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Old 02-05-2009, 07:33 PM   #1
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chevmal283 HB User
Newbie. Was said to have. Seems so. Questions.

I was told by ortho (I have had five major spine surgeries. all in a four year span. my last one was in 2000. I have been a mess for years) I have CRPS, or as I've recently learned, now called RSD.

I'm confused. I have read the post here about the many symptoms, and so many of them describe me. Man do my feet burn and are "pain'd" with concentrated pins and needles. Yet, the pins and needles not, um, I can't think of the word, and to think I was a student of Literature at one time. Not only place I experience them. All over, but mostly limbs.

So much more to say. For now would like to know why folks say that it comes on pretty quick after some injury. I can't say when it exactly started. All I know I was injured, in pain, surgery and surgery, more and more symptoms arose that not explained by MRIs/Cat scans--other than scar tissure and obvious nerve damage--and now so sick and about to lose gallbladder unless I figure out a way to get calcified gallstones out by flushing. I have had terrible bowel problems long before gallstones appeared though. So even if gallbladder removed, sure will still have gastro issues.

So tell me, why is it said RSD comes on quickly like after an injury to knee or elbow, etc. And is there physical manifestations of it being so found on the surface of the body?

And is it true that it is a disease that progresses in stages?

More later. Any answers/post appreciated.

 
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Old 02-05-2009, 08:04 PM   #2
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Re: Newbie. Was said to have. Seems so. Questions.

Hi Chevmal283,
I can give you my experience and hopefully that can help give you some answers. RSD is gotten from some sort of trauma to the body, whether it's surgery, a car accident, a fracture, sprain, etc etc. Instead of getting better, your pain becomes intense and instead of getting better, one becomes worse. In July of 07, I had foot surgery for a torn plantar plate. My surgery really wasn't done the best of ways, and as a result, I now have RSD. About a month passed and I continued hurting, so I would go in, and my doctor would give me injections of novacaine type stuff because he figured that would help me. Well, after a couple months of these shots, I said to heck with that and packed up my x-rays, MRI's, etc and headed up to UCLA (I live in the northern part of San Diego). I was told at that point, that I had TONS of scar tissue that had to come out, an unstable 2nd toe joint that needed a surgical fix. However, after the physical exam, he wanted me to come back down to San Diego, get a doctor to order me a 3 phase bone scan to rule out RSD. Well, unfortunately, my left foot lit up like a Christmas tree and we wanted it to be black like my right foot. Okay, so then I was fortunate and blessed to find a RSD specialist doctor here in San Diego and began the RSD journey, as I call it. My diagnosis took place in September of 07 and early diagnosis is critical for increased lessened pain. I began steroids, an extremely heavy dose for 30 days. At that point, I got on Neurontin and titrated up to 3600 mg daily. I put on 45 pounds and hated it because I've been slim all my life and I was proud of that. Well, so my confidence tanked. The Neurontin began to not work, so I was switched to Lyrica and Cymbalta, both which are nerve pain medications. I continued to see my doctor about once a month. I got some Vicodin but didn't need much of it. Okay, so then my pain increased, I got Norco (a form of stronger Vicodin) and now I am taking 4 of those daily, along with the lyrica & the cymbalta and he's recently added an anti seizure pill called trifectal, hoping to lessen my pain. After I got diagnosed with the RSD, I was sent to a neurologist for more testing. My nerves in both my legs are shot and my right foot became sore just like the left (the RSD "jumped" and "spread") so pretty much these days I have 2 sore feet and 2 sore legs but I'm doin the best I can, working my 15 hours a week in a 6th grade special education classroom and I've been working special ed for 10 years now. I've read that RSD has 4 stages, but I don't think many really pay any attention to that because everyone is sooo different with their pain experience. Not everybody responds to the same meds, and not all of us experience the same pain levels, and not everyone ends up with the severe damage. It's very nasty stuff and it's got a mind of its own and that's the scary part. I've been married for 27 years and we have 2 daughters, one has pretty serious disabilities so that's one of the reasons I truly couldn't believe it when they told me I had this horrible, life altering disorder. I'm a mom for heaven's sake and my daughter REALLY needs me for the rest of her life. I have to be able to climb stairs, I have to be able to shower her, bathe her, wash her hair, dry her hair, etc etc so my RSD better never, ever get much worse than it already is. And, my hubby is a software engineer and many many of the jobs are going overseas and being outsourced so....this year has been unbelievably stressful all the way around.
For some, touching the RSD related skin puts them through the roof. For others, touching doesn't cause any problems at all. Some are red, some are blue, some are purple. It can do damage to the muscles, but not always so do not get discouraged. We are always here 24/7, & many of us don't sleep well, and I have found wonderful, understanding, kind people here who live RSD every single day. They help me if I'm afraid, they explain their experiences if I'm unclear on something. It's just a great place to get support and answers.
Unfortunately, there are many in the medical community who have never even heard of RSD. I would encourage you to try and find someone who is knowledgeable about it. Most neuro's are, and pain management doctors are too but just be careful. ANY type of surgery can REALLY really put your pain into a flare, and you never want that. Also, never ever use ice -- It's very bad for people with RSD because it constricts the blood flow and it can do substantial damage to us.
I wish you the best of luck, take good care. Remember, we're always here for you -
Deb

