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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
*Big Hugs* I'm sooooo sorry you're having such a bad time. I know how you feel though because I had a horrific time after the one and only block I had done. I should explain that the rsd was in both legs,feet,hip,hands,arms and tops of shoulders at the time. So....yeah, my whole freaking body felt as if it were being ripped apart. This went on for 2 months. 20+ pain level. I have never, ever met anyone else out there in almost 6 years who had a flare last that long after a block.

I'm baffled as to why the heck there was so much time between blocks!!! They're supposed to be given at the rate of 1 or 2 a week, depending on the doc and also depending on the doc and the patients reaction will do 3 min to how ever many as long as it's working. The reason for giving them in this manner is because in order for them to be effective and build up to longer relief each time, they have to be given no more than a week maybe 2 apart.

IMO since you're in so much pain, tell your doc there's no way you're doing anymore. Remember he works for you not the other way around. He can't make you get another one. Explain exactly what happened. Write it down right now so you don't forget. Put down the only benefit you got from it, how long the warm up in your leg lasted, how long after the block the pain started, keep a running record of how bad your pain is, exactly where it hurts and what the pain feels like. It's very easy to forget things when you're in so much pain so much better to write it down right now so he can have a clear picture of what you went through. Let's hope it's past tense by the time you talk to him or see him.

Hang in there. It will ease up soon. Oh, I am very against the scs myself. I've known a lot of people who've gotten one and really regretted it. The biggest thing after the fact was big time spread. IMO it's not an effective treatment and never was. Dr Schwartzman, a top rsd doc, doesn't do or recommend the scs now because of how much worse things are after its done.

Hugs,

Karen
Hi Gaollan,
Thanks for your information !! It was so helpful knowing I wasn't the only one who had experienced a flare of terrible burning after a lumbar block..I just don't understand it physiologically...why would there be a flare if the nerve bundle is being doused with lidocain...I just don't get it...do you think she missed the target and irritated the nerve?

I really don't want to close the window on getting more blocks..the second one I had a few months ago gave me relief for a couple of days. I asked for this one because I am desperate for some kind of treatment!!!!!! other than Neurontin..My P.M. doc doesn't do lidocain infusions..and I'm thinking that might be the next form of treatment...I think my P.M.doc might refer me to someone else who has more knowledge about options...she is not an anasthesiologist.....

I am a worker comp case and that makes things more complicated...I've just gotten so much worse in the last couple of weeks..burn pain all over the foot (including the ball of the foot) and in legs, I missed work this morning and don't know how I'll make it this afternoon not to mention the rest of the week etc...

I've read your history and so sorry for what happened to you...are you on your own for medical care? Did you ask for medical care when you settled?
That's the scary part if I'm unable to work at some point...what do you do for medical care especially since RSD can become so debilitating down the road..

Are you on a lot of meds and do they control your pain?
Thanks for all you help and the way you help everyone on this board..you are so kind ...and your sense of humor always shines through even though I am sure you must be having a hard time as well.....

Many hugs,
Tigerlily xo
Tigerlily,
I am sorry to hear you had such a negative response with the block.. I had three of them also.. All of them would give me a flare up.. I don't know why.. but it did. I would experience the same thing when I would come home from PT.. I went for two yrs straight.. Everytime I would come home the pain would start... I kept telling the therapist.. He just could not figure out why..
After I went to see DR Schwartzman. That when I stopped the therapy.. He said when something gives you a flare up.. Then don't do it..
As far as the lidocaine infusions.. I had no problem with that.. Just an IV.. I just wish more drs would do that treatment... I don't understand why they don't. All the SCS, pain meds.. blocks.. They are all just bandaids.. My opinion, they don't fix the problem.. I understand that we all need that bandaide or we wouldn't get through the day.. I just hate to read these post about all of you in pain. and here I am one of the lucky ones to get the lidocaine treatments.. I feel really bad.. and I wish I could do something for all of you...
I still get the pain.. not as bad though.. I still take pain meds here and there and I will always be taking the neurontin... I just take one day at a time.. and hope I don't have another injury..
I am here for all of you and always will be..
Take care Michelle
I had mine done under fluoroscopy,live xray, so it didn't go astray. I believe this reaction is most likely due to the pain being SIP, Sympathetically Independent Pain. I also believe when the pain goes independent is when it's more likely to spread. Now, if only the ones researching would catch up with me! LOLOL Having SIP means you most likely won't get any kind of relief from a block.

