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Old 02-01-2009, 09:12 PM   #1
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Reboot Nervous System? Five major spine surgeries...

Eleven years of terrible pain and surgery and surgery. I don't know if my question should be posted here or over at the Nervous System board, so will try here first since I know those who have had spine surgeries end up (well, don't know if every one that has does) complains of nerve pain.

I have nerve pain, spams, bowel and bladder dysfunction, and massive cervigenical headaches to boot.

Has anyone ever heard of reboot their Nervous System? I have heard that in Europe it might be done with Ketimin (spelling?), but have no knowledge of anything like that here in the States.

All the meds for nerve pain that I have taken or am taking barely do a thing. I, we, need to find something that can reverse the course of nerve pain. I've been told by doctor(s) that my brain (or maybe the neurons in brain) are out of whack. No test performed to prove this, nor do I know that there is--would think docs would have performed all ready,but....

So, has anyone heard of rebooting nervous system? Ever tried it? Did it work for anyone? I wonder, if it worked, would you be posting here? Hmmm.

 
Old 02-01-2009, 09:19 PM   #2
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Re: Reboot Nervous System? Five major spine surgeries...

I just did search for rebooting nervous system, and yes it is Ketamine and it is done in Germany but not allowed here is States.

 
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Old 02-02-2009, 08:21 AM   #3
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Re: Reboot Nervous System? Five major spine surgeries...

they do use the ketamine here but for ONLY severe cases of RSD(a ketamine infusion). if you go to the RSD board just above here,i think if you did a search on it, just THAT board,you may find something on it there. that is a very very extreme way of trying to manage chronic pain tho. its a very carefully monitored process that can only be done by certain specialists who have very extensive training in the use of it in humans. someone up on that RSD board would more than likely be able to tell you more about it. but i do think you may have a very very hard time in your case in just even finding a doc who would do this for anything other than severe RSD,and actually finding one of those docs who actually do it too.

what is the extent of damage in your spinal from the surgeries you have had done? do you have any level of actual spinal cord damage? i just had a really good suggestion for something you could try that i have done becasue of my spinal cord damage andthe other traumas that my body has suffered,myofascial release,along with craniosacral therepy. the cranio actually 'unwinds" traumas that egt stored in the CNS everytime we suffer any level of injury that causes us pain. my biggest trauma to my CNSwaws having it cut into to try and remove a cavernous hemanioma. my body has an unbelievably high tone and i am very hyper reflxic too. this therepy has helped me sooo much with all the muscle damage from repeated surgeris that cut into muslcles,and also gets rid of the ugly wads of trigger points too. but that cranio helps to try and restore a more 'normal" tide and flow of CSF and like i mentioned,unwinds congested nerves and traumas from our CNS. this would be a excellent therepy for you too to just try and see how it works for you. this honestly is the ONLY real therepy that has given me reduction in the overall intensities of my very severe pain and keeps those TPs from reforming too. they used to be just nasty,they are much smaller and don't redo themselves right after either.

your body just sounds alot like mine. this would be a helpful therepy in a few different ways for you. i also have RSD in one side of my body i my knee and another hidious pain syndrome called central pain on the left side,all from the results of spinal cord damage. alot of othe crappy pain is here too,but those are the worst of the worst only because they don't respond to any level of narcotics what so ever. i have only had six seperate surgeries since 01,and an aneurysm coiling just for fun cuz i wasn't having enough fun already. it would appear that with every surgerym,there is always some sick pain that gets left behind to have to deal with.i can relate to some of what you are dealing with here. some you cannot do anything about,but other types you can get a better quality of life if the right things are used. the myofascial and cranio really IS agreat therepy to try tho. i would very highly recommend it for your particular issues. believe me,if it can help me in any way and the mess called my body,it can help someone else.

the key here tho is finding a really good and experienced therepist who does this. there are alot more therepists who do this now vs years ago when i was rehabbing my leg and arm after my spinal cord surgery and my therepist tried like all get out to get my ins co to even cover the release therepy i so desperately needed back then. they had to make a huge incision in the back of my neck on down to the shoulder blades just to get into my cord. it caused a huge muscle mess from hell. i honestly think if i could have had this therepy done back when it would have made a huge impact in those muscles,i would not be dealing with such horrid muscle crap/pain now.

