[Jenn39]

Left leg RSD since october for 5 months. Have believed this was diagnosis after all vascular studies and arthroscopy came back normal. My leg feels like I am standing in ice water. Burning pain, worse behind knee. Driving can be unbearable because of pressure sitting. Also worse at night, standing in one spot (both of my legs swell up..noticing Atrophy of left leg already. My massage therapist noticed coldness and freaked out! We all thought was vascular but after numerous tests and seeing vascular surgeon...not. Bone scan was what finally showed issue with marked decrease flow due to RSD and vascular spasm.
Anyways I am having sympathetic block next week. I am scared, alone and overwhelmed. Have 5 yo and hard to do all things she needs and "wants". I am so blessed to have her just feel like crying all time. Have other medical issues also so I am constantly at a doc office. Hubby out of town tryin find work and not very supportive right now. Please someone tell me your stories that may be like mine. Thanks

[catra121]

I am very sorry to hear that you have RSD. Your story sounds very similar to mine in the beginning...I was diagnosed at about 6 months after being bounced around from one doc to the next. The sympathetic blocks are a common first step. They didn't help me but a lot of people do get relief from them.

The important thing (in my opinion) is to make sure that you push yourself to keep moving and to get into physical therapy ASAP (if you are not already in it). Believe me...I truly understand how painful it is but if you immobilize or try to protect your RSD limbs then they will only continue to get worse (if you can even imagine that). Even if you can only move a little right now...it is important to do what you can. And avoid ice at all costs...that is very bad for RSD and I know in my case the doctors had me icing for a long time until I got diagnosed with RSD and I think that is part of what made me so bad so fast.

But I just want you to know that things can and will get better. You have a little girl and that will hopefully be great motivation to keep you fighting. I hope the blocks work for you...but if they don't just realize that there are other treatments out there to try. I highly recommend trying a TENS unit (especially if you are in physical therapy) and if that works then asking the doctor to write a script for you to get a portable one. That was the main reason I was able to make it through physical therapy this time around. Again...doesn't work for everyone but it is worth a shot.

And tDCS is a newer treatment out there that people have had success with...and it is not invasive and has little to no side effects. There's a long thread about it on here that I highly recommend reading from the first post to the last. It has filled me with a lot of hope and I can only hope it will do the same for you. RSD is a horrible thing to be diagnosed with but it doesn't have to mean that your life is over.

Good luck...and feel free to ask any questions or vent...whatever you need. This site is flled with wonderful, caring people.

[Jenn39]

Originally Posted by catra121

I am very sorry to hear that you have RSD. Your story sounds very similar to mine in the beginning...I was diagnosed at about 6 months after being bounced around from one doc to the next. The sympathetic blocks are a common first step. They didn't help me but a lot of people do get relief from them.

The important thing (in my opinion) is to make sure that you push yourself to keep moving and to get into physical therapy ASAP (if you are not already in it). Believe me...I truly understand how painful it is but if you immobilize or try to protect your RSD limbs then they will only continue to get worse (if you can even imagine that). Even if you can only move a little right now...it is important to do what you can. And avoid ice at all costs...that is very bad for RSD and I know in my case the doctors had me icing for a long time until I got diagnosed with RSD and I think that is part of what made me so bad so fast.

But I just want you to know that things can and will get better. You have a little girl and that will hopefully be great motivation to keep you fighting. I hope the blocks work for you...but if they don't just realize that there are other treatments out there to try. I highly recommend trying a TENS unit (especially if you are in physical therapy) and if that works then asking the doctor to write a script for you to get a portable one. That was the main reason I was able to make it through physical therapy this time around. Again...doesn't work for everyone but it is worth a shot.

And tDCS is a newer treatment out there that people have had success with...and it is not invasive and has little to no side effects. There's a long thread about it on here that I highly recommend reading from the first post to the last. It has filled me with a lot of hope and I can only hope it will do the same for you. RSD is a horrible thing to be diagnosed with but it doesn't have to mean that your life is over.