In Florida there is no lifetime medical care of any kind. When you settle, that's it, there's nothing past that. I don't know of many states that have lifetime medical as an option in work comp cases. I don't take many meds at all. Thankfully I got some good genes from my dad. :) Even though I'm full body I don't need the "hard" drugs, ie morphine, etc. I'm hoping I won't need those for many more years to come. I'd hate to run out of options and have to live the last 20 years of my life in agony. :dizzy: I take vicodin 10mg and baclofen for the jerking limb thing. It helps me enough that I can walk and clean house,do laundry. Not all at once of course. LOL I learned early on to pace myself and I know my limits.

Thank you for the compliment and you're welcome. :) I hope things will ease up enough so you can get through the week! I'll be thinking of you.

Hugs,

Karen
HI Michelle and Gaollan

Thanks so much for your support..both of you have a lot of experience between you with RSD so I feel very fortunate to get your help ! I had a couple of questions on how you interpret flare.. For me, flare is when that terrible burning pain happens, when it feels like your feet/legs are in the fireplace..is that what a flare feels like to you? For you, is a flare that burn pain? I know it's different for all of us, but I do hope that terrible burn pain subsides over time..it keeps me from concentrating or thinking about anything else............

I guess it's bad news that if you don't get relief from a block then it's probably sympathetically independent pain, becuase therefore the blocks are one less option for pain control.. Michelle, do you think the lidocain infusions would work if it is SIP ?? Oh, I hope so..........
It's so great that you are able to work and enjoy it...I know from your posts you are exhausted when you come home..you are very brave..May I ask how much Neurontin you have to take to make it through?

Gaollan, it is amazing that you are full body and take minimal medication!! I hope your days are bearable!! You, too, must be strong and brave.. Do you think the warm weather and humidity in Florida help?!! I wonder if there is a connection!

Michelle and Gaollan, thanks so much for your caring and your posts! I am so grateful for your help! I am trying to stay hopeful and positive...it's just that it's almost impossible to walk because of the ball of my foot and the rest of my foot/ankle pain....and the burn......

Take care and I send you many hugs across the miles.
Tigerlily
I don't burn a lot, thankfully but it does whack me once in awhile. When I talk about a flare I am talking about pain and achy feeling. If I'm "lucky" haha, I get all the joy of sharp, stabbing,shooting pain all over, jumping hither and yon and also bone deep pain. It feels as if some little being is inside my bone marrow with an axe chopping away. I also will feel pain deep in the muscle which feels like the worst achiness, like having the flu along with the need to stretch. Like my muscles feel super tight. When you wake up and do the stretching thing.....I feel like I have to do that, except it doesn't help the pain and actually makes the pain worse. Some days it just muscle pain, others, bone, others the stabbing. RSD really needs to pick one thing and stick to it! LOL Personally, the burn stuff has to go.....it's just wrong!

I would think the lidocaine will work regardless. It's not being injected into a nerve bundle, it's actively working on the nervous system and "deadening" the nerves. Michelle can correct me if I'm wrong on it. :)

Most days are good, except when I have bad days. ROFL Pretty much like everyone else! I DO think living in Florida is a good thing. Mainly because of our oh so mild winters. It's the bone numbing cold and snow stuff that makes rsd scream...and the person too. Summers are hot and muggy but that's what a/c is for! I still deal with fronts, rain, barometer changes like in any state but it makes it all worth everything else when winter comes.