just a suggestion you may want to try before even thinking of going with what the ketamine could do to you. its just a rather huge huge deal to do that to your body,espescially if other things could help ya know? there just IS a big reason as to why this therepy is not routinely done here inthe US. i just cannot really see just how ketamine could possibly 'reboot" your CNS? i would see about the myo and cranio tho. it really does work and help with what i have. i do wish you luck, please keep me posted,marcia
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3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 02-02-2009, 10:25 AM   #4
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Re: Reboot Nervous System? Five major spine surgeries...

Hello. I have only scanned what you wrote. First, thank you for responding. I need clarification: What is RSD and CNS? I've been told I have Complex Reginal Pain Syndrome, is that what RSD refers to?

Yeaaah, getting to Germany would be an impossibility anyway. I was hoping to find the Ketamine thing, or something like it, here in the States. Though I did consider couple years ago due to learning that are far advanced in the world of spine surgeries than here in USA.

Be back later to read all you wrote. Will write back. Blessings.

 
Old 02-02-2009, 12:49 PM   #5
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Re: Reboot Nervous System? Five major spine surgeries...

beware of the dreaded "K-HOLE"....

 
Old 02-02-2009, 08:31 PM   #6
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Re: Reboot Nervous System? Five major spine surgeries...

Hey Feelbad, when you say they use ketamine here--where is here? Are you speaking of the States or in Germany or Europe...?

 
Old 02-02-2009, 08:37 PM   #7
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Re: Reboot Nervous System? Five major spine surgeries...

Quote:
Originally Posted by rootsy13 View Post
beware of the dreaded "K-HOLE"....

I'm in the quick of it trying to figure out if to have gallbladder removed or keep it (have had bowel dysfunction for years--thought it was just the meds, well, it is true that they caused bowel problems and now I end up with calcified gallstones that the gastro says must be dealt with quick--SURGERY)and hope that flushing works. I've been told to beware of flushing. I've been told flushing great. I don't know. When your body is breaking down, and you had so many surgeries, on tons of meds, and are living in constant pain, one seems willing to do whatever is possible to make it all STOP.

 
Old 02-03-2009, 06:59 AM   #8
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Re: Reboot Nervous System? Five major spine surgeries...

i DO know how you feel there. you DO have RSD, its the same thing as CRPS, there are actually a couple of different "types" of RSD,so they did change that name to CRPS to cover it all with one name. when i mentioned the CNS, it was a quicker way of saying the "central nervous system",thats all. have you been up to the RSD board at all(it is right above this one in the 'R" section)? there are just some great knowledble people up there, some of who i do believe did have the infusions here in the states somewhere, you would have to post that question up there.

just curious as to just where your RSD is actually located within your body? mine is in my right knee down thru my foot. have you ever tried an actual sympathetic block? these can help tons with certain peoples RSD pain since the RSD does get triggered by sympathetic damage somewhere in your body. they discuss these alot up in the RSD boards too. i have had a few over the years when things start burning above what my TENS unit can help with. it will usually bring it down to a much duller roar for me.

the TENS unit is also about the only thing that i have tried that really helps with my RSD flares i get,so its another little pain control tool that has helped me with my RSD pain. between the sympathetic blocks and my TENS unit,these are just what help me the most. i have tried many different types of meds but they all appear to really hit me hard with side effects. what meds have you tried or been on to help with your pain? are you being treated by a pain management doc at all? these pain clinics are where they really know the best ways to try and bring down pain. not just from RSD,but alot of different types of pain. if you have not yet seen a good pain doc,you really do need that level of expertise for what you have going on. most pain clinics also have an anesthesiologist either as your actual pain doc or someone on staff. these are the folks who do the symp blocks,and other injections for pain control.

do you know just what triggered your RSD? was it from one of your surgeries? thats the most likely causes of it. mine was from spinal cord damage that was done during my surgery in my cord. somehow some way,the NS ,while doing my surgery,managed to also hit my sympathetic nervous system inside my cord. i have alot of sympathetic damage now to have to deal with.

if you could answer some of the questions i asked it would help me to try and help you in the best way. also,take a trip up to that RSD board,you will be welcomed, trust me. good luck, Marcia
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3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 02-03-2009, 01:56 PM   #9
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Re: Reboot Nervous System? Five major spine surgeries...

