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 04-28-2010, 12:48 PM #1
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Default Pain from sounds and vibrations?

Hello So . . . I recently moved in with my fiancee and his 8 year old son. My foot has always been sensitive to sound and vibrations, if I'm around even semi loud bass I go into a flare, and the vibrations in most cars drive me crazy, I can't be in a car for more then a few minutes without a major increase in pain.

Now with the new house, the 8 year old is constantly running, jumping, stomping, ect . . . . It is driving me absolutly crazy and I've spent the last 3 nights (just moved in Sunday) crying all evening in pain. I know it's unfair to the 8 year old, he's a kid and is going to do all those things, but I don't know that I can handle living there with it. It's a one story house, and it's fairly small, so stuff seems to carry no matter what part of the house I am in. We bought this house, so I can't just up and move without screwing my fiancee. He's tried to tell him son to not stomp and stuff, but it doesn't really help because 10 minutes later he's doing it again.

I don't feel like it's fair to limit what a child can do, but I don't know what else to do. I don't have breakthrough pain meds, so there's currently nothing in my medication regime that I can take to help, I'm on a schedule and am not going to take an extra pill at night and run out early or something. But it just keeps getting worse and worse.

Does anyone have anything they've done - medication or other therapy - that helps with the pains caused by loud sounds and vibrations? I'm totally at a loss about what to do, I feel like I'm now trapped in a situation that is going to be torturous and after 3 days of it I'm already dead tired because I can't sleep from the pain, worn down emotionally, and just don't know what to do.
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Old 04-28-2010, 02:10 PM #2
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My first question to this is: How did the child behave when you & the boyfriend spent time together before buying this house & moving in together? I would think the way the child behaved before this would have showed you what it was going to be like when living with them. There is nothing out there any where that is going to help pain, whether taking it orally or applying it, when said pain is aggravated by loudness & vibrations caused by an 8 yr old child or by anything. BTW, how did this child behave before you went into this situation of moving in? Was he this inconsiderate & rude before??

2nd question: Why are you letting a child holler, & run & stomp in the house anyway? That is NOT inside behavior that is acceptable to me, or any adult that I know at any time, especially from a child who is 8 yrs old. It sounds to me as if this child needs to learn some manners & it is at home where he learns them & acceptable behavior when indoors or outdoors. Running, stomping & hollering is only acceptable behavior for out door play. I have 3 grandsons ages 8, 7 & 4 yrs old & there is not a one of them that is allowed to run, stomp or yell in our home & I don't see them behave that way in their home either. And it is fair to limit what a child can & can not do. How else does a child learn?? We have to teach them. If we don't they all grow up to be spoiled rotten brats..........and always expect everything to go their way.

It is time to have a talk with the father about what is acceptable & what is NOT acceptable behavior in your home, indoors & outdoors both. Also what you can & can not stand as far as what aggravates your pain. This conversation should have taken place prior to buying a house & moving in together, but since it didn't now is not too late. He knew about your pain obviously before you both decided to buy a house & move in together. So I am assuming he wants you to also be happy & comfortable in your own home also. So talk about this with him. Who are the adults here?? Who is setting this childs limits & boundaries? Now is the time to do that since it hasn't been done before this. All kids will fight these boundaries & limits but they all need them irregardless. They will respect you more in the long run than if you just let them run wild. It doesn't sound like this 8 yr old has been taught what his boundaries & limits are let alone many manners, what you will allow & not allow in his behavior & what is expected of him. If you give in to his wants, his wants being to run & stomp & holler all he wants indoors, then you in in for alot of trouble in just a few short years. He is testing YOU & DAD to see how far he can push you both. But especially how far he can push YOU!! And it makes no difference whether he is there to visit or lives with you most of the time. NOW is the time to step up & be a mother figure to him & take control of the situation. I again am assuming that the father lets you discipline this child?? If not, again you are in for a boat load of problems in the future. You both need to agree what his discipline will be if he 'forgets' & keeps running, stomping & shouting & generally misbehaving in the house. The discipline needs to be something you both can live with or it won't work either. Also now would be a good time to start this child on few simple chores each day or week if this has not been started already. He obviously has too much time on his hands if he is misbehaving.