Hugs,

Karen
Tigerlily,
I'm sooo very sorry to hear that you're suffering so much. I've never had a block, but my pain has been very nasty for about 5 days now. I agree with you cuz I'm also scared about the scs -- So much can go wrong, plus the spread. I've been looking into the drug pump -- I dont know much about it but am interested in getting more info. Have you thought about doing that? I'm hopeful that Cymbalta will give you some added relief during this difficult time for you.
You take good care and I'll be sending prayers your way -
Deb
Hello again Tigerlily,
I forgot something so I'm writing again. I was talking with my RSD doctor my last visit about the lidocaine infusions and he said he'd be willing to send me to an anestheologist to see if they would do one so I'm hopeful you're able to get more info and maybe have 1 done. Michelle swears by them.
A flare for me is a very painful turn where I have to take my pain pills every 4 hours to survive my day at work and I'm still hurting soooo much that I wish I could just quit! Seems like many of us are having very difficult time right now.
Let us know if you do the lidocaine infusion.
Hugs, Deb
Hi Karen;
I agreed to go ahead w/the neurostimulator because the company rep said, "it would keep the rsd from spreading in 99% of the time" - well, now...most days I have to turn the dang-gone thing down to near off as the "comforting vibration" they promised turns to a spiking jagging ....not near anything comforting ...stupid expensive machine; yeah, yeah, they reprogram it & the porcupinie (?) feeling goes away for little while but doesn't stay & yep, went to Cleveland Clinic where a wonderful caring doctor says she wants to do yet another catscan of my neck, if it doesn't show anything then of course, my dear friend, if I may call you that, wants to yank this cottonpicking thing out and we'll start the whole process over yet again - in other words, guess it's not in the right spot???? yesterday was a bad day; it's snowing here and the barometer is jumping to & fro, 'posed to get down to the 0"s by end of the week - this is the time I'd like to chop my whole arm off & let's not forget; no one knows why my hands hurt all the time now too....better go now...arm's screaming & there's yet another appointment my dear beloved has to drag me to but God Bless You dear in many ways' - folks think twice, 3,4 times before you let them put this contraption in...and all I hear from the doctors, etc. is how much it helped so & so. yeah right. Keep us smilin dear- heart...
Hi

I am scheduled for a third block in a few weeks (SGB since my RSD started in my shoulder) and my PM doc said he would start the lidocaine concurrently. I'm not sure I understand what will be involved, I need to call his office and find out how all this will work.

The weather has been atrocious this winter in the NE, one flare just leads into another. I don't know what else to try, the meds are starting to give me an upset stomach every morning...this is a total drag. I can't wait for spring, which for RI doesn't come until late April or early May.

Take care, Sandy
The rep obviously didn't know a darn thing about rsd!!! Geez....keep it from spreading. Pffftttt Ah well......if they want to take it out then tell them, sure take the stupid thing out but don't think for a minute you'll be "repositioning" it and leaving it in there!!!!! Nope....far, far better to leave it out because "messing" with it won't accomplish anything and will lead to more problems...more surgery later probably. *sigh* Put your foot down about it.

Brrrrr.....way to cold!! I'm a florida girl and when it gets in the 60's I'm putting on a sweatshirt. ROFL Yeah, yeah...heat wave for ya'll....chilly for me. :D

Sounds like it may be in your arms too. *Big Gentle Hugs* I hope not but when there's no other reason for something to hurt, look at the monster. Oh...you may certainly call me dear friend and anything else you'd like to....just never late for dinner! LOLOL :D :D I Looooooooove my food!

Hugs,

Karen
Meds will mess with the tummy for sure! Sorry all of you are in so much pain from the weather.....snow....brrrrrrrr. Do you eat when you take your meds? I try and make sure I get something in me that will help "absorb" the meds so to speak. I'm not big on eating till a few hours after I wake up so if nothing else I eat crackers or lightly buttered toast, a biscuit if I have them. I don't know if you drink coffee or not....I do, but if so, it's a good idea to not have a cup until at least an hour after taking meds. This gives your body time to process the meds with no interference from caffeine.

Hugs,

Karen
Karen,

You are so nice - thanks so much for your reply. I took your advice and ate some saltines this morning instead of gulping down my pills with coffee and running out the door. It definately helped. I also put my vitamins in my pocket and will take them a little later instead of mixing them with everything else.

Scio Lady - good luck with your contraption - I hope you get it straightened out. Thanks for sharing your info with us.

Sandy
Great idea with the vitamins! Taking them at the same time with everything else will definitely interfere with the absorption of them and probably haven't given you much benefit as a result. Taking them at least 2 hours after is your best bet. Most people probably don't know when you take iron pills, they shouldn't be taking them with calcium as this pretty much renders the iron supplement useless and they should also be taken on a empty stomach as well. It's recommended to take them in the morning and waiting for a couple of hours before eating anything or take them at night before bed. I've been anemic all my life and it got a lot worse when I was pregnant. I learned quickly all about iron. LOL The one down side to iron pills though is they sometimes lead to an upset stomach and/or constipation. If anyone needs to take iron pills, I recommend a slow release tablet because you can avoid all those problems. If it messes with the tummy, take it at bedtime and you won't feel icky because you'll be asleep! :)

I'm very glad that my suggestion helped and you didn't feel all icky.

