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Old 05-26-2007, 09:25 AM   #1
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Raynaud's syndrome and RSD?

Is it possibble to have both? My uncle is a MD down in FL and has been kinda following my case. He called me this morning and asked if I have also been tested for raynaud's syndrome. Though he truly believes I have RSD but he also thinks from the pic's I sent to him i might have the syndrome too. He gave me a run down on it and sent me to a web site that has pictures of this too.


I did tell him im on the maximum does of tenex and wear a catapress patch wich both are BP lowering meds. Even though I do all this my BP runs in the 150/110 range. My liver/kidney function is within normal range for those that want to point in that direction. He said to be on stronger Bp meds and if my docs had Q's to give him a call as he treats it everyday. Im afraid of Stroke. running this high is a death sentence. My PM said put on a second patch but watch as that i dont bottom out. It was my understanding that catapress is pretty much the most violent bp med out there as far as lowering it.

BTW, Raynaud's syndrome is when your blood vessels in your extremeties spasm and constrict leading to purple cold feet and hands causing possible neuro damage and pain.

Jon

 
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Old 05-26-2007, 05:28 PM   #2
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Smile Re: Raynaud's syndrome and RSD?

Hi Jon,

I would think that it would be hard to tell the difference between Raynaud's and RSD....a lot of the same signs and symptoms (color changes, pain). Who knows?

About the BP...I've also had problems with it. One time it was 190 over something while in the doc's office so he put me on a BP med. I was fine on it for a while and then all of a sudden, one day I passed out because it was too low. I think the RSD can cause it to be very volatile, you know? So, if that's the case, it can be hard to treat because you never know where it's going to be at different points. It's all SO frustrating!

Hang in there!

Sharon

 
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Old 05-26-2007, 06:48 PM   #3
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Re: Raynaud's syndrome and RSD?

Jon and Sharon,
I too was diagnosed with Raynaud's and have had blood pressure problems- maybe they do have something to do with having rsd. I once went to a psyaitrist (have no idea how to spell it), but he said I had it along with the rsd and I have been on blood pressure medicine and now I am off because it was in normal range. I have been off of the bp meds. for a while and I have a home testing cuff and monitor it from time to time. It has been fine, but when I went to the pain clinic 2 weeks ago it was high again and I have never had a problem with my pb until I had rsd. They kept telling me it was because I was in pain and that naturally raises it.
Jon do you know if it is possible to have both or if there is any way to test for it? I wonder what made my doc diagnose me with both. I smoke and I know that is horrible for nerve problems and raynauds but these days it is the only thing that relaxes me and I know that sounds so ignorant, but quitting is so hard right now. If you guys get any more info please let me know...thanks Nikki

 
Old 05-27-2007, 07:06 AM   #4
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Re: Raynaud's syndrome and RSD?

hey jaxo


Im not sure on the test part. Im thinking there is a way to test for this but im not sure how they could possibly differentiate between the two. my left leg (affected) is always purple mostly in the knee and top of my foot. I think what he was getting at was my right foot is also slightly purple but not nearly as bad. I dont have any pain or wierdness happening over their yet and pray nothing does. I am though going to bring it up to my pm doc and see what she says. Regardless I always get a call on memorial day from him. have ever since I got home. I will bring it up and see what he says

Yes, I too smoke and get chewed out by my fiance,doctors and my uncle. I know they all have valid points especially on the RSD issue. One thing that is intersting I have learned is what it is like from a Md's perspective, is what it is like to treat a CP paitent but i guess that should be a different post.

I want to quit smoking but its been my crutch through stressful situations and like you, really relaxes me. If this nerve ablation goes well (the temporary type) and I lower my meds im going to go for it. With smoking its all or nothing for me.


Jon

 
Old 05-27-2007, 07:15 AM   #5
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Re: Raynaud's syndrome and RSD?

hey sharon! been a little while


Yeah the bp even when my pain is low runs high. im usually in the 120/80 range wich I assume is normal. But on 3mg's (max) of tenex and .1 of clonidine you would think my bp would fall a little bit.. From my memmory this didnt start until after the rsd buisness went on. it just goes crazy Im going to ask for oral clonidine and take it that way versus transdermal and see if that works or not.


jon

 
Old 05-27-2007, 09:54 AM   #6
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Re: Raynaud's syndrome and RSD?

