Fibromyalgia

Careful_with_that_Axe

I'm sorry to hear that you're scared how you'll manage BZ. I hope that other with ickle ones here can help put your mind at rest.
My guess would be that both you and the kids adapt?

bigzippy

Careful_with_that_Axe wrote: »

p.s. I thought the thread would be empty and I only sneaked in to put whoopie cushions on S/e, BZ and Raeh's chairs for when they come back

Thanks very much Careful. I sent back a water balloon in repayment.

I sent OH off with MIL2B to do the Christmas food shopping while I stayed in bed snoozing... When I did get up I stood on an upturned (so I could hang it on the side of a door -but it had fallen onto the floor :rolleyes:) coathanger wire bit. When I got over the shock and annoyance of it (like standing on a plug OUCH) I sat on the end of the bed to have a look at my heel and was nearly sick! _pale_ I was fully expecting a little dink in the rough skin on my heel...but oh no, there was a v shaped flap of skin gouged out, exposing the flesh underneath. Nasty! And because the skin on your heel is tougher, it had kind of almost dried in a curled up pointy way and I had to make it all wet to get it back into the wound, iyswim. Might be TMI but I felt the need to share It's still painful and I've dressed it etc, but I can't put my heel down.
Then to add to my woes OH came to pick me up and told me that the car's tyre was flat. Grumble grumble. Kwif fit couldn't find a hole or anything, which would be great as it was a nearly new tyre on my nearly new (to me) car, but now I don't trust it.

They never did any food shopping either *sigh*. Wonder who'll end up doing that... :rolleyes:

Still trying to blag Sister that she really does want to lend me their Wii for over Christmas, but apparently I have to also blag BIL and nephew into releasing it... :think:

bigzippy

Careful_with_that_Axe wrote: »

I'm sorry to hear that you're scared how you'll manage BZ. I hope that other with ickle ones here can help put your mind at rest.
My guess would be that both you and the kids adapt?

It's not the pain of Fibro that's worrying me so much (cos I'm HARD ) it's the completely knackered days that scare me. "Normal" parents look absolutely exhausted so how on earth would I manage? I'm sure we'd make it work, because we'd have to basically, but it does worry me tbh - esp on a bad/low day. The theory goes that you never miss what you've never had, and people which much worse conditions that me manage, so I'm guessing me and the baby(s) would adapt with each other...?

pamaris

bigzippy wrote: »

Hi Code-a-holic. :wave: Welcome. And congratulations! :j
I'm intrigued, as I'll be getting married (quiet guys ) in September and OH is using scary phrases like "this'll be no good when we have kids" in a less than for off sense :eek: I really want kids but I'm scared, to put it bluntly. I've read on some threads that Fibro symtoms can decrease/virtually disappear during the pregnancy and sometimes into the breast feeding...have you found this at all? The other thing I'm worried about is keeping up with kids while I'm so knackered and weak. So I guess my question really is: how do you manage?

Hi BZ and Code-a-holic- I can answer this one!

I am a 32 yo mother of a 7 year old little lady and a 4 year old boy. Here is how I manage.

First of all, I absolutely demand a proper lie-in every Saturday. My hubby obliges because he may receive perks on Friday night that he considers more important than a lie-in! Anyway, me getting at least 1 lie-in a week is essential to how I will feel the rest of the week. When you have kids, you have to negotiate all sorts of things like this with your OH.

Also, one of the things I absorbed from my own mother's parenting was that it is absolutely essential for a child's confidence and well-being to teach them to be independent. I let my kids help me and I teach them to do things on their own. They are really capable of quite a lot. I would definitely recommend having a 3 year age difference... when I had my son, I think my little girl fetched nearly every nappy for about 12 months! Plus, she was out of nappies, so that helped. Also, with regard to teaching independence... I am very cuddly with my kids but I nipped any clingy-ness right in the bud at a very young age. I also found that when they were infants, a 100% consistent schedule of wake-eat-play-sleep caused them to sleep through the night very early (around 6-8 weeks-- the important part is eating immediately upon waking, and never, ever feeding to sleep except in the middle of the night). I also bottle-fed my babies so that my husband could take part in the feedings (especially at night!).

The keys to my personal sanity and health are that my husband helps me so much with the things that I just can't manage, and that I openly discuss what is going on with my kids. I don't get any empathy from them yet, but I do tell them "I need to sit down for 15 minutes and I can't talk". So I gather myself at that time.

So... on this subject, I would say.... 1- Enlist support wherever and whenever you can. 2- Teach your kids to be independent. 3- Be assertive about your needs and don't be bullied into anything you don't feel is good for you (for example, I did give breastfeeding a good go and it absolutely was not good for my health or my sanity).

Broadening the topic, I think it is also very good to be open and honest with our friends. I don't always go into everything I deal with, but I have told them that if sometimes I am on the playground (waiting for the kids, not swinging) and I am frowning and not saying much, it is because my symptoms go up and down and I may be having a bad day. I am aware that I may simply look unfriendly.

OK... now... the reason I signed on to begin with...