Quote:
Originally Posted by chevmal283 View Post
I'm in the quick of it trying to figure out if to have gallbladder removed or keep it (have had bowel dysfunction for years--thought it was just the meds, well, it is true that they caused bowel problems and now I end up with calcified gallstones that the gastro says must be dealt with quick--SURGERY)and hope that flushing works. I've been told to beware of flushing. I've been told flushing great. I don't know. When your body is breaking down, and you had so many surgeries, on tons of meds, and are living in constant pain, one seems willing to do whatever is possible to make it all STOP.
I understand...good luck to you.

 
Old 02-03-2009, 07:00 PM   #10
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Re: Reboot Nervous System? Five major spine surgeries...

[QUOTE=feelbad;3872407]"i DO know how you feel there. you DO have RSD, its the same thing as CRPS, there are actually a couple of different "types" of RSD,so they did change that name to CRPS to cover it all with one name. "

Thank you for the clarification. I was told I had CRPS by surgeon, then sent to a new pain mang doc who waved it off without any discussion because as he said "not cureable." Have not been back or to another pain mang in almost two years. Eleven year Work Comp case in Cali. More about that later as I read on.



"when i mentioned the CNS, it was a quicker way of saying the "central nervous system",thats all. have you been up to the RSD board at all(it is right above this one in the 'R" section)? there are just some great knowledble people up there, some of who i do believe did have the infusions here in the states somewhere, you would have to post that question up there."


When I read "CNS" the first thing that came to my mind was Crosby, Stills, and Nash. Funny. I can't believe I missed that one. I will check out the board, so, no, I haven't been there yet and didn't know it existed.

"just curious as to just where your RSD is actually located within your body? "

I have had three lumbar surgeries and two cervical surgeries--all five in three year period. Nightmare. The cervical double-fusion surgery left me with massive cervigenical headaches. I had that surgery in 2000. Within a month of it, first visit to ER for the neck/head pain. Level 100 out of 10 (Ha).
On and on to the ER for several years. So many meds. All kinds of pain, antidees, and nerve. Was finally put on Actiq in 2004/05. Placed into detox in Feb '07. Rotten teeth. Bowel problems. Yeah, the Actiq stopped the neck/pain, but side-effects not good, I guess. Would prefer to be on high dose of pain med then suffer in high dose of pain.






"mine is in my right knee down thru my foot. have you ever tried an actual sympathetic block?"

It sounds familiar. I have had a lot of different types of blocks and epiees. When I find new pain manager (found one here that specializes in CRPS), hope to remember more about what has been done to me over last decade.

Symptoms (well, some)-Lumbar feels like it is broken
Sacrolliac (spelling?) joints in terrible pain
Terrible electrical pain throughout
Muscle and nerve (well that is what it feels like)spasm
Cervi headaches that no one can figure out why
Pins and needle/creepy crawlers mostly
legs/feet/arms/feet.
The bottom of my feet burn with terrible concentrated
pins or *****s...feels like walking on glass sometimes
My feet curve in,like tightening of muscles in feet
The headaches of course cause terrible eye pain
Bowel/bladder dysfunction but cannot get Work Comp
to acknowledge it or doc to report that related to
nerve issues. After a eleven years of bladder
dysfunction (sometimes pee up to 36x in 24 hour
period, finally new technology comes around and
learn that bladder neck doesn't open properly.
And and off paralysis of arms and legs. That is freaky
painful and scary.
My right foot is usually cold even when with two or
pairs of thick socks on.
Electrical pain in groin and nightly, um, ya seen those
commercials for those pills for men that say if longer
then 4 hours go to ER--Yeah, that is me but without
the pills and lots of pain.

