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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 04-15-2010, 10:18 PM   #1
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amandalilly7 HB User
Unhappy help! i have rsd!

I have recently been diagnosed with RSD. I have had a hip problem (left hip) for more than two years. it started with a frayed ligament and because insurance wouldn't approve the surgery i went for two years with the problem getting worse. I eventually had surgery in march of this year. near the end however my hip started to lock and i would either have to lay still for hours until it unlocked or someone could come help me or i would fall. So i took a shower on my own one night and my hip locked and i took a spill half in the shower and half out. After that night my left foot started to swell twice its size and turn almost black. And the pain from it was unbelievable. I have never felt pain like this before. The burning pain, feeling like my foot is on fire and the sharp almost electric shocks that run threw it, is more than i can bear. After what seemed like a million and one tests done on my veins and artery's I was diagnosed with RSD.

Unfortunatly the pain management doctor that i had was not the nicest man in the world. I have a deep deep fear of needles and have to be sedated for any test that has a needle bigger than a butterfly needle. SO, I had 6 nerve shots done. Three before my surgery and three after. The surgery it self did not go well and i have to possibly go back in for another one, but the RSD flared worse after the surgery than it did before. It also spread up my left leg into my hip and left hand and has now started to affect my right foot.

With the nerve shots, i would normally get maybe a day of relief, ( after about three days of the pain and sweeling worse than before) but after the surgery nothing has seemed to work. The pain is getting worse and i am at a loss! I have two kids and am getting married in a year and i would just love my life back! I have tried accupuncture, nerve blocks,im on lyrica 400mgs a day and then pecodone 15mg 4 times a day and nothing is working! I am now seeing a new pain management doctor who has suggested that i consider a spinal cord stimulator. Im scared to death of this. Ive read the pros and cons of the device and they seem to be equal.

IF anyone can offer some sort of suggestion or help for me i would greatly appreciate it! I havent slept in months, maybe an hour or two a night if i am lucky, and to be honest its all taking a toll on my mental well being. Im am begining to become severly depressed and feel as if theres no hope for me. The pain is far to much for me to handle!

Even if someone could let me know that i am not alone in this fight. my family and friends are very supportive but they cannot understand the level of pain i am in a day. It exceds the 1-10 scale. My pain is at a constant 20 lol. i need help!!!! please. i really dont know where to turn.

 
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Old 04-16-2010, 12:49 AM   #2
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Join Date: Feb 2009
Location: Pacific Northwest
Posts: 321
harmony85 HB User
Re: help! i have rsd!

Amanda,

My heart goes out to you. I understand your fears,loss of self and not knowing where to turn. You have come to the right place and I welcome you with open arms. This disease can be very hard to deal with,not just because of the pain but because of the emotional issues that come with it. I know your pain and understand the frustration that you have. It is so hard to see new people come on here because I have been there and it makes my heart drop knowing that one more person is in our shoes. In a lot of cases people aren't diagnosed early just like you. With that it can be hard to get things "back to normal" but you can live a happy productive life and being here can really help. There are different treatments out there and I'm glad that from what it sounds you have got a PM doctor that knows of rsd. That is a big help. With any treatment or medication there will always be pros and cons,it all is up to you and what you think is best for your body and state of well being. I can not tell you enough that you have to be your own advocate with this disease. Do the research,be open with your doctors and don't be afraid to stand up and speak your mind even if that means going against what some people may want you to do.
I personally know several people and I'm good friends with a women who has the SCS. Every ones bodies react differently to different treatments but most of the time if you do well with the trial then it can be a great fit for you. I would personally do the research,never go in blinding with this. There are a lot of great people on here who can not only answer some questions,tell you different things that are out there or things they've tried. But we all can help with the emotional side too. We all have friends and family that can be supportive but it is hard for them to understand sometimes what we rsd'ers are really going through. There is a battle raging in our bodies,constantly on the edge of losing but we have to fight and fight it head on together.
Voice how you feel,never be afraid of complaining to much here,venting,crying,just being frustrated. It's okay and we all have been there,done that. There is hope. Stay strong and don't let this horrible disease make you hide in the shadows. Take control when you can,enjoy what you can and remember that when you can't it's not because you are lazy and just don't want to,it's because you have a disease that makes it where you can't and that's a big difference. Please feel free to ask anything,anything at all.The only stupid question is the one you don't ask. I'm glad that you have come here,I wish on different circumstances but welcome.
Take care and stay warm,
Deanne

 
Old 04-16-2010, 05:34 PM   #3
Senior Veteran
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Join Date: May 2002
Location: NY
Posts: 3,197
sharon1030 HB User
Smile Re: help! i have rsd!

