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 10-13-2014, 09:16 PM #71
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Hi Catra! SO sorry to hear of this injury. Bad timing.
Thank you for sharing your photos and letting us share your joy. A new child is a miracle and a blessing and I am in awe of each one. These pics are a wonderful way to celebrate this very special time in your life. Best wishes~ Lottie
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October 2014 Rheumatoid Arthritis.
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Old 10-15-2014, 10:27 PM #72
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Hope your shoulder get better soon and pt helps for sure.
You looked so pretty ,pregnancy is no matter what situation you are on,the better days in life you will remember because there are unfortunately many women who can't have babies. I wasn't able to get pregnant after my only child ,I was bless with a child that I almost didn't have ,I was having a miscarriage and he dr asked me if I wanted to have more treatments to try to keep the baby,she was outside her uterus and I said yes I wanted to try more and it was successfully ,it meant to be, I didn't have any more pregnancies at all, I was 18 years and didn't know much about life,I was coming out of a country where sex and early pregnancies are no subject of conversation, but I had my child now like I proudly mentioned her ,21 years old and I do understand how much you have struggle and still is a worry thought you have in your mind, I get that and I'm so happy to see you enjoying life and also ,enjoying your sweet girl.
I was alone during my pregnancy,I never felt or knew how a woman is treated during those days , I was alone ,I have only one picture if me pregnant and makes me happy I have that at least,she doesn't know her story,she doesn't know as many until now, her father left me while he found out I was pregnant and later decided that he made a mistake but was too late to go back.
I got married to an Honest loving men who loved me and loved my child as his own,he took such if good care of us ,still now,we couldn't have children of our own,meant to be that way, she doesn't know that either and we kept it that way,I still wondering if we did the right thing,her biological father told me he supported me and if one day came he will agree with whatever I told her but I didn't tell her anything because behind her story is mine,a sad dis functional family , she doesn't need to know the past, my past is sad and painful not because rsd but for psychological and victim of child abuse,wasn't the life I imagine but I overcome all the obstacles, that is included in my memories during those days.
I found a men who care about me and respected me no matter of my past or what my own family said about me. I'm a good person and was many times mistreated and one thing I never aloud is someone mistreated me anymore.we didn't have kids together but at the end we do mew had a girl and a boy who now has three girls ,I'm a grandmother of three girls,I'm happy to see your happiness and made me little melancholic at the same time,it reminds me I never knew the feeling of being supported and my baby girl wanted , I wanted her and fight for her ,I got bless ,I don't know why I can longer bare a child ,but I'm happy not to be a bad mean mom and person ,I got what meant to be for me and I'm proud and happy of how she becomes a little young lady so focus on her university and her goals .
I have both father and daughter holding my hands ,wiping my tears so many times and loved me as I loved them
I'm so happy for you and can't wait to met our niece soon, I was born November who knows ,she might pick my date to arrive .
Blessings to you all and I love so much to see you and thanks for sharing all those specials moments ,are really special for me too.
gentle warm hugs with love Jesika .here is our family ,I'm holding our newest member .
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Old 10-22-2014, 09:44 AM #73
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I'm so sorry you had a bad day, hoping you flare goes away soon. I am so happy for you, Congrats on your pregnancy! please take care of yourself and keep us updated...
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Old 10-23-2014, 04:42 AM #74
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you look super Catra! thanks for the pictures. congrats again on you oncoming arrival!
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Old 10-24-2014, 01:21 PM #75
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You know...since getting RSD my faith in the medical community (doctors in particular) has dwindled to just above zero. I've encountered so many incompetent and uninformed doctors...but the worst ones are the ones who CHOOSE to be that way...the ones who do not care enough about their patients to be "bothered" to listen to them, discover their concerns, or learn about their conditions and what they are going through. These sorts of doctors, in their arrogance, cause so many more problems...and I think it's down right criminal when that arrogance causes their patients harm. This is why I do not currently have a "treating" physician when it comes to my RSD. At this point...there is nothing for them to offer me and I refuse to subject myself to their nonsense and repeated visits that will serve no purpose other than them possibly trying to bully me into some form of treatment I don't want. I have done very well taking control of my own treatment when it comes to my RSD and taking back control of my life.

