If you have RSD in multiple locations- question about blocks...
 

Hi there.

I have RSD in both UEs, both LEs as well as my back, and I was wondering if anyone here who has RSD in both their upper extremity and lower extremity has had nerve blocks?

Can you tell me your results?

I am interested in finding out more about this. I read somewhere (could probably find the link someplace!) that once your RSD spreads and it is no longer sympathetically mantained pain, but sympathetic independant pain that the blocks are less effective. I was wondering if that has been anyone's experience?

Thanks.

Hi Inhishands,
 

I took a break from moving and unpacking and sat down here to see what was going on and I see you are very interested in getting some good help for the RSD.

I had 3 SGB's and they worked great. They helped put it into remission but on the 3rd one I had a bad reaction but it was just me. If it's going to happen it will be with me. I was suppose to have 15 more but just couldn't do them. What kept bringing my RSD out was surgeries until I learned to have a block before the surgery.

As far as a time line, I have heard that so many times that if you don't get it in the first 6 months then it's too late. I think that is the worst thing I have see implanted in peoples minds. I belonged to an RSD group for awhile and I saw a woman who had had RSD since she was like 8 years old and she was in her 40's at the time. I talked her into going to see my Anesteologist and she called me up and said she felt better then she had ever felt in her life. I thin an Anesteologist is better at doing them the a PM also. I also saw other people around here have the blocks after years and they worked. One lady that lived a few blocks from me at my other place was in a wheelchair and they got her walking. I just wish people would at least try them. As far as the bottom half, I haven't had any there and I'm sure they might help my pelvic pain but I have so much going on that I haven't went up to get any. I most likely will in a few months before winter comes back. The barometer reeks havoc on my RSD.

I hope this helps you and if you ever need to PM me, feel free.

Ada

Hi,
I have had both upper and lower body CRPS for over a decade and I had come to the conclusion that by this time my pain would be sympathetically independent pain.It seems I was wrong:(
Fortunately I have a very pro-active pain management physician who will continue treating symptoms for as long as I have them so I still have Stellate Ganglion and Brachial plexus blocks for my upper body and Lumber Sympathetic Blocks for my lower body.
The results do vary from time to time but I don't believe I have ever had a block which has not given me some pain relief to some extent.
I guess it comes back to expectations as to whether you would be happy for a good but not terrific outcome?:hug:

Hi InHisHands,
Thank you ITs karen (rsd kitti) I didnt know you are younger you write so well and so helpful to me. I got you massege I left you one I dont know if you will get it. Thank you so much for caring .I dont know how you are dealing with this I cant like I said my son almost 15 was just put on heart meds and I am going to have surgery for a feedding tub in my stomch.I had one in my chest for 5 trs because what a dr did but I had infections and stopped breathing and so because Im not even 100 lbs anymore they want to put one in my stomach because I cant do it in my vains because the rsd and they are going to remove scare tissue the second surgery the third they want to try a better stimaltior. I dont know how to do it anymore my son will be 15 this month and Im so alone I know everyone here is with me but Im tired and you are so young I didnt know you dont seem to be I guess pain makes you deal or not deal you are Im not .Im just so tired I have been in pain since I was 14 yrs old but the rssd since 2003 but its eveywhere.I have the last few months have started losing control of my orgens bladder ,stomach, I already had it spread to my hands and the rest anything works the injections the blocks dont work for me but dont give up you can do it you can get through it. I was very strong intil the last few months the divorce was done and I guess I could let go but Im a mom thats what Im suppost to do and be and I love it but my son is going to be 15 on th 29th of this month and I fell like I miss being the mom I was he tells me Im a great mom and he wouldnt chande it for anything except the paain for me.......What a great young man he is. I love him he is my life Im just tired and I hate him seeing me like thi in bed and I cant pretend anymore and I dont want to, Im scared with all these surgeries they are going to do but I do them and try or not and not try that int fair to my son is it?????????

You are so wise In HisHands................and everyone that has helped me and keeps helping I just need to find myself out of this place Im at............

Thank you BLESS YOU Gentle Hugs

Karen (rsd kitti)

Dear Karen,

Please stay strong! You are coping with an impossible situation, but I REALLY hope and pray it gets easier for you to deal with.

It must be hard enough being a mother to a teenager with heart problems without adding any other stuff.

RSD is not fair. It is not fair on the sufferer and it is not fair on the family. Unless people have it they don't REALISE how hard it is for people to live with this and for their whole community to live with it. Does your son get any form of support from organisations such as young carers (He might not be acting as a carer but he could then get some support from others in situations vaguelly similar). I know it's not a magic answer but it might mean that you had to worry less about the effect of this on him.

Unfortunatly, there are no mega answers, I wish I could wave a magic wand that would magically make you and everything else better, but I can't. All I can say is that though I cannot imagine living with your situation I can empathise to the best of my ability and I am here if you ever want to talk about this.

Things have a way of working out and I promise, that even through everything there will be people here to support you. The divorce must have made everything a lot harder, suddenly you lose the support of a spouse, even for simple tasks. Do you get any form of carer help?

Also, I don't know if you could use one but could you use a NG tube? just it's not "overly" invasive (no surgery just a numbed nostril!) - I do know how ugly they are, it's just then it might give you the option to recover abit more before the surgery.

Lots of love

Frogga xxxxxxxxxxxxxxxxxxxx (And Frogga's mum xxxxx) :hug: