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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


I had a third lumbar sympathetic nerve block yesterday...I had the first in August, the second in Septmeber and a third yesterday....my leg warmed up a bit after the block..I woke up this morning with a slight burn in the left foot and lower leg....as the day went on the flare increased and it was horrendous by tonight !!!!

I had been having more flare-up's lately but I thought the block was going to help!!!!! Needless to say I'm scared to have another after what happened to day!! I don't know what to do next!!!

The RSD is in my left foot and I get terrible burning in both feet and legs now, and in my mouth.....My P.M. doc wants me to do a spinal cord stimulator, but I am concerned about spread!!!!!!!!! I have been taking Neurontin and start Cymbalta tomorrow.

I asked about lidocaine infusions but she doesn't do them..and after this block I would be worried to try that!!! I'm feeling lost and scared...I am barely making it through the work day (full time) I can barely walk...i had to use my knee caddy today....

..my foot/feet feel like they're in the fireplace...

Has anyone else had a horrific flare after a lumbar block??? Thanks for listening.....I so grateful for this board and for all of you out there..I am trying to stay hopeful and strong, but I'm having a very hard time tongiht...
I hope you are having a manageable week-end..
Many Hugs,
Tigerlily
Deb..Roseinsandiego...
I had an appt. for the first time with a neurologist today...it was through my own ins. and not the worker comp ins. He said I have neuropathy..my left pinky has been numb on the lateral side and he thinks part of my non-rsd foot might have neuropathy as well (he did a lot of reflex testing and prodding with a tiny little needle)...he's going to do a nerve test on my arm to check out my ulnar nerve ..he also is prescribing a neck /upper back mri...

Is your neuropathy a result of your rsd or is that a whole different issue??
I wonder how the docs know the difference. I told him my mouth and tongue feel weird...(a burning sensation) and he has no idea why...Frankly, I think it's all because of the RSD...I am increasing the neurontin..

He also said the RSD/CRPS will stay below my knee on my RSD leg/foot and that's why is called REGIONAL pain syndrome!!!!....good grief.....helllooooooo, it does migrate....
oh well, at least he put me in a good mood for a while...
He also said that lidocain infusions should be done as a last resort as the treatment does come with it's risks, particularly cardiac.........

Everyday, different info, more confusion!!!!!!!!

I hope your day was tolerable and hopefully even pleasant!!! Let's not ever give up!!!!!!
Hugs alot!!
Tigerlily
Tigerlily,
Once my RSD got diagnosed, my doc wanted me to see a neurologist because I had some nerve damage in my left foot/ankle. I had lots of numbing in my foot (on the bottom, where my incision is) so that's why. The neurologist ordered a test called an EMG on both my legs -- Holy cow, it was NOT comfortable. At times, it was even painful. During the test, they kept asking me if I had diabetes in my family -- I don't. Needless to say, I was told I have neuropathy in my legs and I have NO CLUE why -- The stats actually say that about 30% of cases have no known cause. The biggest reason is diabetes, and then B12 deficiency comes next but I don't have that either.
I'll try and write more tomorrow after work, but I need to sleep right now -- I'm very tired. Will let ya all know what happens at my appt tomorrow -
Thanks again for all your kindness and support -- I hope everyone has a good day tomorrow!
Smiles and hugs,
Deb
The EMG 's are not very friendly. I my self had them on both feet and shoulders. Not pretty. I have nerve change in my lower back that they say will effect my left knee but as of yet hasn't happened. I have a neuro doing a my rsd and a internal med doc handing out the pain meds. The numbness that is around the incision I was told is because a nerve was cut or nicked. Mine has never gone away. Is this what they are calling rsd? It is nerve related. I was told to rub, scrub, touch to get the nerve to rejuvinate, but that only sets off waves of uglies. Hope your news is good.
Hey Karen,
You said that so well.. That is how you determine it... I went for three blocks, not one of them did a thing.. If anything it made it worse... I think I was SIP right off the bat.. I know that SIP involves you SNS.. and my rsd came from herniated dics ... The dr had said. right away that I injured all the nerves going down the sides of my spine and the nerves going to my brain.. I have what they call the mirror spread. All four extremities are exactly the same.. It started in my hands, even though I injured my neck.. and right to my feet.. Now up the arms and up the legs..
I think for my biggest problem was I was dx four yrs into already having RSD.. I kept telling the drs. Something else is wrong with me.. They didn't listen.. I started taking pictures... I had to.. Because everytime I went to the dr.. I showed no symptoms.. I took pictures every day before and after work.. Wow that changed everything.. Even for my lawsuit..
I am rambling now...
Today was a bad day for me.. Yesterday I fell in the driveway because of the darn snow.. Last night was horrible.. I flared up so bad.. I had such involuntary movement.. It felt like I had to move constantly.. Today I feel like I was hit by a train.... I am so afraid that this will bring on my RSD.. I've been in remission for a while now.. I cross my fingers everyday.. Hoping that the ugly monster does not return to where I was.. I have a feeling it is.. but Ill have to see..
When I get these bad days.. I just up my neurontin.. It realy makes a difference.. Back in the spring my left hand went totally numb.. I called Schwartzman office.. The doubled the neurontin and the numbness went away.. Without that neurontin... I am sure I would be having problems..
Oh well.. Just another day.. Can't wait to sleep.. Have to watch my American Idol first.. lol..
Michelle
Thank you! I try to keep explanations simple. LOL I know about the block making things worse. Holy cow my experience was......it was.....horrific! I was a wc case and they decided over a year into it that I HAD to get a block done. I didn't want to but they told me if I didn't, then I wasn't "cooperating" and they'd cut off my checks and docs. I wasn't getting any meds so that didn't matter, but we needed the little bit of money I was getting. So,in I went and got me a lumbar. LOLOL I wasn't but 1 minute away from the office on the way home when the pain hit. OMG!!!!!! It only got worse from there and I swear my pain level was a 20+. I couldn't walk,stand,sit,lay down,nothing. I was sooooo miserable. The horrific part was I remained this way for 2 months after the block. :eek: Needless to say I was quite firm when I told the doc, I ain't doing that again! ROFL

My rsd went from left leg/knee/foot up into my left thigh and hip,mirrored over to the right leg/foot/hip, then left arm/hand/etc then to right arm and the top of both of my shoulders. This all happened in 11 months. I firmly believe that by not getting any pain meds and having the pain rage out of control was the biggest reason it spread so fast. Being made to go through PT didn't help anything either.

Darn that snow!!!! So sorry you fell. *hugs* I hope what you're feeling is just temporary and will calm down soon. Can you get an infusion to make sure it doesn't come raging back? I'll be thinking of you and for you to feel better very soon.

Big Hugs,

Karen





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