I'm going to stop here. Finish read and posting back later. I have much to do next couple days. I'm researching whether to flush gallstones out of gallbladder and therefore save it from an outcoming surgery. I've been encourage to flush and not have surgery. Yet others say not big deal and they feel fine, so much better in fact, after they heal up. Thing is, I obviously haven't responding well to previous surgeries and now fear all surgeries. Yet, in so much pain, have to do something.

Is there a Work Comp board/forum here? I have questions about it and Social Security.

Hey, thanks for writing me. I really, really, appreciate it.

 
Old 02-04-2009, 07:28 PM   #11
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Re: Reboot Nervous System? Five major spine surgeries...

I'm sick, meaning cold/flu coming on. Has become a regular part of my life every since double-fusion neck surgery in 2000. Like I think I said, my body has experience so much tramua, that I'm depleted of life and the necessities of which combat the common cold. My mom used to tell me that I never got sick like my brother because I had my tonsils removed when a child. Now, yeah, I get a cold, and months later of consuming this and that cold/flu med, still sick, and growing sicker still to the point where put on anti-biotics. And that isn't a good thing. Ya know how one's inner workings grows immuned to them.

Anyway, I'm just dropping by to ask you how exactly am I to know that I CRPS? You asked me where it started on my body. I don't understand what you mean by that. Is there something on surface of body that also would indicate that I have it? I also just learned there is stages of it.

Oddly enough, I learned that last night about 3am when looking through a ton of printing articles tossed and resting all over my house I found an abstract about Ketamine. I have no memory of searching for that. I must have been during time of high dose of meds messing with my mind--still fighting the pain. Double-edged sword deal: That which is fighting one battle to save ya is at same time attacking and destroying ya in other ways. Anyway, this abstract spoke of the ketamine treatment for CRPS folk. It completely cured at least one person discussed. Of course all the docs and medical institutions listed as being in Germany. At very end though of list of Germany docs there was one Philadelphia, Pennsylvannia. Wow. I know I should jump the gun, but maybe there is hope there for the suffering, like you and me.

So tell me, how would I know that I have CRPS? I have yet to search for the board here for that site. I'm new to this place, so didn't even know it existed until you mentioned it. It must be a sub-board. Have to find link.

Finish reading and responding later. I have considered the tens unit too. But I have heard horror stories about it. Oi. I'm dealing with the fact that doc believes gallbladder must be removed. Some folk say no problem since it removed. Others say wish they never did it. I'm don't know what path to choose. Do know that I'm terrible ill, bowel wise; but I know that has been the case before calcified gallstones found. So I sense even when it removed, still will have bowel dysfunction due to nerve damage due to spine surgeries or the down poor of fiery ramifications of uses meds to fight the pain.

 
Old 02-06-2009, 06:19 AM   #12
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Re: Reboot Nervous System? Five major spine surgeries...

i am kind of curious as to just what horror stories you have heard about using the TENS unit? mine is about the only thing that actually helps with my RSD flares. its just electrodes with a tiny unit that creates impulses that YOU set yourself to your own comfort level. i just have yet to hear anything bad about the unit and using it for pain control. can you enlighten me?

when i asked you about just what triggered your RSD and where it was in your body,it really was about how did the doc that told you you had this determine it? what tests did he do on you to come up with that particular Dx? do you have pain(burning/stinging) anywhere in your body? this would more than likely be the RSD spot,or where it has started in you. this could have been triggered by your spinal surgeries depending upon what was actualy done,how bad your damage was,and if they hit your sympathetic nervous system during the surgery.

in order to have RSD just trigger itself in your body somewhere,you would have had to have suffered some level of actual sympathetic damage somewhere. this can happen sooo easily since the SNS just governs so much in our bodies,including dilation and constriction of blood vessels. people have gotten this just from some stupid tech not doing a blood draw properly where they actually cause some level of actual damage to the vessels,which can trigger it too. it is just a very bizarre condition that can come from any trauma to alot of different areas in our body. but in most cases,it shows up in a site that has alot of inflammation going on or in an older injury(it didn't have to be a bad injury, just injury period). mine shopwed up in a really badly worn knee that had a cyst growing in the back of it. that knee hit a dashboard too many many years ago in a car accident. you just never know.