I wish you good luck with this. And I may have come across a bit harshly but this is your life also & it sounds as if you are at a loss as to what to do. Again good luck.

DebbyV

Last edited by Debby; 04-28-2010 at 02:34 PM.
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Old 04-28-2010, 03:35 PM #3
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Before we moved he lived in a 2 story house, and I was rarely upstairs (because I HATE walking up or down stairs, my rsd is in my feet and legs), and the bottom level was concrete, with the backyard being concrete and grass. So it was never an issue because nothing really carried. In the new house, it's all one level and everything carries . . . And the backyard is almost all deck. The child's room was upstairs next to his grandma, so I was really isolated from all the sounds and it never occured to me that it would be a problem until we moved

The kids has had some behavior problems, but this seems more like just being a child and not understanding or just forgetting. He tends to jump out of excitement, and really likes me so he tends to want to follow me around a lot . . . . The kitchen and dining room are sunken, and he will always jump up or down, plus he has a bunk bed (which his grandma bought for him for the move) so that involves plenty of jumping too . . . And his grandma was kind enough to buy him an electric guitar . . . He hasn't really played it much, thankfully, but I'm dreading that . . . . He also loves my dog, and wants to follow him around, like a dog, but he tends to thump a lot more like a frog then a dog crawl. His grandma always spoiled him and pretty much let him do what he wanted, so its definatly an uphill battle trying to get him to behave.

Everytime he does this sort of stuff, my fiancee yells at him to stop, and makes him take a time out, or he gets tv or game privledges taken away for x amount of time. He is an only child, and has lead a rather spoiled life . . . . I definatly see what you are saying as far as the discipline goes, but everytime I've brought it up to my fiancee he has said he'll deal with it, but that kids will be kids . . . . I don't know if this problem will resolve it'self soon or what, but now the constant yelling that follows the stomping or jumping is getting to be just as bad . . . . . I feel like I don't want to say anything to my fiancee about it because he's trying to deal with the situation, and I know if I tell him that he's just aggravating it more it will hurt his feelings too, which will make me feel bad, and then more pain . . . . It just seems like a no win situation!

He knew about the pain aggravators before - Everytime I go in his car, even for a short ride, I'm throwing up from the pain. I used to go to sporting events or bars to watch games with him, and had to stop because of the noise and people stomping when something good happened with the game. He also has a pcp that just happened to be an RSD research doc a few years back, so he's also heard it all from his doctor. I know if it came down to it though, he's got to do what is best for his kid. I KNOW I am looking for an easy way out - more discipline = unhappy kid during the "adjustment" period, which is more stress for me, and even though my fiancee understands better then most people, I don't think he really understands how much it aggravates things. I think he is beginning to understand, seeing how he has seen me crying every single night, but I think it's hard on him because he feels it's normal 8 year old behavior and is only disciplining him because of me. I feel like if I wasn't there, it would be acceptable to him. And that I think it the main part of the problem - If it was not for my rsd, this wouldn't be an issue to them. They don't see it as a behavior problem, I feel like they see it as my problem.

I didn't take it as harsh - I know it's my reality and something has got to give, and I really don't know what direction to go. He's already had to have a talk with his kid because the first day the kid told me he only has to do what his dad says, so we had to sit him down and made very clear that what I say goes, and that he should understand that if he does not follow what I say, then his dad will be very mad and he will get in trouble. And really now it's to the point where when he does it, he's corrected and he says he's sorry, but then it happens again 10 minutes later. Last night alone I was only at the house about 2 hours last evening, and he had to be told not to jump or stomp about 15 times.