Now...being pregnant...I find myself once again under the care of doctors. This is obviously necessary...but it has done nothing but reinforce my lack of faith and trust in doctors to care about their patients. Don't get me wrong...there are good ones out there...doctors and nurses who genuinely care about their patients...who take the time to listen to them and do their best for them. But the experience as a whole...dealing with the doctors...has been horrible for me.

I'm going to a practice of OB/GYN doctors...there are 4 main doctors there and you see all of them while you are there. Three of them are fine...they don't strike me as GREAT doctors or anything but I have nothing really negative to say about them either. One of them...is the worst sort of doctor I can imagine. I have had 3 encounters with her and all three have been AWFUL. She's the one that messed up the notes regarding me seeing the high risk specialist (saying I didn't want to see one when our discussion was completely the opposite and I REALLY wanted to see one) and then the one who tried to force me to stay in the hospital when I was in a severe RSD pain flare instead of going home to treat it. I know I've talked about both of those here in my various updates. Yesterday was my third encounter with her and yet again she has demonstrated a complete lack of concern or care for my well being and interfered in my attempts to take steps to minimize the risk of spread or severe flare up as a result of the birth.

So...I had my appointment with the high risk specialist on September 16th and while she said everything was on track and looking good with the pregnancy itself...she strongly recommended that I have a consult with anesthesiology at the hospital to make sure they followed certain protocols to ensure I minimize the risk of spread or severe flare up during delivery. I thought this was a great idea and she sent her recommendation to my regular OB office. I spoke to my doctors on the last two visits and they said they didn't want to order the consult too early...but this visit (the one I had yesterday) was the one where they would order the consult and get that set up for me. I was concerned about waiting so long...but it didn't matter that much so long as it happened.

So...yesterday was the big day...that was the big thing I had to make sure was handled during my visit. Not a great start to the appointment...which was scheduled for 2pm and they sent a text message reminder asking me to be there by 1:45pm. Guess what time the doctor came into the room? 3:05pm...over an hour after my appointment. I'm usually very easy going with this sort of thing...I know emergencies come up especially in an OB office where a patient might come in with some concerns and whatever. A doctor running 20 minutes behind doesn't even phase me. I do, however, expect some sort of acknowledgement from the staff and/or doctor when the wait gets excessive. Not a word was said to me about how late they were running...and I find that just incredibly disrespectful. Another example of how little they think or care about their patients.

Then the doctor comes in and spends 5 whole minutes with me. I don't even want to think about how much they charge per visit for 5 whopping minutes with the doctor. She brought up the consult with anesthesiology and said she really didn't think it was necessary but said that she would call and find out if that was something they would do. I tried to explain WHY I wanted the consult, that the high risk specialist recommended it, etc...and she didn't seem like she was listening at all...just repeated that she didn't think it was important but that she would call and they would "let me know." Then she asked if I had any issues with infections (that was what I was in the hospital for) and I said yes...I just finished another round of antibiotics the day before because the last time I was in they found another UTI. She said ok...they would check next time to see if there was any sign of infections. I said why not check today (I had left my "sample" already) and she said it wasn't a big deal...they would check next time. Right...I was in the hospital less than 2 months ago after I had a UTI, took a week's worth of antibiotics, the antibiotics were apparently not effective because the infection didn't get taken care of, and I ended up with a kidney infection so bad that I spent a couple days in the hospital on IV antibiotics...but it's not a big deal and we can wait two weeks to see how it goes. No joke...this was the extent of our 5 minute conversation.

