Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 06-27-2015, 09:34 PM #1
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Default Needing a little vent...

Having a bad flare up this past week...really struggling to find my balance again between living my life and managing the RSD. I am so blessed with my now 7 month old daughter...she is an absolute joy and treasure. I am seriously one of those people blessed with a happy baby that rarely as in almost never cries and only fusses for a reason (hungry, tired, or full diaper)...and has been sleeping through the night 10-12 hours a night since she was 1.5 months old. She brings so much happiness into my life.

All that said...I'm overdoing it and can't seem to find the sweet spot between doing too much and not enough. I want to do everything with my daughter and now that the weather is nice and she's a little older that includes going out with her for little "outings" and stuff.

Well...Tuesday I went to the mall with baby, my mom, and my grandma who are both in town for a short time. We were at the mall for about 4.5 hours. I'm used to being on my feet for long stretches at work...but at work I have my walker and when out with baby I just have her stroller. We searched a long time to find a stroller that had a handle low enough to support me using it like a walker...but it's not as good as the walker at keeping the weight off my bad leg and it also aggravates the RSD in my arms tring to maneuver it in the stores.

So Wednesday I was in bad shape but worked a full day. Thursday I could barely get out of bed and had to call off work...which I hate doing...and I couldn't get the pain under control. I was off Friday but had the baby all day so I didn't get any relief there. I worked again today and it was really rough...only to come home to my angel of a daughter and want to do everything with her...making me even worse.

UGH!! This flare up is killing me and I can't remember the last time I had a flare up that lasted this long as was so resistant to all my pain management tricks. I think it's because I'm not allowing myself the time to rest and recover physically...and I just don't know how to fit that in.

Sorry guys...just needed to vent a little. I try to be so together around everyone...but this RSD crud is just kicking my butt lately...
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Old 06-27-2015, 10:05 PM #2
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I think you hit the nail on the head, tooo much go go go! Its hard to stay home all the time and watch life pass you by. Unfortunately RSD will be with you whether you are having fun or not. So if you push yourself too far once in a while its ok. Sounds like you need to recharge your batteries now. I hope you find some quiet time and know that this too shall pass. May you feel better tomorrow
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Old 06-29-2015, 12:17 AM #3
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I totally feel for you. My children are older (14 and my "little one" will be 12 in a few days), but one day a week I take care of my 14 month old nephew. I've been doing this since he was 3 months old. I love him dearly, but it is really hard on me. I pay for it the next day and sometimes for a few days afterwards.

I can't imagine having to do it every day. Though you see their beautiful little faces and you want to give them the world. What I have learned is that they just want your time. If that means an hour outside for a "picnic" great. If all you can manage for the day is snuggle time on the couch, then that is good too. My nephew is just happy to have my attention.

I've also learned that if I have my mother or son with me I make it very clear to them if I'm struggling that day and let them know exactly what I need from them (push the stroller, take the baby out of the car, etc).

My husband constantly reminds me that he is not a mindreader and to tell him exactly what I need. People are willing to help, you just need to let them know exactly how to help.

Maybe next time someone can push the stroller and you can use your walker.

We all over do it from time to time. When you're in the middle of a flare it feels like it will never end. I wish flares had an expiration date, "I will end next Tuesday at 4pm." I feel like I could cope better if I knew how long I had to put up with it. It will end. Treat yourself well. Ask for help. Vent here anytime
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Old 06-29-2015, 08:35 PM #4
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Thanks.

I think part of the problem is what happens when I DO ask for help. my boyfriend always helps out if I ask...always. BUT...he has this awful habit of saying the following to our daughter as soon as he takes her, "I know...your mother hates you...what do you want me to do about it?" I've told him not to say that...so now he seems to make a point of saying it ALL the time...and it makes me feel like crap.Having already explained this several time to him...I do not expect it to change. I think it started out as a joke and now it's just become one of his little button pushing jokes. Whatever the case...it makes it hard to ask for help when you know that's what you're going to hear.