I realize that I may have to suffer through for a while until we get it under control, and while it won't be a picnic for me, in the long run it will be much better. I just don't know how to survive that period . . . My mom told me I can stay a few nights at her house, but I know that won't really help because when I'm not at home I think the stomping behavior is allowed to happen. I really thought this would be a great move - So much closer to my doctors and work, so I hardly have to drive at all, and it's a beautiful house. Now I dread going there . . . .

I think I will start with talking to my fiancee a little more about this - I think if I can change how he thinks about this then I have a better chance at getting some results. Any discipline will obviously be totally ineffective if it only happens when "mommy" is home. It needs to be consistent. And i think he needs to understand that this is not acceptable behavior, regardless of the age of the child.
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Old 04-28-2010, 04:33 PM #4
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Sounds and vibrations can hurt but I suspect most of the damage they do is just like any other noxious stimuli and are not dependent on your affected limb being exposed to it. That is you might consider wearing ear plugs. They make different types and most can be modified to provide greater comfort or less sound blocking.

If you find the low frequency vibrations still disturb you then try having your foot up as much as possible where it's not so exposed.

Make sure the kid knows exactly the types of things disturb you if anything still does. People will learn to make allowances where they are possible.

Good luck.
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Old 04-29-2010, 09:01 AM #5
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I wish it was just an obnoixious sound, but in reality for me it hurts really really bad. Sounds or vibrations have sent me into a flare many times. I've actually tried ear plugs, but it doesn't make a difference. I would guess that I could be deaf and they would still affect me. It's only certain sounds, low bass and low sounds of a medium to loud quality, screeching, although annoying, doesn't have the same affect on me.

Things kinda blew up last night. His grandma was supposed to have him until about 6, but showed up at 4 with no warning. I was making my dog his dinner, and he ran into the house and took a flying leap, landing right next to me. I reminded him no jumping, but within 5 minutes he did it again. It hurt so much that I ended up yelling, and my fiancee thought I was yelling at him (didn't say any words, just made a sound). So he left and we ended up getting in a fight. He is upset because I am upset, and he thinks he is doing everything he can, but "boys will be boys". I told him that I can't live like this and if that was the case I would have to move and call off the wedding, because I'm not going to stay in a situation that is aggravating my pain to such a degree on a daily basis. We didn't really come to a resolution on it, so I guess I'll see how the next few days go.

I already spend the majority of the evening with my foot up, but I have to keep myself moving. I've found that if I get lax on excersicing, my ankle starts getting stiff immediatly. Things like feeding my dog and myself, going to the bathroom, etc, just can't be avoided.
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Old 04-29-2010, 02:27 PM #6
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I am sorry but "Boys will be boys" is a BS answer. Boys need to learn the difference between inside behavior & inside voices compared to what is allowable outside. Like I said I have 3 grandson's & they are all brothers, 8, 7 & 4 yrs old, & they sure as heck do NOT act like this 8 yr old. Sounds like this kid has pretty much had the run of the show & is just plain spoiled for what ever reason. I have raised a very rambunctious boy myself & I certainly did NOT let him run & jump in my home. It just isn't acceptable behavior for any child to do those things in my opinion. Whether it causes you more pain or not I would put my foot down *LOL* but that is me.

Especially when he comes in & right away just jumps right beside you. He is testing you big time. He deserved to be yelled at. I think your BF is having a problem with this because he feels he is being told basically that his parenting style isn't working for you. Do you suppose that might be some of his reaction? Besides what works for a single Dad isn't what works for the woman of the house. I can totally see a single Dad with a son letting him do the running, stomping, jumping & hollering throughout the house. I can see how it is totally acceptable to him. But I sure don't know of any woman who would look at it as being acceptable behavior, let alone acceptable for someone in RSD pain like you are. Try to approach the BF with this thought in mind & try to point this out to him. Maybe going this route will get him to see your point better. I sure would hate to see you have to breakup with him & not get married because you two can't agree on how his kids behavior needs to be modified. One thing that worked with my son was when we involved him in the discussion of what was ok & what was not. And if he slipped what did he think would be a good discipline for him so he could learn to remember. Has it been explained to this kid why he needs to settle down while inside?