So I go to the front desk, make my next appointment for 2 weeks from now, and make my way out. But the receptionists yells out my name and waves me back. So I come back...and the doctor comes out into the waiting room with my chart. Yes...the waiting room...which was empty but still not a place I feel the following conversation should have taken place because even though there were no other patients the entire office staff was right there behind the front desk (about 10 people). SO unprofessional!!

She tells me she just got off the phone with anesthesiology at the hospital and they agree with her that there is no need for me to talk to them. I explained again why I wanted to consult with them and she said that she mentioned I had "muscular dystrophy something or other" and they didn't see that it would be a problem...so I "will be fine." Again...I tried to explain and she cut me off saying they agreed with her that it's just not necessary and I'll be fine. I just sort of stared at her for a minute and said "whatever" and turned to leave. She then says as I'm walking away, "If you have any other concerns or questions you can just let us know." To which I turned around and said, "Why would I bother? You obviously don't care about my concerns at all." And then I walked out.

By the time I got to the elevator I was crying...sat in my car for a good 15 minutes crying before I felt I was in control enough to drive...cried the entire way home. That is absolutely absurd...I should NOT be made to feel that way by my doctor. I know it was probably an overreaction...but seeing as I'm pregnant I think I'm allowed to be a bit emotional. I don't know if I can describe how much importance I was putting on this idea of having a consult with anesthesiology...I was really counting on being able to speak to them about the hospital procedures, what the protocols were for the delivery, about my RSD, about how I wanted things to be handled and if that was possible, if not what my options were, etc. Why did I even bother seeing a high risk specialist if my doctor had no intention of following her recommendation? UGH!! I can't begin to describe how disappointed and angry I was/am over the whole thing.

What upsets me just as much is that I really have no faith or trust in this doctor to do the best for me and my child. She clearly doesn't care about me and the impact the RSD will have on my ability to care for my child after the birth if things don't go well. I know there's risks no matter how much planning I do...but that shouldn't stop me from trying to make sure I do everything that IS in my control to try and minimize those risks.

I do NOT want this woman to deliver my baby...but in this practice it could be any one of the 4 doctors who delivers the baby depending on who is on call that day. The way things seem to be going for me...I feel like it's going to be her and I would rather have a stranger deliver my baby than let that doctor anywhere near me and my baby during delivery. I feel that strongly about it...and yet I don't know what to do. I feel like at this point (35 weeks)...it's just too late to change practices and the other 3 doctors are fine. There's only a 1/4 chance that this will be the doctor who is on call when I deliver...but there's still that chance. I don't know why I have had such a hard time walking away from this practice...I should have done it after that first incident with her...but for some reason I'm just too scared to walk away and start somewhere new so close to my due date.

I hate the way this doctor has made me feel and I had a hard time calming myself down yesterday. My boyfriend said I need to take it down a notch or I will either put myself into a flare up or into labor...maybe both. I'm calm now but still mad. I made sure to fill out a medical power of attorney for my boyfriend so that if I cannot communicate clearly during labor that he will have power of attorney regarding my medical treatment. I've also written out a detailed birthing plan of what I want/need during delivery, what they are NOT allowed to do because of my RSD, etc and my boyfriend will be watching them all like a hawk during the whole time in the hospital. He's prepared to be my advocate and throw his weight around if necessary. And I think that's the best I can do right now.

I have an appointment in two weeks (which seems odd...I was told they would be weekly visits at this point...but whatever) and it's with a different doctor so I plan to have a copy of the birthing plan and power of attorney with me so that I can go over everything with her and make sure they have copies of both. I really wanted the consult to anesthesiology so I would know how realistic and feasible the birth plan is and also if there were any better options available to me...but this will have to do I guess.

Sorry for how long this post way...I just had to get all of that off my chest. The baby is still doing very well...she's very active and does not seem bothered in the slightest by any of the other things that are going on. While I hate dealing with the doctors...I am loving every moment of being pregnant and trying to focus on that through everything else.