Lyrica/ Pregabalin. I was just prescribed 75mg twice a day. The only other thing I am on is co-codamol. I didn't get much advice on it, but my mom has told me all her struggles with it making her feel like a zombie. Anyway, what should I expect when I start taking it? Will I feel funny for a few days? So should I wait until I don't have much to do for a few days? Any advice is welcome.

Thanks people... I keep meaning to post more but it is a really busy time! In fact, my parents are flying from the US tomorrow so I'm not sure how well I'll keep up with the forum. Haven't done great the past week. I'll try though.

Unity

bigzippy wrote: »

It's not the pain of Fibro that's worrying me so much (cos I'm HARD ) it's the completely knackered days that scare me. "Normal" parents look absolutely exhausted so how on earth would I manage? I'm sure we'd make it work, because we'd have to basically, but it does worry me tbh - esp on a bad/low day. The theory goes that you never miss what you've never had, and people which much worse conditions that me manage, so I'm guessing me and the baby(s) would adapt with each other...?

Don't worry BZ, you'll probably not notice the difference . After the first couple of months with a new born, most parents exhibit the signs of fibro :rotfl:, especially if you get a particularly difficult one :eek:. Our middle child was born with a hiatus hernia and seemed to cry non-stop for the first year, she was pitiful - poor little mite. I was breastfeeding so it was particularly hard because she had projectile vomiting as well and the whole lot would come back up. We used to have to keep her propped up in a baby chair at night on the doc's advice in case she choked so we didn't get much sleep at all (I used to joke I slept with one eye and one ear open, just in case) - but you do cope and they do grow up. I think when you are in the midst of it, the only way to cope is by thinking that it won't last forever.

Hope that hasn't put you off, the rewards far outweigh the costs. When you see their first smile, the grin of achievement when they first pull themselves onto their feet, when they put their arms around your neck and tell you they love you and when they fall asleep in your arms - there's nothing better.

bigzippy

pamaris wrote: »

OK... now... the reason I signed on to begin with...

Lyrica/ Pregabalin. I was just prescribed 75mg twice a day. The only other thing I am on is co-codamol. I didn't get much advice on it, but my mom has told me all her struggles with it making her feel like a zombie. Anyway, what should I expect when I start taking it? Will I feel funny for a few days? So should I wait until I don't have much to do for a few days? Any advice is welcome.

Ok I've just switched onto pregabalin and I found the first few days I was more drowsy/sleepy than usual but that settled down fairly quickly (although tbh I did have about 5 days after the first day where I simply forgot to take the morning dose, so maybe I weaned myself in? Might be worth trying it that way if you do get really sleepy?). It's made a big (good) difference though for me

Thanks for the advice about the kids, I shall bear it in mind. Makes me feel a bit more positive and utilising that "helpful" phase that kids go through could be a definite bonus.

bigzippy

Thanks Unity, I'm actually now thinking I might be less worried about the baby stage than the toddler stage. And then, past that, day trips out etc that I won't be able to participate in (fully or at all) and miss out on

pamaris

bigzippy wrote: »

Thanks Unity, I'm actually now thinking I might be less worried about the baby stage than the toddler stage. And then, past that, day trips out etc that I won't be able to participate in (fully or at all) and miss out on

You do adapt to those things... I may not make all the day trips but I do try to stay connected. I stay connected by having friends over each week one at a time. Basically, just think of things that you can do, and invite people. Yeah the toddler stage is the most demanding. But it is temporary.

I think that having this disease has the potential to make us more flexible, creative and adaptable in our parenting (and in general). I say that because we're so used to modifying our behaviours and seeking solutions. Don't worry. That part of my life (being a mum) is not so bad at all. Has its moments though.

Careful_with_that_Axe

BZ, you must go to the docs with that heel injury. If you have any reduced blood flow to feet with Reynaulds, it could take a long time to heal. It may also need sticking together and the flap bit of skin may be dead and need to be taken off. Now that prolly is TMI, but you really should get it checked coz of where it is.

suep

pamaris wrote: »

OK... now... the reason I signed on to begin with...

Lyrica/ Pregabalin. I was just prescribed 75mg twice a day. The only other thing I am on is co-codamol. I didn't get much advice on it, but my mom has told me all her struggles with it making her feel like a zombie. Anyway, what should I expect when I start taking it? Will I feel funny for a few days? So should I wait until I don't have much to do for a few days? Any advice is welcome.

Thanks people... I keep meaning to post more but it is a really busy time! In fact, my parents are flying from the US tomorrow so I'm not sure how well I'll keep up with the forum. Haven't done great the past week. I'll try though.

Hi Pamaris
Im on Pregabalin and take 50mg 4 times a day, it did make me feel a bit dizzy and groggy at first but I started on a low dose and built it up slowly so it wasn't too bad, Ive been taking it for over a year now, it seemed to work for a while but like everything I soon got used to it and it stopped doing much and I was going to stop taking it, that was when my Rheumi told me to take Tramadol with it, apparently he'd been to a Rheumi conference and seen a talk on Fibro by a specialist who reccomended Pregabalin, tramadol and amy, Ive since been on these three and they do take the edge off the pain which is better than nothing. That and my tens machine and heat pad help get me through the days at the moment. I just hope I dont get used to these meds as I dont want to go onto anything stronger.
sue