 
Old 02-05-2009, 08:16 PM   #3
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chevmal283 HB User
Re: Newbie. Was said to have. Seems so. Questions.

Hey. I was just about to check out for the night. Please, I'm live in NC SanDog. I'm searching for a pain management doctor. I think I found one, but not sure. Wiltse I believe is last name. Anyway, if you have a name, please provide. I am very ill. Very tired. Eleven year nightmare. I have yet to read your entire post. Long day and have flu.

Post later.

 
Old 02-05-2009, 08:36 PM   #4
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Re: Newbie. Was said to have. Seems so. Questions.

Quote:
I have CRPS, or as I've recently learned, now called RSD.
Actually the "old" name is rsd, they changed it to crps a few years ago.

Quote:
For now would like to know why folks say that it comes on pretty quick after some injury.
Noone knows why rsd happens. That's the rub. Even though we all have the same thing, each of has a lot of symptoms the same and also we all experience "different" things. I guess I should say different levels of things.

The best explanation would be that after some trauma, usually mild, like surgery, broken bone, sprain, etc. Is that at some point the nervous system keeps behaving as if you are still injured and haven't yet healed. Thus begins the merry-go-round that is rsd. I've known one person who was electrocuted and got rsd and a guy that cut his finger on a piece of glass and got it.

They things you can see on the outside are things like hair loss, excessive hair growth, the skin changing colors, shiny skin, very dry skin, some have excessive sweating as well. In the feel department would be the temp change of the skin. Some get lesions/sores. That varies person to person as to what they look like.

The whole stages thing has been removed from the equation. The supposed "stages" that they had listed(you can still find them,they're just not used), was inaccurate simply because rsd doesn't show up like that ever. Pretty much everyone with rsd had symptoms from all three "stages" at once. They, the symptoms, are constantly changing over time. One BIG flaw was it said at the very start the skin is hot and red. That is sooooo NOT true!!! The majority of us begin with very cold skin and blue/purple/pink blotchy color skin and it remains that way. Some people who do get very red skin that feels hot to the touch mostly remain that way as well. That's where the terms "hot rsd" and "cold rsd" come from. It just refers to the temp of your skin and nothing more.

I got rsd from a broken knee that was dx as "just bruised". LOL Suuuuurrrre. I have full body and it'll be 6 years for me on the 22nd of this month.

Don't hesitate to ask any and all questions you have. It's the only way to figure out rsd, well as much as we can figure it out to begin with.

Hugs,

Karen

 
Old 02-06-2009, 08:44 AM   #5
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Re: Newbie. Was said to have. Seems so. Questions.

Hi, I have been on these boards before, but I have further questions. I have had RSD for 6 years but diagnosed only 18months ago so relatively new to this but I have another question. I had blood tests done couple weeks ago because I was having problems with my mouth, swollen tounge, burning when eating or drinking, ulcer (which is still there and i have now got to have checked out) sore throat and earache. It turns out that I have a Low Folic Acid count and I am Vitamin B12 deficient. BUT I am not aneamic which is usually the cause of the deficency I didnt realise that this was such an important vitamin - whilst reading information about B12 I read that it can cause nerve damage and on further reading that CRPS/ RSD is in the list of conditions that it can cause Now it also says that vitamin B12 can be easily treated with either tablets or injections, I will be getting injections once my doctor has done further tests to find the cause of it. How long can you be without the B12 before it shows up? So what I am asking is, has anyone else got this deficiency and is it as simple as a vitamin deficiency causing CRPS/RSD??????????????????? I had a Phentolamine Infusion in December which didnt work, I dont know if anyone else has had one? I was wondering could this have caused the B12 deficiency? Any help would be grateful. Thank you Jools xxxx

 
Old 02-06-2009, 09:28 AM   #6
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chevmal283 HB User
Re: Newbie. Was said to have. Seems so. Questions.