Hugs,

Karen
Hi everybody,

Thanks for everybody's help with my difficult time with my 3rd lumbar nerve block...Gaollan, thanks for your vast knowlege and willingness to share it with every topic under the sun..you are sooooo kind..

I've said it before and I'll say it again..this board keeps me sane and I treasure everyone on it...so many of you are having a hard time..

scio lady, I agree with Gaollan to not re-install the SCS.. I know so many have had success, but so many have had a bad experience. The one that freaks me out the most is the possiblity of spread. My p.m. doc keeps pushing the scs but never talks about the risks or negative outcomes..she gave me the dvd and info book about it and everything seems cut and dry and perfect...no mention of risks!!! to me that's not ethical because it's only a half truth..I am sorry you are having such a terrible experience

My surgery doc never, never mentioned anything about the possibility of RSD when we talked about surgery..I have alot of anger about that......in fact 4 months after surgery, when I still wasn't healing I asked him if he thought I had RSD because I had read about it on other people's posts. He said "no, you don't have rsd.. so for a few weeks I continued to ice and wear ankle braces..and then 6 weeks later he said "it looks like you have RSD"and he was so non-chalant about it.....like it was no big deal..........
I should have listened to my own intuition.......I probably had months before and had a lot of wasted time in getting a head start on treatment...

Sandy, when you find out what your doc means by doing the lidocain at the same time as your block, please let me know what he means...I am trying to find out about as many treatment options as possible as my RSD is getting worse.....good luck with your third block !! I hope it gives you some relief. It must be doubly hard with the weather being so freezing cold!! Please try and stay warm ..I send you warm thoughts to help you....

Deb, let me know if you make an appt. with an anasthesiologist to find out abut lidocain fusions..hopefully it is something that might help you...I am sorry your feet and and knees are hurting more and more...I think of you getting up and down from your desk in the classroom trying to focus on helping the students....I have an appt. with my P.M. tomorrow and asking her to refer me to an anathesiologist P.M. ...she's not an anathesiologist.....
but as a worker comp case who knows how long this would take, if it happens at all........
I am barely making it through a full time job...I am living hour by hour these days...when that burning sensation kicks in in both legs I can barely stand it.......I just don't know what to do for it..
but as I said, all of you help me make it through...sending you good thoughts, and much gratitude, and lots and lots of hope that you'll all find a way...
Many hugs, Tigerlily
Tigerlilly,
I called my RSD doc this past Monday and he got back today and we played phone tag all day so should hear from him tomorrow. Not sure what will be offered, and it is very frightening reading about all the complications from our options. I definitely want to stay away from the scs -- I know it can work, as I've read on here from people who had success with it but for me, no. I'm now even thinking a "no" on the lidocaine bit just because I know our bodies don't like being poked or prodded. I will see what my doctor says but I'm thinking that meds are better than procedures for me right now. I also want to ask if there's any complications from taking stronger meds besides addiction because someone mentioned they can cause liver and/or kidney problems???? I would think that would be the case only if taken on an empty stomach, but I honestly don't know. If one of you has info on this, could you please let me know? Thanks very much.
My knees and feet continue giving me a hard time and it's difficult to not focus on my pain because it got soo much worse so quickly. And yes, I'm up and down all day at work.
I believe all of us need to do our homework because of all the bad info out there -- I couldn't believe it when I read the bit about 5 years.
So here's to all of us having a better day tomorrow, and here's hoping that all of us have less pain -- Thanks again for all your kind words of support during some pretty rough times.
Hugs,
Deb
[QUOTE] I also want to ask if there's any complications from taking stronger meds besides addiction because someone mentioned they can cause liver and/or kidney problems???? I would think that would be the case only if taken on an empty stomach, but I honestly don't know.
Hugs,
Deb[/QUOTE]

