[VanessaNicole]

Hi, I was just wondering if anyone has has issues getting pregnant after being diagnosed with RSD? I have had RSD for almost 4 years now. Before the surgery that caused it, I had a normal mentrual cycle. Afterwards My cycles started to become irregular. I would go for months without it then get it for a month straight. Then it would just be sparatic, here and there. Then this past year it has been horrible. I had it for 6 months straight and finally went on birth control to stop it. I am a smoker and blood clot issues run in my family and I always had stayed away from birth control pills. I have stopped taking them but as soon as I did it started up again. My gyno thinks I am having anovulatory cycles. My body is not ovulating at all. She said it is something in the brain sending wrong signals. The exact thing that is happening with RSD. I am just wondering if anyone is having similar issues? My pain doc has not heard of anyother person having this issue. So he is not sure whether or not it is caused by the RSD. I am not currently trying to have a child. I know my husband wants one one day and I am worried I wont be able to now. Im just hoping someone has info that can help me.

[lorigood243]

Hi Vanessa

Yes i have female issues...but i dont want to be pregnant...here is my story...

I had gallbladder surgery at age 42 and that instantly began my RSD.
then 2 years later i had another surgery where they cut me hip to hip to remove all the swollen tissue on my abdomen in hopes i would get better. w didnt know at that time that i had RSD yet.

After the second surgery age 44 my whole body went crazy. My period stopped instantly never to return. I went to my GYN several times because she was worried that one day i would hemorrhage. the doctor ran all the tests and she said you arent in menopause...she gave me the shots to make my period start and it never would. Im 48 now and its never come back since it stopped. other things that happened, i got high blood pressure, became diabetic, have diarrhea every day. sleep apnea, high cholesterol.
all of those things happened within 2 weks of the surgery, so i just thought i would share my whole picture. now 4 years later all the swelling came back with vengeance...85lbs...and im miserable and dont know what to do. so far the doctors say there isnt anything to take the swelling off. im looking for yet again, another new doctor.
blessings
Lori

Originally Posted by VanessaNicole

Hi, I was just wondering if anyone has has issues getting pregnant after being diagnosed with RSD? I have had RSD for almost 4 years now. Before the surgery that caused it, I had a normal mentrual cycle. Afterwards My cycles started to become irregular. I would go for months without it then get it for a month straight. Then it would just be sparatic, here and there. Then this past year it has been horrible. I had it for 6 months straight and finally went on birth control to stop it. I am a smoker and blood clot issues run in my family and I always had stayed away from birth control pills. I have stopped taking them but as soon as I did it started up again. My gyno thinks I am having anovulatory cycles. My body is not ovulating at all. She said it is something in the brain sending wrong signals. The exact thing that is happening with RSD. I am just wondering if anyone is having similar issues? My pain doc has not heard of anyother person having this issue. So he is not sure whether or not it is caused by the RSD. I am not currently trying to have a child. I know my husband wants one one day and I am worried I wont be able to now. Im just hoping someone has info that can help me.

[Swatgen27]

Hi,
I'm 29 years old and have CRPS in my lower limbs (from hips to toes). I also would like to have a baby and am hoping to start trying to concieve in September of this year.
Post CRPS my cycle did change. My cycle is now a 5 week cycle vs the normal 4 weeks. I have experienced my cycle skipping a month but this has only happened once.
I have tried to find research on bearing children with CRPS but have not found a lot of information on the subject so I was happy to hear that you are also trying.
I have tried every treatment under the sun to get off medications but nothing lasted so it appears that I will be trying to concieve while on medications. I worry about the baby being exposed to my medication regime. How far into the process are you? Are you also taking medications while trying to conceive?
I have briefly discussed this with my old doctor but recently changed physicians a month ago so I hope he to will be willing to help me through the whole process.
My husband is 32 and he also really wants a child so I'm hoping that I will be able to fulfill his dreams. I looked into adoption but found it to be extremely expensive and a really long process so Im going to try to conceive and then if that doesn't work I will pursue adoption or a seragacy arrangement. Thank you for your post and if any of my questions are to personal or make you feel uncomfortable then I apologize in advance.
Sarah