Hi and welcome . As Deanne said, you are definitely not alone. We have a great little support group here and many people say how coming here has helped them to at the very least, not feel so alone with this. Also, as Deanne said, the fact that you were diagnosed relatively early is a good thing for you. They say the earlier you are diagnosed, the better your chances for remission.

I've had RSD for at least 24 years...got it when I was about 15. I've had a pain pump for the past 9 years which has helped me a lot. As Deanne said, it's good you have a good PM doc. Have you spoken to him/her about your treatment options?

Well, it's nice to meet you and I hope you like it here as much as we do.

Sharon

 
Old 04-17-2010, 11:55 PM   #4
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Join Date: Apr 2010
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amandalilly7 HB User
Unhappy Re: help! i have rsd! and then some...

thank you so much, both of you! knowing that there are people out there that are in similar shoes to what i am makes me feel better. Because i recently changed pain managment doctors i have not fully discussed my options yet. he has put me on percocet 15mg with out the acetominophen in it, as well as 400mg of lyrica daily and lidocine patches.. i have to say that with all i take thru out the day my pain might go down to a 9.5 from a 10 if i am lucky... i dont really know what to do with myself anymore. i am watching my mother, aunt and fiance raise my daughter because i am not able to do something as easy as a diaper change.. it puts me in a very low place.. dont get me wrong i still spend all my time with my little girl and my stepson but its the tasks that made me feel important that i can not do any more due to this disease. Changing diapers, making lunch, painting, sitting on the floor playing puzzles, helping with home work. I have no use of my left hand without the burning pain andthe electiric shock feeling that spread from my finger tips to my elbow, and sitiing standing, laying or walking for more than 5 min, or being in the same spot for more than 1o min almost kills me.. i know that i might not live pain free, but just to get the pain to a 6 or7 would be amazing!!!!

My doctor suggested that i look into the SCS. Frankly it terrifies me! but living on mass loads of medications dosent seem great either.. im intrested in the spinal pump.. id like to know more information about it if you could help me? what type of meds are in it? how much pain relief do you get?

Really anything would help me at this point!! lol i sound so desperate. well i am lol. i just feel defeated. i want to fight so bad but it dosent seem as though anything is working for me.

Last edited by amandalilly7; 04-17-2010 at 11:56 PM.

 
Old 04-18-2010, 04:21 PM   #5
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Join Date: Apr 2010
Posts: 2
It is me HB User
Re: help! i have rsd!

Quote:
Originally Posted by amandalilly7 View Post
I have recently been diagnosed with RSD. I have had a hip problem (left hip) for more than two years. it started with a frayed ligament and because insurance wouldn't approve the surgery i went for two years with the problem getting worse. I eventually had surgery in march of this year. near the end however my hip started to lock and i would either have to lay still for hours until it unlocked or someone could come help me or i would fall. So i took a shower on my own one night and my hip locked and i took a spill half in the shower and half out. After that night my left foot started to swell twice its size and turn almost black. And the pain from it was unbelievable. I have never felt pain like this before. The burning pain, feeling like my foot is on fire and the sharp almost electric shocks that run threw it, is more than i can bear. After what seemed like a million and one tests done on my veins and artery's I was diagnosed with RSD.

Unfortunatly the pain management doctor that i had was not the nicest man in the world. I have a deep deep fear of needles and have to be sedated for any test that has a needle bigger than a butterfly needle. SO, I had 6 nerve shots done. Three before my surgery and three after. The surgery it self did not go well and i have to possibly go back in for another one, but the RSD flared worse after the surgery than it did before. It also spread up my left leg into my hip and left hand and has now started to affect my right foot.