In other news...my shoulder is feeling a little better. I had my first two sessions on physical therapy today and feel very lucky that the physical therapist my orthopedic sent me to knows all about RSD and is tailoring my treatment/therapy so as not to aggravate the RSD. Wow...that was a welcome surprise. He doesn't think I'm well enough to do any exercises at home and so far only had me do one exercise at my last appointment...the rest of the treatment has been heat and ultrasound. He says my shoulder needs to heal more before we can do anything more strenuous. I was feeling pretty rough after the last appointment...so I know I'm not ready for anything more yet. I've got two sessions next week so hopefully resting until then will let my shoulder heal enough to keep moving forward. I'm so bored I could scream...I really would be much happier if I could work right now but it's just not possible without damaging my shoulder more and making things worse. It is what it is...resting probably isn't a bad idea with the baby anyway.

Hope everyone else is doing well. I really am fine except for this latest thing with the doctor...and the infection...and the shoulder. I'm taking care of myself and doing what I need to heal up from things and plan ahead. Just needed to vent today.
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Old 10-24-2014, 05:58 PM #76
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I'm SO sorry! What a miserable experience.

I can completely understand why you are upset. The pregnancy and birth of your baby should be an exciting, happy time. Obviously with RSD in the mix it is going to be more stressful because of the unknown, but it seems like this doctor is making it worse

I wonder if there is a way you could call the hospital anesthesia department directly to try and get an appointment or at least talk to someone?
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Old 10-24-2014, 07:23 PM #77
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I might try that...for now I think I just need to let it go for a few days and keep from stressing myself out about it...we all know what stress does to the RSD...
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Old 10-24-2014, 10:26 PM #78
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After all the and moments and stormy time,I'm sure you will find the right person for you and your precious baby ,im having such of and time and I'm really don't want to stress you at all,my best wishes and prayers for soon an angel will appear and help you with all the sadness and struggles you had experienced , we all love you both and want the best .
Think and always keep your happy positive attitude and you'll see,things will change soon,your baby and you will be ok, our Lord Hands are holding you,keep the hope and faith at your side ,with love ,Jesika .
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Old 11-22-2014, 10:56 PM #79
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Well now...it's been a while since I updated and this one will be pretty quick because of a lot going on.

So...on Monday November 17th...I had my baby!!

Let's just say...absolutely nothing went as planned and it was a very surreal sort of day/experience. I ended up needing an emergency C-section after being at the hospital for only 6 hours or so...and I am still dealing with quite a bit of pain from it though hard to say at this point if it is more than normal since that was only 5 days ago.

Then on Wednesday...my baby had to be transferred to another hospital for a higher level of care than they could give at the hospital I delivered at to run a bunch of tests. Short version of this story is that everything at this point is completely fine and normal and we SHOULD be able to take her home on Monday.

Thursday I was still in the hospital and I ended up getting a blood transfusion because I lost a lot of blood during the C-Section and my CBC results were lower and lower every day.

Friday I was finally released from my hospital and was able to go visit my sweet baby girl at the other hospital. It's been one heck of a week...and it's going to be a long recovery period from what I can tell right now...but totally worth it when I look at my little one.

I want to post an update once everything has settled down with more detail on the exact experience and how my RSD was affected by the delivery/arrival of the baby...but wanted to get this quick update out there while I had the chance.
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Old 11-23-2014, 02:08 AM #80
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Congratulations and we are glad both of you are doing fine, thanks Lord. and hope your recovery be fast and rsd will stay away from you ,you need to enjoy your baby now.
Wish you days full of relief and pain free , get better soon !!!
Blessings to both ,took me a while ,I wanted to do something hand made for your daughter but rsd stopped me ,soon I will surprise you,
Gentle soft hugs for ninth ,with love Jesika .
Give your baby many kisses and hugs from all of us . We have a new niece !!!!:
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