Needs some opinions and answers.
 

Hi
I am all new to this forum.
I was diagnosis with RSD almost a year ago. and it all began with fracturing my right ankle.

I tried 5 consecutive sympathetic nerve blocks and it all failed. it was good for few days at first and then it decreased the effect down to only good for 1 hr when the numbing meds were in my system. It all made me more depressed when it failed.:( I have 3 beautiful children and they think i am boring since i cant do anything with them actively anymore. I am limping around (cant walk normal) i cannot drive because i do not have motion on my ankles anymore.
So my previous dr refer me to big hospital and my new dr suggested me either pain med pump or the SCS. i never heard about either one of them. ( not that i knew what RSD was before either)
just thinking about something will be in my body for rest of my life gave me little unease. but if thats what it takes i am willing to do it. but before i decide i want to know how the others' experience.

Plus is there any advice on how to take care of my foot better at home? my kids are little and sometime they accidentally tap my foot and i will be burst in tears and my foot will be more swollen than it was for couple days. (my foot is swollen every day but i do have good days and bad days):(. i just dont know where else i can go and talk to anymore. my previous dr didnt give me any much info that was helpful than what i read online.:mad:

thank you so much for reading this:)

Hi swe3 - welcome to the group. Sorry CRPS has showed up in your world. As a parent of 3 children, that is even more challenging. There are a few basic things we all have learned here that you should know: 1, never never , never apply ice to the CRPS leg. 2. Warm soaks in an unperfumed epsom salt (magnesium) is helpful 3. Find a good physical therapist who will gently keel you mobile and teach you how to maintain range of motion in your foot and ankle 4. Find a good pain management doc to give you sufficient pain control. 5. Read as much as you can to get educated about CRPS6. Lots of friendly support is always available on this forum. Wishing you wellness - Lottie

thank you so much for fast reply. i didnt know anything about epsom salt. doesnt that hurt when your skin touches? because taking shower and water hitting the spot sometime irritates my foot. but i definitely try it.
two most hard things are the one i mention, care for my kids. and second is the support around me. my husband takes really good care of me but he is away alot due to work and my mother in laws doesnt believe there are such thing is rsd and she doesnt think that the pain will be that much as my husband described to her. she lives near by our house and hardly i can ask for her help due to that reason when my hubby is away. which gives me more stress. my husband is in the military and we move alot so i do not have any friends around here let alone my own parents, who lives in different country.
it is very hard and i know it is very hard on my husband who has to take care of me and the kids alone with his duty.
i think its harder for me having rsd right now because not just physically but also mentally. (just thought i am alone with this)
your reply gives me little ease knowing i have some way to contact the others who can understand what i am going through.
thank you so much.:winky:

Hi swe3tkisa! Welcome to NT. So sorry that you are now having to deal with this monster. You have come to the right place for info and support. You should check out the SCS and Pain Pump Forum on here too, you will find a lot of info there. There are many with RSD that have had success with SCS's and/or pain pumps. I have had RSD for 23 1/2 years and had two SCS's implanted in June 2011 (thoracic and cervical) and then had them removed in Jan 2014. They helped me tremendously for the first 1 1/2 years, they actually gave me the use of my hands back and made me able to work another 1 1/2 years. They also helped with the range of motion in my arm and cut down the sensitivity everywhere. I had some issues develop with my SCS's and the effectiveness wore off, so I had them removed. My dr recommeded a pain pump also, but I am allergic to pretty much everything so we didn't know what they could safely put in it. I would just recommend seeing a very knowledgeable dr and do your research, you have to be comfortable with whatever you decide.

As far as your mother-in-law goes, try giving her some information to read. Sometimes that helps. Check out this letter to loved ones from rsdhope.org http://www.rsdhope.org/letter-to-fam...-patients.html and also the McGill Pain Index http://tuum-est.com/MEDICALJUSTICE/McGill.html. My husband thinks this pain index is a real eye opener. Some people will never get it no matter how hard you try, at least this is something short that she will hopefully look at and help. These two items have helped me the most with getting family/friends to understand a little better. I am happy that your husband is so supportive, that is rare and wonderful...I have one of them too :)

There is a lot of great info on rsdhope.org and rsds.org. And Lottie gave you some great advice too!

I wish you the best!
Nanc
:hug:

Hi and welcome to the group. This is a wonderful place of information and friends who have been through a lot of the same together.
There is a sub category link to this for scs and pain pumps that has all kinds of information from people who have gotten them, who are getting them, success and unsuccessful treatments. Please check that out prior to any further treatment. The next step is huge and life changing so make sure you have all the information.

Ask questions that's all I can tell you. Don't be shy.

Hi Swe3tkisa: you are welcome. We are all here to listen to and help each other. The epsom salt (magnesium) can be found in any drugstore, Walmart, Target. Only buy unperfumed epsom salt and put about 1 cup into a tub full of warm water and soak in it. Many of us get comfort from it.

~ Lottie

Hi SWE3...

Welcome, You are not alone. Sorry you have to deal with this beast, and coming here, asking questions and getting help, support and tips is an ideal way to go about it. It is hard for others to understand how we feel and no one but someone with RSD can totally relate. Having a supportive spouse is great, and also a support group. We all need help at times, and in the beginning it can seem overwhelming. Just take it slowly, and try not to get overwhelmed which is really easy to do.

I saw other people gave you good advice which is great. Find a few good websites, the main ones, and learn what you can. Also give yourself time to deal and rest and just be in the process. You can't rush it, and I firmly believe that medicine and treatments are getting better or at least they will, and that we will have more and better options along the way. They have come a long way from 25 years ago, but there is long way to go. One step at a time, progress is progress. I would suggest a topical cream for burning and nerves, maybe a combo cream. I would do it through a knowledgable doctor not a regular drug store. They may topicals that can help a little....

hugs

Hi mad welcome to Nt, I had an scs been successful with the neuro pain relief but develop problems in the opposite limb were the battery was implanted, is a long ride since last year surgery,the original, a year later finally got approve to repositioned in my abdomen,work better but still only neuro pain no bone pain,suck, I never knew that before , now my good leg is also presenting the typical morrow effects on rsd , same feeling,same pain,without any reason, upper buttuck pain ,lower back is been added to my whole picture.
Takes time to recover from scs surgery, you have to follow the exact dr recommendations otherwise your wasting your time,is hard when you are to active, first week a lot of pain, unable to take shower and after you ok to do it, you need help with showers, wash your hair, not been able to tide you own shoes, can't use washer machine,drier because of the bending, you lead wires might came of ,also reaching stuff from high will make you to stretch you arm and pull the wire, bending is a big no no for the first 6 weeks, my pm dr said is ok by my ortho recommended time off from work at least 3 months for full recovery, my is still in recovering after a second surgery and also an unexpected gallbladder surgery two months ago.
Scs is not for everyone,consider that option your last one, is not what you expect and get used to is almost impossible, maybe other people had better results ,my work good , but game additional issues and back me up for a year, good luck In any decision you take but keep all pros and cons on any medical treatment and procedure, in my case I needs to be at least at certain percent to be able to perform at work but still did not happen,keep that also in mind, best wishes and let us know who everything went , blessings from Jesika ,:grouphug:
Any question don't hesitate to ask, I. Here to help.

Swe3 - for your foot you could ask doc to prescribe Voltaren Gel. Its a a non-steroidal ant- inflammatory drug you put on the skin.
Remember to get with a physical therapist to maintain range of motion and muscle tone n using safe and gentle exercises. If you have access to a pool that would be great. Wishing you wellness- Lottie