With the nerve shots, i would normally get maybe a day of relief, ( after about three days of the pain and sweeling worse than before) but after the surgery nothing has seemed to work. The pain is getting worse and i am at a loss! I have two kids and am getting married in a year and i would just love my life back! I have tried accupuncture, nerve blocks,im on lyrica 400mgs a day and then pecodone 15mg 4 times a day and nothing is working! I am now seeing a new pain management doctor who has suggested that i consider a spinal cord stimulator. Im scared to death of this. Ive read the pros and cons of the device and they seem to be equal.

IF anyone can offer some sort of suggestion or help for me i would greatly appreciate it! I havent slept in months, maybe an hour or two a night if i am lucky, and to be honest its all taking a toll on my mental well being. Im am begining to become severly depressed and feel as if theres no hope for me. The pain is far to much for me to handle!

Even if someone could let me know that i am not alone in this fight. my family and friends are very supportive but they cannot understand the level of pain i am in a day. It exceds the 1-10 scale. My pain is at a constant 20 lol. i need help!!!! please. i really dont know where to turn.
I feel for you. My daughter has RSD and she found tremendous relief from the spinal cord stimulator, she now is having other issues, and SCS needs to be removed. We find our peace and hope in the Lord Jesus. If we did not have Jesus in our life I dont know how we could do it.

 
Old 04-18-2010, 04:51 PM   #6
Senior Veteran
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Join Date: May 2002
Location: NY
Posts: 3,197
sharon1030 HB User
Smile Re: help! i have rsd!

Hi Amanda,

Living with RSD is definitely a tough road.

As far as the pump goes...I have morphine and bupivicaine in mine. Before I got the pump, I was taking 600 mgs of MS Contin per day which, besides other side effects, caused me to be extremely depressed. The meds that are in the pump go directly to the spinal canal so they don't go through your system like meds you take orally do. So, not too many side effects. The major difference for me was feeling happy again. I didn't even know I was depressed until I got my pump and became happy. Only then did I realize how sad I really was.

I had my first pump in for 8 years. They say that normally, the battery lasts between 2 and 5 years, depending on how much medication you use. My battery didn't poop out. What happened is the catheter moved. My personal theory on that is I'd started watching my 4 year old niece and 2 year old nephew a few days per week last year and I think the catheter moved because of having to lift my nephew. Don't know for sure, but I think that makes sense, especially since I'd had it for 8 years and it was fine.

I hope that helps you a bit. I can only think of two of us on here who have a pump so not that many different perspectives for you to read. The other person's wife comes on here. He hasn't done as well with his pump, sadly.

Good luck and feel free to ask any other questions you might have.

Sharon

 
Old 04-19-2010, 09:07 PM   #7
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Join Date: Feb 2009
Location: Pacific Northwest
Posts: 321
harmony85 HB User
Re: help! i have rsd! and then some...

Amanda,

You are more that welcome for the help. We've all been down that road of fear of what is happening to your body and the frustration of the things you feel you are losing. That's why it is important to have a strong support system.
I completely understand your fear of the scs. The best thing I can tell you is to do your research and do what you feel is right for you. You have to be your own advocate and stand up for what you want. This is your body and your quality of life. Be open with your doctor about your options.
There are quite a few different kinds of pain pumps. It all depends on what kind you have with what meds go with that certain pump. Some of the more common ones when it comes to pain is morphine,percoset,methidone and other opids. like that. For muscle pain pumps there are ones like baclofen and I know I have the spelling wrong but bup-ivane. That's what it sounds like anyway. The best thing is to ask your doc about different ones,there are also lots of spine and pain sites that tell about them. I'd give them to you but unfortunately we can put websites in
If you need any help please ask away. Feel free to vent. I've had rsd for about 3 years now. I'm 24,turning 25 this summer. I'm married and I know the toll this disease can take on families,spouses and yourself. There are ways to live a happy life even when in pain,you just have to remember to enjoy every moment because tomorrow you may not be able to do anything. If you need any advice please ask,there are ways to change everyday life so that we can feel self worth and have rsd.
Take care and stay warm,
Deanne

 
Old 05-14-2010, 08:58 PM   #8
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Join Date: May 2010
Posts: 1
cyndi01 HB User
Re: help! i have rsd!