But I definitely need to figure out a good balance of taking care of me and taking care of her. 7 months in and I felt like I was getting better at it...but now she's getting so big that it's getting harder for me to carry her and hold her...and she's getting stronger so its a lot easier for her to hurt me. Sigh...we'll figure it out some how...
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Old 06-29-2015, 08:46 PM #5
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hi Catra,

You must be so sick of hearing that! and so sick of asking for it to stop. I think it fair to really put your foot down on this one. At 7months your daughter is absorbing and processing language at an amazing rate. She will assign meaning to words, even abstract ones, before she can speak them. Your boyfriend needs to understand that AND that she will not be able understand sarcasm till much later.

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Old 06-29-2015, 09:46 PM #6
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One of the biggest challenges of being a mom is taking care of yourself while taking care of your kids, especially when there are physical challenges. Absolutely ask for help, but yes he needs to understand that if he keeps telling her that, she's going to believe it eventually. Nobody should be adding to your difficulty. Hope you can manage to get some rest and recovery time soon.
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Old 06-30-2015, 12:56 AM #7
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Can I encourage you to invest in some help? Even if it's a neighborhood girl willing to come in and help while your at home? I started doing that at age 11 and continued until I turned 18. Some moms were just overwhelmed. One had cancer. I made meals, did laundry, light cleaning, and took care of as many as 4 kids at a time. One mom just had me walk her newborn around while she took riding lessons. In whatever context you need help, ask for it. You might also be able to get some free grown up help by letting friends and family know you need it. If you have an extra room, you could offer to trade a college student help for free rent, even... Maybe you could offer to watch someone's bay overnight and they could take her for more active play dates. Unless it's inconvenient, consider sending her to daycare on days you have to take off for health reasons so you actually get the break you need. Etc.

You really have to nip that joke in the bud. Explain if you're unable to communicate to him how serious you find it, that perhaps it's time for you two to start couple's therapy. --And I'm not joking or kidding about that. He is slowly poisoning your relationship.

My son was a very similar baby to yours, he slept well and long, and rarely cried, unless I wasn't at home. My ex, only had to take care of him two nights a week while I was attending college. Although he spent a few hours, every day, at the gym, he complained constantly about having to carry him while I was gone to keep him from fussing. It annoyed my mom to the point that she just took over to shut him up. He could bench press more than his own weight, but couldn't lift a 10 lb baby? It was not a good sign of things to come.

In some they're harder to take care of as infants, and in some ways they're much easier. It's reasonable to expect you're going to need more supplemental care for your sake and hers at different stages of her development. I know you expect the world from yourself, but it's okay to admit you need help.
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Old 06-30-2015, 05:24 PM #8
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Hi Catra,

Fully agree with everyone above about this 'joke'. Tell your boyfriend from me he's being a prime example of what he keeps in his pants! Parents (even involved Grandparents like my Ex and me) have to be on the same upbeat page from Day One.

Just remember, as babies grow - rapidly - into toddlers they soon become more independent, and easier to handle.

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Old 07-02-2015, 08:56 PM #9
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hi catra, i hope you're feeling better today. soft hugs coming your way.
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Old 07-04-2015, 04:32 PM #10
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Thanks again everyone. That last flare was a doozy and I haven't flared like that is probably several years. It wasn't the worst pain I've ever felt...I've had higher pain levels...but gosh darn it this last flare lasted over a week and even my bad ones usually only last a few days. This last one just wouldn't let go.

Thanks for all the different ideas...I will possibly look into getting some more help. This month with daycare I actually set up pick up an hour later than I've been doing...that way I have time to go home, rest, eat, etc before having to pick the little one up. Daycare is 5 minutes from the house...so I'll have an hour or so of recovery time before jumping right into full on mommy mode. Thursday I told my boyfriend he was getting up with the baby in the morning and got an extra hour and a half of much needed sleep.

So I'm feeling much better today. Weather is warm and we're setting up the pool (warm water) and hope to enjoy some relaxing time after work today, tomorrow, and Monday.
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