[VanessaNicole]

Originally Posted by Swatgen27

Hi,
I'm 29 years old and have CRPS in my lower limbs (from hips to toes). I also would like to have a baby and am hoping to start trying to concieve in September of this year.
Post CRPS my cycle did change. My cycle is now a 5 week cycle vs the normal 4 weeks. I have experienced my cycle skipping a month but this has only happened once.
I have tried to find research on bearing children with CRPS but have not found a lot of information on the subject so I was happy to hear that you are also trying.
I have tried every treatment under the sun to get off medications but nothing lasted so it appears that I will be trying to concieve while on medications. I worry about the baby being exposed to my medication regime. How far into the process are you? Are you also taking medications while trying to conceive?
I have briefly discussed this with my old doctor but recently changed physicians a month ago so I hope he to will be willing to help me through the whole process.
My husband is 32 and he also really wants a child so I'm hoping that I will be able to fulfill his dreams. I looked into adoption but found it to be extremely expensive and a really long process so Im going to try to conceive and then if that doesn't work I will pursue adoption or a seragacy arrangement. Thank you for your post and if any of my questions are to personal or make you feel uncomfortable then I apologize in advance.
Sarah

I wrote this whole darn response and it didnt post! I am so upset! I will write the short version and maybe we can exchange e-mails and talk because it seems like we have a lot in common and can help eachother! I am 26 years old(had CRPS since I was 23) my husband is almost 29. We both want kids real bad. I currently take neurontin and norco. Also get sympathetic nerve block shots every 8 weeks. Once I decide to get pregnant(if I can) I will stop taking meds completely. Doctor said the neurontin can cause major harm to the child and I will have to let him know if I decide to have a kid. My husband wants a kid but knows what will happen when I stop taking the meds, the attacks will come a lot more often and he doesnt think he can watch me go through that
again. I still get attacks but they dont come every other week like before. I get a bad one like once a month. I am in constant pain but that pain I learn to live with. Its amazing how people can learn to adapt to things. I have good and bad days, like everyone does. Mine are just different from everyone I know. My life revolves around my foot. Its strange. I never thought something like this would happen to me. I was scared when it did but I learned to adapt. I have my depressed day, why did this happen to me days. Then I have the accepting days. Its hard, but I already know im stuck with it so why dwell on it. I am terrified to stop the medication though! But I really want to be a mommy. So I am willing to do it.

What kind of meds are you on? I would seriously consider whether or not to take them while pregnant. Find out how they will affect your baby. I have also looked for stuff online about getting pregnant with CRPS but have found nothing. I guess we will have to learn from eachother! I am determined to do it. 9 months of an attack will be worth it. As soon as the baby is out I am back on the meds tho! =O) Thats if I can even get pregnant. I am praying! Bought an ovulation kit to find out if I even ovulate. I am praying the gyno is wrong! We will see! If you would like to e-mail let meI am going through and wants to have a baby like I do! BTW, We also have decided we wanted to start trying in August/September!

[Chemar]

Originally Posted by VanessaNicole

I wrote this whole darn response and it didnt post! I am so upset!

Hi Vanessa
the system automatically logs you out after a default period. When writing a very long reply, the system sees you as "inactive" so logs you out. Best way to avoid this is to check the "remember me" box when you log in as then you remain logged in until you actively log out

hope that helps

[VanessaNicole]

Originally Posted by lorigood243

Hi Vanessa

Yes i have female issues...but i dont want to be pregnant...here is my story...

I had gallbladder surgery at age 42 and that instantly began my RSD.
then 2 years later i had another surgery where they cut me hip to hip to remove all the swollen tissue on my abdomen in hopes i would get better. w didnt know at that time that i had RSD yet.