Well...first off, there is NO risk of becoming an addict. Getting addicted to pills of any kind can only happen if you don't have pain and taking them gives you a "high" or any kind of altered state of mind. Since I know for a fact none of us ever get high taking any pain med, then there will not be any addiction problem. Now, to use the proper terms, we become physically dependent, and at some point, reach a level where a certain dose is no longer effective....I think the word would be tolerance. Neither one of these things has anything at all to do with being an addict. It's just a fact that when you take a medicine, ANY Med be it baclofen,neurontin,lyrica,etc..we can't just stop taking them or we'll go through withdrawl. It's a fact that after taking ANY med for an extended period of time, the body builds up a tolerance to that med. It reached it's blood volume level and no longer does the job it's supposed to be doing whether it's relieving pain or getting rid of depression.

I felt the need, as I always do, to address this subject because it's not a reality for people with chronic pain.

As for damaging the liver and/or kidneys, yes, pain meds can cause those organs to become damaged and not function properly. Every drug we put in our bodies gets carried to all part of our body through the blood stream and then absorbed. How we get rid of it is through urine. The liver processes the drug ingredients too. It's only natural that taking these meds may lead to problems. It has nothing to do with taking them on a empty,semi empty or full stomach. It's how the body metabolizes the meds.

The bottom line on pain meds and liver damage is that it's SAFE to take them without worrying about liver and/or kidney damage as long as you don't go over the recommended amount of acetaminophen a day, which is 4,000mg a day or 8 pills that contain 500mg of tylenol. There are people who have been taking pain meds for whatever reason for 20,30 or more years and have had no liver damage. If you're ever really concerned, you can ask your doc to order a blood test to check your liver enzymes and make sure all is well. :)

Hope this enlightening and helpful. :D

Hugs,

Karen
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
Karen,
Thank you for all your information -- It is very helpful. I've come to realize that doctors give the options, but man oh man, it's difficult to decide. I wonder what my doctor will do tomorrow when I see him. At my last visit, he discussed blocks -- Even those scare me because I don't want spread. I guess I'm just afraid, period. Fear is so awful, and I've got lots of it. My pain was at a very reasonable level until recently -- Now the fear has set in.
I will definitely have an open mind to whatever pain meds get prescribed for me.
It's late, and I gotta get some sleep since I work tomorrow -
Thanks again everyone for your help. This board is wonderful.
Deb
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
I looked up causes for neuropathy and listed,among others, is nerve damage,meds like lyrica,cymbalta,Duloxetine hydrochloride, Pregabalin and other meds. I must insert a caution here......if you're taking any of those meds it does [b]not[/b] mean that it's the cause of the neuropathy. I'd suggest thinking hard about exactly when the neuropathy began. If it started after taking any meds,then it [b]might[/b] be the cause, and then again, it might not.

I also looked up rsd and neuropathy. They are mentioned together a lot. We mostly here about diabetic neuropathy but the reason they get this is due to the poor circulation in their legs because of diabetes. It's the reason most diabetics wind up getting part of a leg amputated. Now...rsd causes really poor circulation as well so it only makes sense that we'd have neuropathy as well. Talking to so many people and researching, one thing people with rsd mention a lot is how bits of the affected part(s) are numb. I have bad numbness in my legs and it also affects my arms and hands too, just not as bad as my legs.

So.....to sum up.......RSD DID IT!!!!!! ROFL This seems to me to be the most likely explanation when nothing else is wrong.

Hugs,

Karen
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.
Tigerlily
Your dr is right about the lidocaine infusion.. They do come with Risk but the risk is low. and you are monitored very closely. I can see when he means by last resort.. I've bad a lot of treatments blocks meds etc.. I'll tell you.. none of them worked.. Not one.. only the lidocaine infusion.. I guess its his job to try other things first before that...
Michelle
Tigerlily..
I am so sorry it took this long to get back to your question.. I've been working full time the past couple weeks so I don't get on here as much as I would like to...
To answer your question about the lidocaine working for SIP.. I've met pts who had one or the other.. and Yes. It has helped them.. I met a lady who's had RSD for over 22 yrs.. She finally started the treatment the same time I have.. granted she needed more treatments then me, but she's doing much better..
I feels its worth the try.. Its what the top drs of RSD are doing now for RSD along with the ketamine.. Which has very positive results also.. It just entails alot of time.. and money.. Which a lot of us don't have..
thinking of you,
Michelle
Hi everybody,
Thanks for all your help !!!!
I, too, am certain that all of this sudden neuropathy is RSD related, especially since my brain MRI came back nagative. My new neuro doc has arranged for bloodwork; 2 hour glucose test, B12 count, metabolic analysis, lyme disease, etc. This doc is thorough, (even though he thinks that RSD is only regional and that's why it's called Complex Regional Pain Syndrome...I'll forgive him for that..maybe I'll be able to expand his RSD horizons)