the way they can actually Dx this in a person is thru trying whats called a sympathetic block? this blocks only any real pain that is stemming from a sympathetic source,so if your pain feels any better AFTER that block is done,it would indicate a sympathetic generator is responsible, hence,RSD. if it doesn't get ANY better then it is probably not RSD or sympathetic related(it my not always work if the doc doing it doesn't hit that sympathetic chain with the needle too). but they can do bone scans too. any RSD affected area will ALWAYS have a temp difference,it can be either hot or colder than normal either way. but that IS part of the condition that is casued by the vasomotor(blood vessel flow problems) malfunction that also is part of RSD. i did se you finally found that RSD board too,thats great. there are many wonderful very helpful people up there who have had this for many years,so they do know ALOT about the condition. i have had mine in my knee down thru the bottom ogf my foot since 2003. there are other outter symptoms with this as well but i do think you got that info already from the other board? just stick with that RSD board,they really have been a wealth of info for me when i first started on these boards just looking for info like you are. the pain board may also be of help to you too. it is in the "P" section above the RSD boards. great people there too. if you need any other questions answered i will be here hanging around. i also hit the RSD boards too.

i really am curious as to how the doc you gave you this diagnosis came up with that since it appears you have had no real testing done at all? what did he use or do to come up with CRPS? marcia
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 02-06-2009, 01:46 PM   #13
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Re: Reboot Nervous System? Five major spine surgeries...

Like I said, so many tests done over ten years, then he hits me with that on last visit. Wait, he told me a visit before. I didn't know what the heck he was talking about. He says I have something and it is the reason for all the pain. He didn't say what to do or anything. I became busy with bowel problems for the next month, and when I returned for last visit, I asked him how it is that all this is going on? Then he hits me again with it. He says remember what I told you last time. That is when he wrote it down and off I went thinking I would soon be off to new docs to help me. Didn't happen, and time passed by dealing with the aforemention pancreatitis, and the cancer scare and the bladder deal--I'm having surgery (I don't want it. I don't even get it really.) on bladder next Friday. My bladder neck is said not to open and that is what has been causing me to pee and pee and pee all day and night long. Oh yeah, then there was the losing control of bladder. Many times over. Terrible story. For another time.


Off to call Gastro....

Read and write you later. Thank you so much.

Last edited by moderator2; 02-06-2009 at 07:23 PM. Reason: please edit out the huge quotes

 
Old 02-06-2009, 04:24 PM   #14
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Re: Reboot Nervous System? Five major spine surgeries...

[QUOTE=feelbad;3876172]i am kind of curious as to just what horror stories you have heard about using the TENS unit? mine is about the only thing that actually helps with my RSD flares. its just electrodes with a tiny unit that creates impulses that YOU set yourself to your own comfort level. i just have yet to hear anything bad about the unit and using it for pain control. can you enlighten me?


Hey. Had to come back. Keep in mind, it's been many years and I have a lot of things to remember and heard many different tales of why you should or shouldn't. When I thinks of Tens, I also think of the device that I was told was going to be place into me, under a rib and then to tubes treaded up to top of cervical where near C1 where headaches begin. Thing is, that unit was a medicine delivery system. I remember back then being told by folks how they hated it because now they have had this surgery for a device that limits them even more, like MRI or Flights in Planes, etc; and sad of all, they have it filled up every three months I think it was back then, but they would get slammed with pain, but only med they had to fight it was this delievery system that one couldn't pump up to fight the intense pain. There was another guy who stopped ended up back on meds along with device. Another gave up having filled and was allowed to go back to pain meds, but didn't bother to have device taken out back then. Another said that he had surgery because told that he on meds that adicting, but still ended up in detox after years with the device. Another had the Tens your speaking about, complained about the shocks that they couldn't control. Would have to make appointment with doc, who would then have to go back in surgerically to move the wires around.

Yeah, it shouldn't be, but those are ominous thoughts to me. But it's good to hear that it works for you. It gives me hope still. And you can control it is good news. Where is it placed in your body? I was told that it would take more than three, but insurance would never cover it. Well, they never allowed one--yet.