I yet to go to bed. I've been up for three days straight.

Why UCLA over UCSD? I ask, because I ofter wondered if I should head up, and I'm just about to call UCSD in search of digestive disease doctor and gallbladder removal doctor that I have read one good article by.

Anyway, all the meds you've mentioned, I've been on. Neurontin made me hallucinate on the night the dose was increaded by a third. Yikes. Long story. Skip it. Taken off of it. I haven't had much good happen from meds. I read last night that allergic reaction to meds an aspect of RSD. I don't know if that is the case with me. Yeah, I've been on and off of many meds over 11 years. Actiq being the most powerful.

Have more to say, but have to call UCSD and Scripps and Sharp.

Now I've just read the post from another poster above, or below, that said the "stage" deal not true. Wow. If that true. Because I found something an abstract that I think might be helpful for folk here.

I do not have skin colorin' problem. Though have strange tempature problems.
Be back later.

Good pain doc in SD? Not too many in North that I can find. Have to go south, at least from Scripps Enci down, east or west. Then there is too many to choose from.

Last edited by moderator2; 02-06-2009 at 01:09 PM. Reason: way too much quote

 
Old 02-06-2009, 10:07 PM   #7
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RoseinSanDiego HB User
Re: Newbie. Was said to have. Seems so. Questions.

Hi,
Have you had a doctor tell you have RSD? Are you in San Diego County? If so, I encourage you to see my RSD doctor. He's truly a great doc and I've been seeing him since October of 2007. Franklin Kozin is his name and he's over at Scripps Torrey Pines. He's an older man who has gone to many international RSD conferences and also has researched RSD in his past so I feel like I'm in good hands.
Hope this helps, let me know. Take good care, Deb

 
Old 02-07-2009, 10:41 AM   #8
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chevmal283 HB User
Re: Newbie. Was said to have. Seems so. Questions.

Quote:
Originally Posted by RoseinSanDiego View Post
Hi,
Have you had a doctor tell you have RSD? Are you in San Diego County? If so, I encourage you to see my RSD doctor. He's truly a great doc and I've been seeing him since October of 2007. Franklin Kozin is his name and he's over at Scripps Torrey Pines. He's an older man who has gone to many international RSD conferences and also has researched RSD in his past so I feel like I'm in good hands.
Hope this helps, let me know. Take good care, Deb
I'll check him. A surgeon told me I have it, but now wonderin' as I talk to folk here. Thanks.

 
Old 02-08-2009, 07:45 PM   #9
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chevmal283 HB User
Re: Newbie. Was said to have. Seems so. Questions.

I forgot the docs name you suggested. I've been searching here for about five minutes. I forgot where I posted info and your posting name. Sorry.

Got it now...Deb and Dr. Franklin Kozin


Below is cut from another post of yours to with questions or remarks:


However, after the physical exam, he wanted me to come back down to San Diego, get a doctor to order me a 3 phase bone scan to rule out RSD.

Did you have this exam?





After I got diagnosed with the RSD, I was sent to a neurologist for more testing. My nerves in both my legs are shot and my right foot became sore just like the left (the RSD "jumped" and "spread")

Ok, two years ago had the ENG test (it is ENG, right?)....Report says nerve damage in legs as one would see with my injury/surgeries. But didn't say nerves shot. Confused me because of the electrical pain, pins/needles and paralysis. Then read report in neuro office that the ENG not the gold standard once though it was. More confused.





I've read that RSD has 4 stages, but I don't think many really pay any attention to that because everyone is sooo different with their pain experience.

A poster here said something similar about stage thing. I had just read about it the night before of his post. Confused again.