I am sorry to hear what happened to you. I have a sister in law that had the stimulator surgery- they started with the temporary stimulator which gave her relief and then a week later her doctors went to put in the perm stimulator- during the surgery she was paralized for about 2 hours due to the c5 c6 neck bones having to be broken in order to put the stimulator in. Luckily the doctors got her back to her use of her legs and arms. After coming home from this surgery- she began immediately having pain in her neck from the surgery and her RSD that was in both of her hands now has moved to her neck, and both legs. She is in her mid 30's and has 3 young children and is in constant unbearable pain- at one point she was taking on average 98 pain and nerve medications with no success. Needless to say, if she would have known then what she knows now she WOULD NOT HAVE HAD THE SURGERY,
I therefore would suggest you research your doctors and the statistics on what your chances are if you have the surgery.

I have not written everything that my sister in law and family has gone thru for it would be a book-

I hope that this helps you somewhat- good luck

 
Old 05-29-2010, 09:50 AM   #9
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Join Date: May 2010
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bob the builder HB User
Re: help! i have rsd!

Quote:
Originally Posted by amandalilly7 View Post
I have recently been diagnosed with RSD. I have had a hip problem (left hip) for more than two years. it started with a frayed ligament and because insurance wouldn't approve the surgery i went for two years with the problem getting worse. I eventually had surgery in march of this year. near the end however my hip started to lock and i would either have to lay still for hours until it unlocked or someone could come help me or i would fall. So i took a shower on my own one night and my hip locked and i took a spill half in the shower and half out. After that night my left foot started to swell twice its size and turn almost black. And the pain from it was unbelievable. I have never felt pain like this before. The burning pain, feeling like my foot is on fire and the sharp almost electric shocks that run threw it, is more than i can bear. After what seemed like a million and one tests done on my veins and artery's I was diagnosed with RSD.

Unfortunatly the pain management doctor that i had was not the nicest man in the world. I have a deep deep fear of needles and have to be sedated for any test that has a needle bigger than a butterfly needle. SO, I had 6 nerve shots done. Three before my surgery and three after. The surgery it self did not go well and i have to possibly go back in for another one, but the RSD flared worse after the surgery than it did before. It also spread up my left leg into my hip and left hand and has now started to affect my right foot.

With the nerve shots, i would normally get maybe a day of relief, ( after about three days of the pain and sweeling worse than before) but after the surgery nothing has seemed to work. The pain is getting worse and i am at a loss! I have two kids and am getting married in a year and i would just love my life back! I have tried accupuncture, nerve blocks,im on lyrica 400mgs a day and then pecodone 15mg 4 times a day and nothing is working! I am now seeing a new pain management doctor who has suggested that i consider a spinal cord stimulator. Im scared to death of this. Ive read the pros and cons of the device and they seem to be equal.

IF anyone can offer some sort of suggestion or help for me i would greatly appreciate it! I havent slept in months, maybe an hour or two a night if i am lucky, and to be honest its all taking a toll on my mental well being. Im am begining to become severly depressed and feel as if theres no hope for me. The pain is far to much for me to handle!

Even if someone could let me know that i am not alone in this fight. my family and friends are very supportive but they cannot understand the level of pain i am in a day. It exceds the 1-10 scale. My pain is at a constant 20 lol. i need help!!!! please. i really dont know where to turn.
hey I feel your pain i have been dealing with rsd for 15 years now and take no medications or use any devices... either my body has adapted to the pain or i have learned to block it out... I finally realized no matter what it is going to hurt so you will just have to learn to shove it to the back of your head do not let it become your focus point.... also very important to stretch the infected areas this does seem to illiviate some pain although never completely .. I hope this is nopt discouraging but helpful

 
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