million things to do is what makes me worse because of the stress and anxiety. I can't stand that my house about 2 inches of dust and dog hair has begun to run rampant thru out the hardwood areas. I can go out and do things sometimes and know that the Sun and Vitamin D has helped me and I love to take one kid at a time out and just go to a store like Wal-mart at 2 in the morning. I allow my kids to stay up with me at their age right now because if I don't I cannot get any rest during the day. I still haven't gotten any sldeep, because I want to take a mew time and read some or research more on myself, It just seems to a never ending cycle...ugh...Thanks all, it is helpful just to have you ALL SAY...you ARE A good mom! THANKS!!!!DUSTY AMANDA

Hi

One minute at a time, if that is the way it has to be. Like others have told you. Forget everything else but feeding the kids, something very easy, you're not going to feel this bad forever, so they will survive. Kids really don't care, as long as they aren't hungry. Do you have to lift the baby? She should be walking or at least crawling. Have her crawl up beside you on the couch to get fed. Needs a diaper change, have diapers down on the floor somewhere so she can come to you to get her diaper changed. Feed yourself and sleep, you have to get some deep sleep or you are not going feel good in the morning. And hubby can find his own food. Mine fixes his own food almost 6 out of 7 nights a week. Your hubby is an adult, he can take care of himself. If you guys need clothes washed, hubby is out of clothes too, so he can wash them. Out of dishes, hubby can wash them. I got to the point I could not do dishes, so we use paper plates, saucers, and bowls. Only $2.50-$4 dollors for about 50. Throw away and hubby only has silverware to wash.

There are some really good letters on here to "normals and hubbies". Just type normals in the search box at the top of the page. Ask him please to read it so he will understand where you are coming from. With the hernias, fairly new baby, worrying about back surgery, you have enough pain. HE has just got to stand up and take some of the duties of the house over. Explain to him, it might not be forever, but right now, you need a week off.

Does he have vacation time? Do your parents or relatives live close? Ask anyone for help. Church people?

Like others have told you, get those pain meds. By now you probably have them. Take them as prescribed and if that isn't enough, call the dr and see if you can take more or get something stronger. Don't miss a dose. That lets the pain come back and the pain will be harder to get under control that time. Always stay ahead of the pain. You might not have to take that many meds for long but now you need them.

Sorry honey, but it is time for Mom to start asking for help from those around you!

Wish I was there. Can't help too much cause of my pain, but could help some.

Gentle hugs,

Debbie

Shez,

I want you to know you are not alone. Having chronic pain and children are a tough mix. Do you have any neighbors, relatives, friends or people from church who could come over and watch the kids for a while, or better yet take them out for a while? Take a nice warm bath with suds and candles and forget everything that is invading your head at one time. I am a good one for letting everything build up around me at once and feel overwhelmed by what needs to be done. In the end I think, will it matter if the dishes don't get done right now? Does it really matter if their is dust bunnies? I kind of think of them as fluffy pets that are low maintenance. I am not the best housekeeper, I will admit. It is very hard on my body to do so, but I had a wonderful surprise in some friends I used to go to church with. They understood my plite and came over to clean! God bless them!!! I felt guilty for not being able to do it myself, I am a master of guilt, but they reminded me if I don't let them, I will be taking away their chance to do something nice for another person. Well, if you put it that way....

I found it helpful to lay on the couch, put in a movie for the kids, have everything I need nearby including toys and a covered bottle of ice water for me. We had a few snacks with us and the kids could play by me and I could rest. I also do this on the bed. When the kids were older, I would bring a game and they would lay on my bed and play a game with me. Now, my daughter will bring her book, I will have mine and we will read. These times have actually bonded us and they are some great memories.

Talk to your husband and explain to him your need for rest. If you don't sleep at night, your pain will be worse during the day and it is a vicious cycle. Remember, you are a good mom. Just the fact that you are concerned for your children's well-being says so. Be kind to yourself and it is ok to admit we can't do it all. We want to be super-mom, but our bodies won't let us. I hope your doctor can get you better pain control or guide you to someone who can. Things are so much easier to manage if pain isn't screaming at you constantly. My prayers are with you ~ be gentle with yourself.