I am increasing my Neurontin and will try to manipulate my foot and ankle more (owwwwwwww..) and do self massage on my feet and legs..That terrible burning feeling in the feet and ankle and both legs is what I can't seem to lessen...
Walleye, you're right when you say that trying to rejuvinate the nerves brings up "waves of the uglies!" ...and those wacky, zingy, zappy sensitive nerve endings in the ball of my foot. aarrgh, I can barely walk..
I'm going to try and keep the possibility of lidocain infusion alive with my docs..the biggest obstacle would be the worker comp ins. In the meantime,
I'll try and imagine myself, and all of us, healed..
I hope all of you have a restful week-end...
Trying to keep the hope alive! Tigerlily xo
Ask your doc if it only stays in one place and doesn't spread, then how can he explain a vast majority of people with rsd that have it full body? *snorts* See how he handles that one! LOLOLOL

Hugs,

Karen
Tigerlily,
Sorry it took so long to get back to you... The answer to your question regarding the lidocaine infusion.. Yes.. They do give this treatment to pts with SIP.. Thats the kind I have.. I had no response at all from the blocks.. Thats what usually determines what type it is...
Usually if you show improvement or any type of relief from the blocks its SMP.. Then they will direct the therapy at the sympathetic nervous system..
If you do not respond to the blocks this usually tells them that you have SIP.. and that is usually associated with the central nervous system. Once its to that.. Your prognosis is more guarded.. There's less response to treatment, such as the blocks and meds..
The lidocaine was so helpful.. Its so good to hear other people talk about it.. Maybe it will bring some awareness to other drs.. I am sure if any of your drs have questions regarding the lidocaine.. They should contact Dr Schwartzman.. He would be happy to help..
Michelle
Michelle,
Thanks for posting in the midst of your busy busy life!!! I know you're working now and then you come home and take care of your own family!! You story is amazing and so is your strength.
I will talk to my P.M. doc and ask her what she thinks about whether mine is SMP or SIP. I'm concerned that she may not know the answer. I'm also concerned she doesn't know enough about the treatment options nor does she have the tools and "arsenal" to fight the battle. She is so sweet and caring however and that's also very important. I realize that it's up to us to research and sometimes direct our treatment!! I don't have an appt. with her 'til Feb. 17th !! (Wow, why is there so much time between appts!!!!!) But it gives me time to do more research. I might call Dr. Schwartman's office (yikes!) and ask his staff if he has a recommendation for a dr. out here in Calif. that I can at least have a one-time consultation with !!!! I hope you have a good week and that you're enjoying your work with the children!!!
Lots of hugs,
Tigerlily
Thanks for bringing up the question about how to tell if it's SMP or SIP!! Of course, I ran off here and did some research to see if you could tell or not. So....in all my glorified geekiness in doing what I do......here's what I found.

The answer is really, really simple too. I actually knew the answer already but just in case I was wrong...I looked. You know when the pain is SMP if you respond, even a little bit to a sympathetic block. Your pain is SIP if you get no or very, very small relief from a block. I found a short article in Science Daily that did a small study of SMP and SIP. The look at 20 people with rsd and what the response to blocks would be. Those who had SMP responded to the blocks and showed some improvement. Those who show less than 50% or got no relief at all had SIP.

So there's the answer and you probably already know yourself which one you fall under. :) Mine went SIP pretty quickly.

Hugs,

Karen
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
[COLOR="Blue"]Hi Michelle,

I'm so sorry about your fall. I can understand your fear about it coming back and I hope it doesn't. It's such a rollercoaster ride, isn't it? Be careful in that ice and snow...spring is coming :).

Sharon :)[/COLOR]
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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