[newyorkmets]

Hi all,

I hope you are well. This forum and many like it have helped me cope with this disease so many of you are familiar with. I was diagnosed with CRPS 18 months ago, but it's really been closer to two years since the arrival of its symptoms. I've traveled to many hospitals since and have had them not believe or want to believe the excruciating, burning, shocking pain that I'm in every hour of every day. My latest doctors have brought up something none of my previous have: the concept of a lumbar sympathetic block. In fact, my first one may or may not be in 24 hours. They say it might be too late since it's often used as a diagnostic tool within the first 6 months, still, I'm willing to try anything. So I want to ask you, how did yours go? What was it like 1 hour after? 5 hours after? 10 hours after? 3-5 days after? A week after? Is the needle painful? I'm a teenager and extremely scared of these things. Did any of your pain go away even for a temporary amount of time? I'm scared of feeling relief for a couple of days and seeing it go away until the next procedure... maybe I'm thinking too far ahead. Mines will take place in a operating room, without anesthesia or IV: is this normal? If I didn't mention it already, my affected area is in my left upper leg muscle. When this thing is inserted to my back/spine, will I only feel it in my left side and not my right, or both? Does the limb warm up right away? How do I know or the person who's doing the sticking know if it worked or not, except for obviously me reporting success. I'll keep trying to walk, doing pool therapy, taking medication and need your prayers. Suggestions and comments are much appreciated.

Always,

[Littlepaw]

Hi and Welcome!

I am so sorry you had to come and join us but you will find good support and much sympathy here. I wish that I could answer personally to your nerve block question but I have not had one. That said, results vary in the literature and from what members have reported...as would be expected. I certainly will keep you in my prayers for a succesful block with pain relief. I would think you should only feel it on the effected side. The blocks are done a little to the side of the spine. Warming should happen pretty quickly and is a sign that they hit the right spot. All people respond to sympathetic blocks with warming.

Sometimes they give a little IV sedation for these but it really depends on your doctor and each individual case. Share your concerns with your doctor's staff when you arrive if you are worried about it.

I am glad to hear you are getting in the pool and keeping that leg moving. That is all good. Please let us know how it goes tomorrow.

Sending hugs and healing love,

[newyorkmets]

Originally Posted by Littlepaw

Hi and Welcome!

I am so sorry you had to come and join us but you will find good support and much sympathy here. I wish that I could answer personally to your nerve block question but I have not had one. That said, results vary in the literature and from what members have reported...as would be expected. I certainly will keep you in my prayers for a succesful block with pain relief. I would think you should only feel it on the effected side. The blocks are done a little to the side of the spine. Warming should happen pretty quickly and is a sign that they hit the right spot. All people respond to sympathetic blocks with warming.

Sometimes they give a little IV sedation for these but it really depends on your doctor and each individual case. Share your concerns with your doctor's staff when you arrive if you are worried about it.

I am glad to hear you are getting in the pool and keeping that leg moving. That is all good. Please let us know how it goes tomorrow.

Sending hugs and healing love,

Thank you, littlepaw, for the great welcome and the prayers! It doesn't go unnoticed that you're always seemingly the first to respond to threads like these and May God Bless you and your family..
---
My block has been postponed for next week and I would like to open the stage for further discussion. How was yours and what do you remember most about it?

[gramE]

Hello New York Mets. Sorry you have been added to the membership of the RSD club. I have been having lumbar injections, one in each sacroiliac joint every 4 months or so for five years now. I could not function without them. My pain level before my last injection was about a 20! Because of allergies I am unable to take many of the things others take daily for pain like Lyrica, gabapentan, opiates, a long list. So restricting my activities & the injections are my main source of relief. I do soak my feet in lukewarm Epsom salt water at least once daily & I take muscle relaxers daily. I have a topical, Voltaren gel that I use for nightly flare ups. Oops I forgot the lidocaine patches so I can wear sandals. I do use a cane (I'm an old lady), & a wheelchair for long walking. Forgot to say mine is in both feet, ankles & lower legs.

Back to the injections. I get lidocaine in with the depo medrol so I get some quick relief but not a lot. I normally stay quiet for 3-4 days afterwards. My relief comes gradually over 5-7-10 days. I even had one injection that I got total relief for about 2 weeks + before I began sliding back into the pain. I've also had 2 bad reactions but recovered within 2 weeks of both & had relief from the burning searing pain. I do not have anesthesia because I have an allergic reaction & severe nausea & it isn't worth the added recovery time. I believe my neurologist is very good at what he does & I trust his placement of the needle.

My doc sprays the injection site with a cold numbing spray. Once in a while I have a bit of discomfort at the injection site but not normally.