Good Luck Holly!! I really hope you all can come to some agreement.

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Old 04-29-2010, 03:31 PM #7
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Quote:
Originally Posted by hollyk24 View Post
I wish it was just an obnoixious sound, but in reality for me it hurts really really bad. Sounds or vibrations have sent me into a flare many times. I've actually tried ear plugs, but it doesn't make a difference. I would guess that I could be deaf and they would still affect me. It's only certain sounds, low bass and low sounds of a medium to loud quality, screeching, although annoying, doesn't have the same affect on me.

Things kinda blew up last night. His grandma was supposed to have him until about 6, but showed up at 4 with no warning. I was making my dog his dinner, and he ran into the house and took a flying leap, landing right next to me. I reminded him no jumping, but within 5 minutes he did it again. It hurt so much that I ended up yelling, and my fiancee thought I was yelling at him (didn't say any words, just made a sound). So he left and we ended up getting in a fight. He is upset because I am upset, and he thinks he is doing everything he can, but "boys will be boys". I told him that I can't live like this and if that was the case I would have to move and call off the wedding, because I'm not going to stay in a situation that is aggravating my pain to such a degree on a daily basis. We didn't really come to a resolution on it, so I guess I'll see how the next few days go.

I already spend the majority of the evening with my foot up, but I have to keep myself moving. I've found that if I get lax on excersicing, my ankle starts getting stiff immediatly. Things like feeding my dog and myself, going to the bathroom, etc, just can't be avoided.
Hi Holly,

First, I'm really very sorry you're going through this and I understand what a non-stop challenge this is starting to become. Just the length of time a problem goes on can make the pain worse, because there's no recovery time, so the pain keeps escalating, even if the vibrations become a little less frequent.

I know you must be feeling tremendous stress from not only moving, but having unexpected pain and conflict at what "should be" such a wonderful time for you. The parenting and relationship issues that weren't a problem before, are suddenly feeling critical. Stress is yet another trigger for flare-ups.

I have a few ideas that may or may not help. I'm sure you've already thought of/tried some of these, but here goes:

I sometimes use a hammock chair screwed into the ceiling. the vibrations can't reach me from the floor and I can have soft pillows on the areas that come in contact with my body. (mine has a main chair area and smaller areas for arms/ legs.) It's important that it's hung from the ceiling, not supported from the floor. There are lots of styles and materials. A web search can show you tons of options and prices can be very llow in the 30-50 dollar range.

otherwise, I think you at least need a large comfortable chair that's only yours and no one can physically jump on the same space where you're sitting.

Is there a portion of the house (or outdoor space if you can stand sun/wind) that can be "Holly's Haven" a no bounce zone? it can be pretty small, just a place for whatever makes you comfortable (maybe a chaise or exercise mat and bolsters) where you can just feel safe and isolated from the bouncing? (if the boy can understand and respect that space, you may be able to gradualy expand it to more of the house)

are you planning on doing any renovations to the floors or any part of the house? there maybe some building options that can reduce the spread of vibrations and noise (extra layers of material on floors/walls or materials that naturally provide more cushioning, cork maybe?) i used to work in a radio station and there are some sound proofing materials for walls that could help, especially if you are only using them in a small area.

no cost ideas:
one thing that may work is pretty much the opposite of the safe area: having a bounce place and time. ideally, this would be outside and your soon-t- be step-son could be encouraged to do all the jumping, bouncing and running around he could for a set amount of time- maybe even set a timer and tell him he has to keep bouncing, running, etc. until time runs out (not as a punishment, but to give him a safe way to work off some of his energy.)
if it has to be inside, maybe you can be as far away as possible for that set time.

I don't know if there's an option for any outside activities, swimming, park, play area but that might be a huge help! if not, a structured activity can really help. most libraries have free dvds for martial arts, yoga, etc that might interest him, so he can not only work off the energy, but gain some of the mindfulness/awareness that these practices teach. many libraries provide materials by mail (free!) to disabled and anyone living with them; you can request items by phone or online. many have tons of relaxing music cds, that might have a calming affect.

I'm not sure what exercises you do for your leg, but before I got hurt, my (then) little one watched me doing simple, relaxing exercises, and that was something we started to do "together". even if your exercises are really pt, he might learn to be more gentle by copying you. it might be a nice way to transition from his bounce time to family quiet time.

you mentioned your schedule and i think some kids do very well when they know what happens when. maybe he's just excited about his new home and everybody being together, so he may settle down a little more naturally, soon.

someone once told me not to make a permanent decision based on a temporary problem. you all did well in another house, so you may be very able to get back to that, once you find a way to adjust the surroundings. The boy won't be 8 forever, and he may settle into a thoughtful, considerate tween/teen. I hope there's a way you can have everything: your peace, pain relief and marriage plans.

I'm concerned that you don't have a break through plan. It might be something you and your dr can figure out with a phone call. Good luck!
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Old 04-30-2010, 08:58 AM #8
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Thanks for the ideas I'm going to see what I can try and go from there . . . . I think my bf is starting to come around, yesterday I took the afternoon off work so I could get some rest when things were quiet at home. The kid wasn't suppposed to be home until 6pm, so I laid in bed and my bf went out to the store. Not 5 minutes after he left, his mom brings his son home, about 3:15pm. My bf was really upset and is now beggining to see that my frustrations with this situation are real, and do need to be resolved. The reason the kid came home early? He told his grandma he wanted to. So she brings him, no call, no nothing, just does what the kid wants her to do . . . . So he is very much used to getting what he wants, when he wants, so that is going to have to change, and we are going to work on some better structure at the house.

I'm going to talk to my doctor, I see him next week. In the past he's wanted me to take some lyrica when I get a flare, I don't take lyrica on a regular basis because I feel all zombie like and hungover on it. Well, I also seem to get violent in my sleep when I take it So that is a no go . . . . Currently the only treatment modalities I have when things get bad are my regular scheduled meds, tens unit, relaxation, and rest . . . .

What sorts of meds or other treatments do you guys find useful for breakthrough pain/flares? I know everyone will react differntly to all the meds and treatments, but I want to be able to suggest something to my doc. He isn't really that educated about treatements for crps.
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Old 04-30-2010, 09:59 PM #9
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Hi HollyK, I am so happy to hear that things may be getting better for you. I use Lorstsb for flares and a lot of TLC. Sleep well, Lisa
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Old 05-03-2010, 04:54 PM #10
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Default Hope you feel better!

In the past he's wanted me to take some lyrica when I get a flare, I don't take lyrica on a regular basis because I feel all zombie like and hungover on it. Well, I also seem to get violent in my sleep when I take it So that is a no go . . . . Currently the only treatment modalities I have when things get bad are my regular scheduled meds, tens unit, relaxation, and rest . . . .

What sorts of meds or other treatments do you guys find useful for breakthrough pain/flares?

Hi Holly! I wanted to answer for myself about what I use. Lyrica makes me a zombie too, but it really helps me a lot. some people have/had different dosages of it to get through different parts of the day maybe 50 if needed to drive in the next few hours and 150 when I was home for the day.

I had 5 rounds of the multipack steroids, which helped. I've tried neurontin and all the antidepressants except 2 effexor; they all made me sick to the point of having to stop. I took viciprofin for about a year and tried other options. I'll be going back to that in a few days. we've been trying percocet and I'm still trying to feel okay, but I feel like I have to stay with it until the week is up regardless.

There are lots of meds that may make a difference for you. There are lots of threads here about different treatment options. I'm really glad your bf is understanding. I hope you can have a wonderfully happy and sufficiently peaceful life together!

Wishing you well,
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