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 03-27-2018, 05:44 PM #1
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Default My body hates me...

Seriously...I'm at the point where I think it's not possible for anything good to happen with my body without something else "breaking" on me. DRG treatment is working well so...

Going on 6 weeks with multiple kidney stones that don't seem to want to go anywhere but are too small for them to want to do any intervention. Today the doctor gave me Tramadol to take as needed for the pain and then if not better in a week wants me to do a second ultrasound to see if they've gotten bigger. Nice plan...let's just wait and hope they grow enough that I can have them surgically removed/broken down...yay me...

Friday my left ear suddenly felt clogged and sound was muffled...ear was a little sore. Since I knew I was going in today to follow up on the Kidney stones I asked about my ear too. Ear wax build up...they try to flush it. Yeah...not only did that NOT work...I now can't hear ANYTHING out of that ear and it hurts REALLY bad. Dr said to just use ear wax softener for 4 days and then come back to try flushing it again if that doesn't work (I had already used that twice a day since Friday...but ok...let's give this a shot AGAIN). I am not looking forward to 4 days of not being able to hear out of one ear...it already has me all sorts of discombobulated...but at least it's distracting me somewhat from the Kidney stone pain so...

And on top of all that...high stress has me in a terrible flare up.

So...can I exchange this body for another one already? This one is tired, sore, and just all sorts of done right now.
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Old 03-28-2018, 03:07 AM #2
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Make an appointment with an Ear, Nose and Throat asap. I had ear infections frequently when I was younger. They have the equipment to remove wax quickly and painlessly. If you have an infection you will need antibiotics in the form of ear drops.

I developed Scarlet Fever once by attempting to unblock it myself. If any liquid gets trapped that can be the catalyst for infection.

You have enough issues going on with the CRPS. I get it. It seems like the hits keep coming. Feel better soon.
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Old 03-28-2018, 04:40 AM #3
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A body vaca! Who is with me!

Catra, a NP screwed me up with the BS that my ear was so clogged that I needed to clean it out. I wish I had ignored her. Months of misery insued.

What helped? I read to put a tiny bit of Vicks in my ear canal. I was desperate enough to try it and it worked amazingly well.
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Old 03-28-2018, 08:24 AM #4
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Thanks guys. I'm going to call the doctor this morning for a referral to an ENT because this is just too much. Zero sleep last night and it feels like someone is stabbing me in my ear. That can't be right or normal.
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Old 03-28-2018, 10:19 AM #5
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Ugh...so just got back from the Dr. Primary care Dr wanted to see me again to check on it, said there's a lot of wax and he can't see what's going on behind that so he wanted me to get in to see an ENT today. But then the nurse called 4 places and none could get me in so they just called and told me to take advil and it should subside on its own. I'm so frustrated...this pain is not normal. So I guess I need to start making phone calls myself rather than just wait and see. Even if the appt is next week I can always cancel if it does go away. Just one more frustrating situation...
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Old 03-28-2018, 10:50 AM #6
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And the first place I called got me in at 3:30 today...so hopefully they will be able to help. But darn...I'm really frustrated by this doctor at my primary care doctor's office (he's not the one I usually see but the one I happened to see at the walk in clinic when I went in for the Kidney stones). I mean seriously...let's get you in to see an ENT today...nurse calls 4 places with no luck...ok just take Advil and it will go away on its own. What?! Thanks for nothing doc.
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Old 03-28-2018, 05:14 PM #7
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My appointment with the ENT went well...they were able to remove the blockage (which was HUGE...she said that would not have come out with at home care and ear drops or with irrigation). It was painful getting it removed but I can hear again...yay...and even though it's sore I no longer feel like I'm being stabbed in the ear with a toothpick. I got some ear drops to help it heal because it's really inflamed but...oh my gosh...so much better already.

I think this means tomorrow I will look into finding a specialist to treat me for the kidney stones as I don't like the wait and see plan this doctor has for that. It's been 6 weeks already...at this point there should be something they can do or at least I will feel better knowing someone qualified is treating me so that if I do need intervention they will know the situation.

Thank you guys for listening and encouraging me to follow up and not just accept it.
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Old 03-28-2018, 09:53 PM #8
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That is the exact situation that at home care can make the situation worse. Your GP should have known better.

I'm glad you were so proactive and are now doing better!

You might consider trying a homeopathic for dealing with the stones.
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Old 03-29-2018, 07:46 AM #9
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Thank goodness you were treated and can hear!

Based on what happened to me with home care ear irrigation I am not surprised by your story. In my case, the wax finally fell out from the Vicks treatment, many weeks after that irrigation bs failed. Why no one would send me to an ENT is beyond me. Do they think we are making up our misery?

For decades I never went to the doctor, so do they think I suddenly developed a fondness for medical intervention. It is wacko!

I guess we have to be very persistent. I only got my xrays that confirmed CRPS in my other extremity by begging, so it is now clear to me what has to happen in the future, never give up.
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Old 03-29-2018, 02:39 PM #10
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I honestly don't know what doctors think sometimes. I don't know if they think I'm exaggerating or just impatient or what. Like this Dr when I saw him the next day to say it was worse started out telling me that in his 3 yrs at the practice he's never had any one come back and say it's worse, and that it was just water so nothing the nurse did would have made it worse, etc. I just...grrr...how about you just try LISTENING to me. I didn't say you guys did anything wrong...I'm saying it now hurts worse so what is the next step. I didn't realize I was asking for advice so far out of his wheelhouse...like...why not just send me to the ENT or tell me to make an appointment with an ENT if you guys don't want to do it. I'm sure there are preferred providers you send people do that are part of the same medical group and whatnot but don't expect ME to suffer just because those guys are unavailable. But this Dr actually asked me why I'm not getting better. How the heck would I know my my body hasn't passed these kidney stones yet or why irrigation made my ear worse. I'm not psychic and I'm not a doctor...just someone suffering and asking for help. And did I mention that I'm tired of hurting and really would just like to not hurt anymore? Thanks.

I'm probably being too hard on the Dr because 99% of the time the irrigation helps and 99% of the time the kidney stones would have passed on their own by now...but all I ask if for doctors to take me seriously and address the issues even if they are outside the norm.
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