[Littlepaw]

Hi NewYorkMets,

Thank you so much for your kind comments. I really enjoy welcoming newcomers and sharing what info I can. And I ALWAYS appreciate prayers and blessings. Thanks for those!

Sorry for any confusion. I have not had an LSB. I have a bad problem of scarring down everything and keloid horribly. Thank you Viking ancestry. I have had concerns about scarring near a nerve root because of my history.

That said I have had peripheral nerve blocks and found those helpful. They can calm an area of nerve inflammation which can improve symptoms. When nerves are clunked down they don't glide, then they swell, then it gets worse. Local treatment can sometimes break this cycle. For the thigh a common nerve irritation is known as Meralgia paresthetica. It causes pain and burning in the thigh. This can be treated locally if it is your problem. My Physical Medicine doctor says this is the most common area he treats. Another is the adductor canal on the inside thigh. It may be worth exploring ultrasound of this area to check for nerve swelling and trying a local block to calm things and reduce any swelling. I am by no means saying you don't have CRPS. I just think people have the best chance of beating this thing back if pain contributors have been addressed. It DOES make a big difference and I recently found in literature that pain contributors need to be addressed for folks receiving ketamine so they don't re-centralize.

From what I have read you may get relief in two stages, immediate and a few days out as the steroid kicks in. Whether it will help long term or not who knows. My peripheral blocks brought a long term reduction in my level of pain. I know it's hard not jumping ahead, always wondering how long something will last. We all do it. Try to stay in the moment. Sometimes just having a break is nice for a while.

I think you will find help with the "freezy" spray, ethyl chloride, we have used it for all my injections to address scarring. If they keep it on there a good long time it is quite effective. LSB are commonly given without sedation. Epidurals are also given without it. When I have had injections I specifically imagine a beautiful place and try to pay attention to details in the landscape. I know a woman who focuses her mind on an image of Christ reaching out to her in a field of yellow flowers, which I though was very sweet and beautiful. I have borrowed that too.

Know that no matter what you are not alone. Let us know when you do go in and we will be sending vibes for healing.

[RSD ME]

i hope your nb went well. i had eight of them in my neck for the rsd i developed in my wrist and hand. they helped temporarily wih the pain and helped a little with the swelling but i still have no movement in my wrist and minimully in my fingers. i also had prednisone which helped with the swelling a little more then the nb. as for being awake for nb i was told that's what they usually do but i wanted to be put to sleep when it was done so they did. just make sure if you request this that your insurance covers it. also it sometimes takes several tries before you will see results in a nb. hope all goes well. take care.

[newyorkmets]

Thanks for all your contributions/wish I had more! Anyway, when the injection goes through my back, what if my limb doesn't warm up and should it happen immediately? Will I feel immediate relief and will I be able to tolerate someone touching the leg if it desensitizes? If it doesn't warm or if there is no immediate relief, does it mean I don't have CRPS or that the diagnosis should be questioned? I'm taking this block a year later than I should've because of uninformed medical professionals so should anything that comes out of it be taken with a grain of salt? PLEASE HELP!!

[Littlepaw]

Hi NYM,

I don't know how quickly the limb warms but I do know that limbs warm in anyone who gets a sympathetic block whether they have CRPS or not. Limb warming generally indicates that the placement was correct. Whether or not you get pain relief will be a big indicator about the nature of your pain.

I hope you find relief soon!

[mama mac]

NewYorkMets,
Sorry I have not replied earlier. Welcome. I understand you feeling anxious about the injections and wanting to know everything you can. I have had 3 SNB'S. I was asleep during each of them so I cannot speak to the pain level without anesthesia. Most people are not fully put to sleep and most are given light sedation. Usually there is an IV involved though. Most doctors use a fluoroscope which allows them to guide the needle and ensure proper placement. Many use other newer procedures as well to ensure proper placement. I would make sure at least the fluoroscope is being done. The procedure itself it very short 5-10 minutes. Following the first procedure I immediately felt no pain. I thought it must have worked, but the nurse cautioned me that feeling would return and it did. The doctor will not know if it has helped until up to 3-4 weeks after the procedure. Relief can build over that period of time. There is usually a series of blocks scheduled. The blocks did not work for me. The most relief I got was after the 3rd one and it was about 30%. They chose not to do any more. Many people experience more relief than I did. Many people only get temporary relief from the blocks. Some people get good relief. You will have to go into it with an open mind and take it moment by moment. It's different for everyone. Your age is on your side. Younger people often have better outcomes with CRPS. I do wish someone would have tried it earlier on, but you can't go back. The blocks are no longer seen as diagnostic, they will not tell if you have CRPS or not. I hope this has answered at least a few of your questions. Feel free to ask more and I will try to answer. I wish you luck and hope you receive good relief. Take care, mama mac