Nov 1997 Injury to lumbar, thoracic...later cervical included in claim
March 1998 17mm herniated disk Lam/Disk
1999 Double Fusion L5s1 L4/5
2000 Double Fusion Cervical C4/5 5/6 No herniations. 2mm bulge one disk and stenosis on other level--Makes you wonder "why?" If you know what I'm saying.
2001 Experimental cervical surgery to try to stop headaches. Bore out part of back of spine.
2001 Hardware removal from lumbar. While in, found not fused. Refused

 
Old 02-06-2009, 09:38 PM   #15
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Re: Reboot Nervous System? Five major spine surgeries...

Hello Feelbad.

Hey, I need to keep writing. I need info.

So I was writing out a list of symptoms, so I now want to add to it with some more context and maybe you or others can led me in right direction. Plus, I need this to force me to write down this "happenin'" so have it ready for docs.

Like I said in so many words, became distracted with bowel and sickness and fighting Work Comp, actually, I finally cracked, closed the door, and refused to take calls from...it don't matter...point is, I had to escape it by shutin' myself in, with blankets overhead...so CRPS went by the way side until just last month when I remember to tell neuro, and show him document from one time surgeon. Thing is, one would think that the neuro would have picked up that CRPS might be what going on without me mentioned it; but, as someone said here, and the same is true of Archnoiditis as I've learned, it's not like every doc is going to be well informed about it or that.

OK. So in 2000 have the double-fusion neck surgery. End up with massive cervigenical headahes. Found here and there passed out on ground at times from the pain. Someone calls 911 and off to ER again. This was the focus of care, though lumbar and thoracic pain and electrical pain also be treated. Years pass on, and nothing working to curb the headaches. I finally drop out of college where I was straight "A" student. I finally put on Actiq. Almost three years of that until detox '07. During 2004-present, many of symptoms that now prevlant and as dire as headaches began to arise. Then the CRPS brought up.

Now back to other symptoms.

Exsessive sweeting and B.O. for now reason. Not like sweating in the sun. Even when in sun, never sweat like that before.

I awake to the feeling of the weird sensation of pins and needles, or creepy crawlers,or whatever, all over my body. Then deal with the buring feet, and other symp's all ready mentioned.

Now, one day back in '05 I think. I pick up sand at the park. My body is overwhelmed with what I can't really described. Think of finger nails on chalk board, but so much worse. The pins and needles. I brought sand dashed over to water fountain a drench myself with water. Now dirt, lint, sometimes clothing, does the samething. Told by doc when it started that it is an AID. I used to live at the beach. Surfer...Long gone are those days of glee.

Iching. Switching. Thursting with wanting. My body thrown up from bed and torso twists on way and neck/head twist another. As another doctor once said, the neurons in your head out of control. So much tramua.

Pressure placed against lumbar obviously causing electrical pain in certain areas and well as other things wish not to speak of as well as make me need to pee.

Dry skin or very oily skin (the oily probably meds, but the dry...new to me).

One speaks of vascular problems. Yeah, I know there is something wrong in that area. Doesn't matter why yet, or for now. But obvious.

Toe nails don't seem right.

More to come, but would like to end this session by saying, a doc, a person who doesn't get it, like friends or family, find ways to explain it all away.

One could say that just getting older. Another could say nerve damage--well of course, but how is legs and arms both being attack with pins and needles when more scar tissue in lumbar (more surgeries same place) then cervical?

Are you following me?

I should be posting this at the CRPS forum, but all ready in talk with you, so why switch horses midstream--though I'm told you can't do that.

The thing about Archnoiditis and CRPS, is that when one is found, so is the other, well, as I've read. But I'm told I don't have Archnoiditis. But other folks say don't have to be clummping scar tissue.

Man, I need to find help. As do most here it seems for cursorary glance.

Whatever it is, it is spreading.

 
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Hi new here, need help please, kinda nervous and desperate Carly928 Spinal Cord Disorders 5 01-07-2008 06:11 PM
Surgery on March 14th, I'm nervous as hell ! RM8251 Back Problems 31 03-10-2007 10:21 PM




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