Not everybody responds to the same meds, and not all of us experience the same pain levels, and not everyone ends up with the severe damage.
For some, touching the RSD related skin puts them through the roof. For others, touching doesn't cause any problems at all. Some are red, some are blue, some are purple. It can do damage to the muscles, but not always so do not get discouraged. We are always here 24/7, & many of us don't sleep well, and I have found wonderful, understanding, kind people here who live RSD every single day. They help me if I'm afraid, they explain their experiences if I'm unclear on something. It's just a great place to get support and answers.


Confused...

Yeah, I have to push this issue with neurologist, try obtain approval to Dr. Kazin, read more and ask more to find out what I do have or don't.

One doc thought I had Arachnoiditis. Another didn't. One doc says have CRPS, I read post here and begin to wonder.

Maybe neuro right, don't know what I have, and that is the problem with pain.







Also, never ever use ice -- It's very bad for people with RSD because it constricts the blood flow and it can do substantial damage to us.

I use ice on my back and neck for pain all the time. Yeah, I have to get this sorted out.

Blessin's to you and your family....your story of strugglin' through the pain, carin' for your daughter with needs, your husband and the fear etc etc etc, is very moving. I've lost that fighting spirit.
-
Deb[/QUOTE]

 
Old 02-09-2009, 04:28 PM   #10
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Re: Newbie. Was said to have. Seems so. Questions.

The nerve test would be the EMG, you were close! LOL

The bone scan should NEVER be used to "rule out" rsd. The bone scan will show any bone changes, like the osteoporosis, that comes with rsd. BUT just because it comes out "normal" does NOT mean you don't have rsd....it only means you don't yet have any bone changes. I had 2 done, one in July 2003 and again in July 2004, almost exactly a year apart. Both of them came back normal with no bone changes at all!! I still have full body rsd though. Luckily both docs who ordered them knew that normal didn't equal no rsd. I'd be very wary of any doc who would say oh you don't have rsd because your bone scan is normal.

In the first year I had it, I "met" a guy online who'd had rsd for 10 years at that point. He'd had many bone scans done and at 10 yrs with it, his scan was still showing up normal. It's one of those things for us that is very individual. Some of us will get rsd and have bad osteoporosis within 1-3 months and the scan is lit up like xmas. Others, like that guy and me.....our bones are tougher or something and it's taking much, much longer for the lack of circulation and blood flow to affect our bones.

Just wanted to give you a heads up about that so you're prepared.

Hugs,

Karen

 
Old 02-10-2009, 07:26 PM   #11
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chevmal283 HB User
Re: Newbie. Was said to have. Seems so. Questions.

Quote:
Originally Posted by Gaollan View Post
The nerve test would be the EMG, you were close! LOL

The bone scan should NEVER be used to "rule out" rsd. The bone scan will show any bone changes, like the osteoporosis, that comes with rsd. BUT just because it comes out "normal" does NOT mean you don't have rsd....it only means you don't yet have any bone changes. I had 2 done, one in July 2003 and again in July 2004, almost exactly a year apart. Both of them came back normal with no bone changes at all!! I still have full body rsd though. Luckily both docs who ordered them knew that normal didn't equal no rsd. I'd be very wary of any doc who would say oh you don't have rsd because your bone scan is normal.

In the first year I had it, I "met" a guy online who'd had rsd for 10 years at that point. He'd had many bone scans done and at 10 yrs with it, his scan was still showing up normal. It's one of those things for us that is very individual. Some of us will get rsd and have bad osteoporosis within 1-3 months and the scan is lit up like xmas. Others, like that guy and me.....our bones are tougher or something and it's taking much, much longer for the lack of circulation and blood flow to affect our bones.

Just wanted to give you a heads up about that so you're prepared.

Hugs,

Karen
Thank you for this. I am to call the doctor that, oh, memory loss here, I think its "Rosieinsandiego"...hey, RSD...hopefully I will be able to be elvaluated by him.

Really, thank you for the info.

 
Old 02-10-2009, 07:31 PM   #12
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chevmal283 HB User
Re: Newbie. Was said to have. Seems so. Questions.

Oh, and you sure it's "EMG"? It's ENG. Has to be. Electornic Nerve Gabget. Wink.

 
Old 02-10-2009, 08:09 PM   #13
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Re: Newbie. Was said to have. Seems so. Questions.

ROFL!!! Ya know, you're right! DOH....me and my rsd brain getting things confused again. LOLOL

Hugs,

Karen

 
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