Good luck...and feel free to ask any questions or vent...whatever you need. This site is flled with wonderful, caring people.

Thanks for info.. Ice has hurt because it makes area "burn" more but hadn't heard that shouldnt use so thanks for that info..I see many talk about lidocaine patches and I tried those (had some from my back) and it made it more painful too. Tried tens unit at chiropractor several times in november and didn't seem help but I will try again, since so many people have had relief from. Have tried numerous times with back and electrical "shock" that it makes made pain worse..
I am worried that the recent knee surgery will make RSD worse..

[daniella]

Hi ICE is a big no for rsd and for many like myself I can't tolerate massage either. It is very key to work with people who deal a lot with RSD. Is the person doing the block knowledgable about RSD. Have you started any meds like neurontin etc? If not I would look into that as well. It is important to start with least invasive and work your way to more. Some doctors will push $ treatments that may not help or could even make things worse so it is important to really weigh the pros and cons,try least invasive,and research.
For some people tens does help but for me again and I have heard others can't tolerate it. So it is about what works for you and some is trial and error.
Have you tried epsom salt baths or bath in general? What about pool therapy to keep moving?
I can't imagine how hard it is being a mom with rsd. I give everyone credit who is. I am sorry your husband is not supportive. Can you guys go to therapy and can you on your own? Getting assistance mentally is important with this. It does not take away the physical but can help one cope with it.
Hope you feel better

[catra121]

Originally Posted by Jenn39

Thanks for info.. Ice has hurt because it makes area "burn" more but hadn't heard that shouldnt use so thanks for that info..I see many talk about lidocaine patches and I tried those (had some from my back) and it made it more painful too. Tried tens unit at chiropractor several times in november and didn't seem help but I will try again, since so many people have had relief from. Have tried numerous times with back and electrical "shock" that it makes made pain worse..
I am worried that the recent knee surgery will make RSD worse..

Sometimes with the TENS unit it is about finding the right placement of the electrodes. As long as it is not causing more pain I would suggest trying this again. I think I was lucky that the physical therapists got the placement right for me in therapy and then when I got my own unit I was able to use the same locations for relief.

tDCS is not the same as electric shock...so that is still something that I would suggest looking into. It doesn't go on the RSD areas and has no history (to my knowledge) of making RSD pain worse. It's much cheaper than even what my copays/deductables were for even the lumbar sympathetic bocks that I got (only $300 total for all the equipment without insurance paying any of it). If you have tried all the other options then this is definitely worth a shot...especially before doing anything invasive.

I understand your worries about the knee surgery. ANY sort of trauma to any area of the body runs the risk of making the RSD worse or causing spread. It doesn't happen in every case but it is a risk that you need to be aware of when you make any decisions about your healthcare. So before having any surgery it's important to weigh the pros and cons. At some point, for many of us, there are times when you will NEED surgery or some sort of invasive procedure and that is just that. If you NEED the knee surgery then just do some research on what sort of things they can do to prevent spread. I would start by posting on here (seperate thread) for advice on this. I don't remember exactly what the process is myself but I know I have seen people on here give advice about it.

Have you gone through a good physical therapy program? Physical therapy was the single biggest thing that has helped me to at least get back the function...which has helped my mental health a great deal as well. It's hard...but if you can get a good therapist it will be worth it. I did at home physical therapy this last time (where the therapist comes to your house) and it was a godsend. Worked out well in large part because everything that we did in therapy was stuff I could do on my own even when the therapist wasn't there. And I did those exercises every day. It was a long, painful process but it was worth it I think. I haven't had a lot of success in getting the pain level down but I have learned lots of ways to cope with it to help me get through all this and get a large amount of the function back.

I really hope that you are able to find something that works for you. Take care and good luck.

[alt1268]

Hi Jenn,

Sorry to be delayed in welcoming you to the group. Been away for a few days. I have also tried pt, tens, ice (before I knew it was a no no). Got no relief and made pain worse. I have been having lsb's periodically for the last 2 years and in the fall they did them 1 week apart. This really helped (along with the mild winter) Don't loose faith.