Jon,
Thanks for the reply, and I am going to ask my pm as well. I had a question for you though- has your foot/knee ever gone in remission and how bad has it gotten? (ever I mean) This foot thing is going downhill really fast and I am wondering if it does that when it spreads to other areas. I went from slight soreness to totally incapacitated in less than two months and the swelling just wont let up. My foot is deformed and the skin is falling off. The knee is on and off though. One day it can be really swollen and the next feeling pretty good but the foot is stuck and no matter what I do it is just stuck in that horrible rsd place where nothing works. Have you ever gotten a mylogram?
About the smoking- and I am not defending it and I know it is horrible- I quit for over a year and there was no change with the rsd. I know it helps nothing and I will not defend it ever but for me the rsd was blown up without the smoking as well. It does relax me too, I quit a few times but it was hard working with inmates who constantly lit up. Plus stress is my number one reason of why I enjoy it. Hope you are having a good day...Nikki

Last edited by jaxobean; 05-27-2007 at 09:55 AM.

 
Old 05-27-2007, 05:52 PM   #7
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Smile Re: Raynaud's syndrome and RSD?

Hi Guys,

Jon, I take 2.5 mgs of Altace (oral) which is a bp med that can also protect the kidneys (I have Type 1 diabetes which can affect the kidneys so they're trying to keep them okay with the Altace). I was on 5 mgs when I had that high BP reading and was fine on it for about one year, but then passed out as I told you. I just think it's weird that you can have such a high BP one day and be fine the next and can only attribute it to the RSD and it does make sense as the sympathetic nervous system can affect the BP. I saw a cardiologist after the passing-out incident and he actually knew something about RSD (shocker!) and he thought the variations in BP could very well have something to do with the RSD.

Have a nice weekend, everyone and Happy Memorial Day!

Sharon

 
Old 05-27-2007, 08:58 PM   #8
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Re: Raynaud's syndrome and RSD?

Hey jaxo,


Mine is a constant pain.. its worse when I work or get extremely angry which both go hand in hand. lol my leg now changes color when I awake its purple then changes to red and occasionally while changing goes to normal pink for a brief period of time. I have had a few days of relatively no pain. Its funny how on those days I change back to my oldself. I play video games, take my better half to dinner and what not. no remission yet.

On June 4th I get my nerve ablation so im excited to just get it over with. On paper this sounds like the golden ticket for me. The majority of my pain is SMP controlled so this im praying will knock it out. Though this will only last about 6 months im hoping for the best... She is only going to do this twice and then on too the SCS whether i like it or not as there really isnt anymore options... Well the pump. I think I might stray towards the pump versus the SCS. Sharon if i remember right has raved about the pump


Sharon,

im pretty sure you have the pump if not im sorry. But how long did it take to dial that thing in? I mean as far as getting the right dose at the right time and what not?

 
Old 05-28-2007, 05:18 PM   #9
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Hi Jon,

Yes I do have a pump and just had my sixth anniversary last week with it . It didn't take long at all to get the right amount. My doc converted my oral meds to the equivalent that I'd need through the pump. I've had some increases in the past six years, but not too many. As I've said before, I think the bupivacaine helps more than the morphine...makes sense, right? It's the same type of med that they give you through the blocks. Any other questions about it, let me know.

Sharon

 
Old 05-28-2007, 06:48 PM   #10
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Re: Raynaud's syndrome and RSD?

Sharon,
Can you tell me more about this pump? I have been on meds for almost 11 yrs. and I need to ask again for a liver check. I wonder what shape my insides are in. Why do they put it in- is it because they do not want the meds to damage the organs? I am sorry if it sounds like a stupid question I have just never known the reasons and I know many have them or are getting them..thanks and sorry if it is stupid my brain is mush...nikki

 
Old 05-28-2007, 09:58 PM   #11
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Re: Raynaud's syndrome and RSD?

Quote:
Originally Posted by sharon1030 View Post
Hi Jon,

Yes I do have a pump and just had my sixth anniversary last week with it . It didn't take long at all to get the right amount. My doc converted my oral meds to the equivalent that I'd need through the pump. I've had some increases in the past six years, but not too many. As I've said before, I think the bupivacaine helps more than the morphine...makes sense, right? It's the same type of med that they give you through the blocks. Any other questions about it, let me know.

Sharon
OMG! if I could just get the pump with marcaine or bupivacaine I would just love life. I had Marcaine for the blocks and it always worked all 6 times. Even went in while having a nasty little flare up and as soon at she got to the sweet spot and injected the stuff it was pure warmth and pain melting away. Love i tell you love! LOL

I want the pump before i play with a SCS... I would be way to active for the scs as i have heard to many stories about the lead issues. when the pain is gone its kinda like dr jeckle and Mr. hide.. Im a totally different person.