After the second surgery age 44 my whole body went crazy. My period stopped instantly never to return. I went to my GYN several times because she was worried that one day i would hemorrhage. the doctor ran all the tests and she said you arent in menopause...she gave me the shots to make my period start and it never would. Im 48 now and its never come back since it stopped. other things that happened, i got high blood pressure, became diabetic, have diarrhea every day. sleep apnea, high cholesterol.
all of those things happened within 2 weks of the surgery, so i just thought i would share my whole picture. now 4 years later all the swelling came back with vengeance...85lbs...and im miserable and dont know what to do. so far the doctors say there isnt anything to take the swelling off. im looking for yet again, another new doctor.
blessings
Lori

Hi Lori! Thanks for responding! I am sorry to hear about your attack. I wish there was something I could do. When I had my first attack, Which lasted 4 weeks, I was hospitalized at the end of the 4 weeks and pumped full of antibiotic and prednisone. I was in the hospital for 3 full days. It helped the swelling and about half the pain went away. Which I was grateful. I thought that eventually it would disappear completely but it never did. Took me years and 20 something doctors to finally figure out what was wrong with me. My period was actually the last thing on my mind until recently. Only because I would like to have a baby. I hope you were able to have children before this happened to you. This is a terrible condition and it can destroy a persons life if they let it. Its hard. Everyday is a struggle and I def. have my good and bad days. What state do you live in? If you happen to live in illinois I see a wonderful doctor here in Chicago. I live about 65 miles from Chicago but the drive to see him is worth it because he is the best doctor ever! He really cares about his patients. He has really helped me over the past year and a half. I still have attacks but not nearly as often since I started the proper treatment. I take neurontin, norco and also get spinal sympathetic nerve block shots every 8 weeks. It has helped a lot. I went from getting a horrificly painful attack every two weeks to about one a month and they only last a few days now. I have learned to deal with them. I still have constant pain but have managed to live with it. I dont really have a choice! My life now revolves around my foot but I can handle it better now. Are you looking for a pain management doctor? That is what you need. Are you on medications? Do not let these doctors turn you away. They can help. Go to the emergency room and make them help you. They cannot turn you away. I know how it is when this swelling attacks come. Its horrific pain. I lay there and scream and cry and i have even tried to cut off my foot with a knife just to stop the pain! (I was luckily stopped by my husband!) The pain can get so bad you dont know what your doing! Thank god he was there to stop me. The doctor said that we really are not in pain, our brains are telling us we are in pain and we react accordingly. This is such a horrible condition. I am curious, do you get spasms ever? Like a jolt of electricity going through your body that makes you shake uncontrolably for a few seconds? Thats painful? I have been getting them from the begining but only like once a month. In the past 6 months they have been coming more and more frequent. I get them atleast 6 times a day. I was just wondering if you experience the same thing? I am not sure if it is normal or I have someother issue. Please let me know if there is anything I can do to help you find a doctor who can properly treat you. There is no reason for you to go through attacks like this. My longest is 4 weeks. That was the second worst four weeks of my life. No one should go through that long of an attack. If they are then the doctors are not properly treating you. I had finally had enough and made them admit me and do what they had to to treat me. Just because these doctors dont know what it is doesnt mean they can push us out the door. They need to get someone there who can. I will never let a doctor brush me off again. If I ever have to go to the ER for this again you bet I will make them admit and treat me. If they dont know how then they will have to find someone who does. Like I said, Please let me know if I can help you in anyway. It breaks my heart to see someone brushed aside. No one deserves that and to be left to suffer. There is no excuse for it.

[VanessaNicole]

Originally Posted by Chemar

Hi Vanessa
the system automatically logs you out after a default period. When writing a very long reply, the system sees you as "inactive" so logs you out. Best way to avoid this is to check the "remember me" box when you log in as then you remain logged in until you actively log out

hope that helps

I did not know that! Thanks for letting me know! I was so upset it did that. You can tell im new to this! Im so happy I found a place where I can talk to people who truely understand what i am going through. =O)

[hannah1234]

I have been having major problems, and was about to post something on this. I am on birth control, but am bleeding when I am not supposed to. My obgyn has no idea and wants me to wait it out for a few more days... Heat is the only thing that helps the pain... but I just had my hormones corrected over the past 6 months, and you would think it would be back to normal now. Its frustrating.

[VanessaNicole]

Originally Posted by hannah1234

I have been having major problems, and was about to post something on this. I am on birth control, but am bleeding when I am not supposed to. My obgyn has no idea and wants me to wait it out for a few more days... Heat is the only thing that helps the pain... but I just had my hormones corrected over the past 6 months, and you would think it would be back to normal now. Its frustrating.

I have taken numerous medications that did not help with my bleeding prior to birth control. I would def. get a second opinion on whether you should continue to take the birth control. I only took birth control to stop my bleeding and that was only for a week. It stopped it but then it started up again. I get terrible cramps also. The ones where you cant move. And it lasts the entire cycle. After the birth control I have got back onto a kind of "cycle." I get it for a week, ends for a week, get it again for a week, ends for 2 weeks and starts all over again. But when I do have it, it is very heavy and painful. I really believe these issues are caused by the crps. I was always normal until this happened to me. I have looked and looked for anything related to this subject and cannot find a thing. I knew I couldnt be the only woman experiencing these same kinds of issues. I never bothered to mention this to my gyno because she had no idea what exactly I had. She never heard of it. Good thing I am not shy and was able to mention it to my pain doc. He said he will look into it but I doubt he will find anything. I just do not think these kinds of "symptoms" have been mentioned. I know it is the cause. I never had any issues prior to my surgery. Then nothing but problems after. Is that the same for you? It really upsets me bacause in early 2008, a few months after this I got crps(didnt know I had it at the time) I went to the doc that did the surgery and when my current doc requested all my med records he saw that the Dr. wrote he thought I had CRPS. He never told me! I went years without knowing. Now I may not be able to have a child because of him. If I would have known back then I would have sought help for my issues when things started to change. I just thought it was from stress. My husband and I wanted kids but we wanted to get me "healed" first. Little did we know i am stuck for life with this terrible condition. Actually, my doc said if he would have sent me to someone who knew how to treat CRPS then I most likely would have been cured. Instead he kept it to himself. Makes me mad. I really hope you get better. like I said, I would def. seek another opinion on whether you should keep taking the birth control. It doesnt sound right. I never took it because I am a smoker and blood clots run in my family(lost my dad in 2006 to one) So, i steer clear of it. But my 4 sister all take it and have no problems with it. It could be from the CRPS but I would check it out.

[hannah1234]

Thanks for the reply!!! I have always had problems since I have been 13-14, i have a history of ovarian cysts getting out of control big and them having to surgically remove them. They found small polyps in my utereus as well about 3 years ago....

Now after I got rsd over 3 years ago, it just got worse. I actually didnt start for over a year and a half, and i knew that just was not right (while i selfishly completely enjoyed it never having cramps never having the inconvinenience of this)... I knew I had to get it checked out. I doctor shopped for years when i was 15 for my OB and found the one now and he is really thourough, and I get blood tests yearly of my hormones to make sure they are right. So back to when I didnt start for a year and a half, i went to see him, and they did blood work and my levels were SO wack, my doctor had never seen it. So he put me on birth control to level my hormones out and I got them checked this month and they are normal!!! halllelllujah! Having a period flares me up so much, and I am trying to only have a period maybe every 3-4 months so that doesnt happen. Also, when I am not on birth control, I get ovarian cysts to the point they are so big they burst or I need them surgically removed. SO I have to be on birth control pretty much infinately. I was on it was I was 14 for cysts... got off of it.... had cyts... got back on it was fine... got off it got messed up... bottom line be on it or have problems.

But since i got RSD i notice I am having considerably more problems... makes it frustrating. Nothing is "published" about it... but who cares? there are so many of us that are in the same boat and it helps to know we arent alone!!!

If this doesnt resolve within the next 2 months, I will go get a second opinion. I hope you get everything resolved as well.... its so frustrating on top of dealing with the RSD!!!