Congrats on your sixth year! I think the pump would be harmless as you dont get intoxicated while on it if im correct. Did you have alot of discomfort right after the immediate surgery? do you build tolerance as fast as you would with oral pain meds? whats the refilling like painful or does it feel like a normal shot? theres a few of my burning questions. Thanks Sharon!!!


Jon

 
Old 05-28-2007, 10:27 PM   #12
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Re: Raynaud's syndrome and RSD?

Jon,
You are having a good day aren't you. If I had to guess you are doing good because you are cracking me up with your posts. I asked Sharon about the pump and wish someone told me it was an option. I have never heard of it until this post. People would ask me if I had a pain pump but I had no idea what they were talking about. You can actually get that instead of the stimulator? Nice I knew my options huh. Have you ever heard of the pump spreading the rsd? Just by the questions you asked Sharon you answered a lot of my questions about it.
Was going through records to help my lawyer prepare and notice several references to Raynaud's. Orthopedist and Psyatrist both said they thought I had it coupled with rsd.
Quick question have you ever had stiffness in the knees? Like it is bone on bone? I have been having it for years and cannot figure out what it is. I do not think it is rsd, well was anyway now I know it is in the left because I am displaying all symptoms in left knee. Do you know anyone with that problem? I am wondering if it could be something to do with the rsd...
Are you getting the pump? My opinion is to get that before the stim, I wish I knew about it before getting the stim. installed. You do not want to chance it getting worse or spreading. In hindsight who knows but I would much rather have it in the arm than the leg that is for sure...Hope you have a good night. My pain is up real bad today. Worst yet in the leg, and nothing is helping...Hopefully tommorow it will be better...Nikki

 
Old 05-29-2007, 06:15 AM   #13
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Re: Raynaud's syndrome and RSD?

hey jaxo,


My knee cap feels like it is no longer floating around. I have chronic tendonitis. I havent been offically Dx with it but from being in the service i would get it from time to time so im familiar with the pain of it. The muscles around my knee kill and on the inside is really showing now with atrophy. range of motion is diminishing. All I really can say is it is a volital zone down there.

My PM is nice to me because my primary doc knows me very well and i assume gave me a good refrence. going to her office i hear her in other rooms and she is very professional versus as soon as she walks into my room she lets it all hang out. She has this thing with options i have noticed... usually presents 3 explains pro's con's and lets me choose. Ther ablation im fixing to go through is my doing. It was my choice so im content. If it fails I already know my next set of options. She explained she tried this with me in efforts to lower anxiety as to what happens next. The pump is in my next set of options.


Even though I hurt I try to keep my humor. I hate my job, cant ride horseback,and I got some strange rash on my right elbow.

Jon

 
Old 05-29-2007, 09:07 AM   #14
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Re: Raynaud's syndrome and RSD?

Jon,
I have a funky rash as well almost blister's. I hate going outbecause everyone just looks at this foot with such disbelief. I am used to it but it is so uncomfortable. I am constantly saying yes it is nerve damage. People wonder why there is no cast on it because my ankle look so severly broken.
Some thing is going on with the knee and it has been going on forever. Put Bengay on it and that seemed to make things much worse. I was mentally feeling really good but now I am going into that hole again and I hate that.
I know what you are saying about the choices at the doctors. My knew doc. is like that and I love it. I know if I was uncomfortable doing something he would not make me, but he explains the whole situation to me and tells me his reasoning. He is great, and that is one thing to be really thankful for.
Going back and reading this I am all over the place might be a good idea to just sit back and read the posts and not reply. I am not making any sense right now. Thanks for the reply Jon- Hope things start looking up for you...Nikki

 
Old 05-29-2007, 10:17 AM   #15
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Re: Raynaud's syndrome and RSD?

Hey Nikki-

About the knee.... I have had the same grinding feeling in my knee since July 06. They scoped it in October and didn't see anything. They did a lateral release (cut the tendons that encase your knee cap) to try and loosen up my knee cap. My knee cap moves very easily now, but still have the pain in my knee and now calf, ankle, and thigh. They diagnosed RSD in January and now they think that it may have been RSD from the very beginning.

It makes no sence to me. How do you wake up one day with knee pain and end up here when I never injured the knee at all. And I agree with you, I think I would rather have it in my arm than my leg (its my driving leg!).

I hope this helps you! You all help me every day!!

Sherry

 
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