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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


From the symptoms that you mentioned that you have, I would say you have RSD. The reason I say this is because those are some of the very same symptoms that I suffer from.
My RSD started out in my right foot after I had bunion surgery a little over three years ago. Now it has spread up to my knee, over to the left foot and up to that knee. And just recently it has spread to both of my wrists.
I have extreme swelling in my right leg and foot. The left foot does swell but not as bad.
I am in pain every minute of everyday. It's just that some days are a lot worse. So much so that I am just not able to move around at all. Those yucky, yucky days effect me on the average two to three times a week. Oh yeah, how could I forget the sweats! The lovely sweats that I get so many times a day I cannot count them. I also have the red hot feelings in my feet and legs.
I do not however suffer from my legs or feet being cold. Sometimes they are shiny but that was happening more when I was first diagnosed with it.
The purple coloring was also more prevalent in the beginning. Not that my feet do not ever turn colors, just not as much.
How long have you had RSD? Are you seeing any one of those four doctors consistently now? Are you able to work yet? Not me:( I was never able to go back to work after my bunion surgery. Luckily have been approved for SSDI on October 9 of this year :)
The tenderness is still with me. And I can't tell if that isn't as bad or if I am just getting used to it. I know one thing for sure though and that is I have not gotten used to the pain levels!
Let me know if you have any other questions.
Take Care,
Chris
Wow ! I am so relieved (well, you know what I mean) to read that others have more facial hair since being diagnosed with RSD.
Sometimes my face burns (my tongue, the roof of my mouth, my nose!! although my rsd is in my left foot and leg and now in my right foot and leg with the burning...)
and I noticed more facial hair above my upper lip and also my eyebrow hairs looked so much longer and more profuse. So I guess I'm not the only one!! I have to use one of those little groomer hair removers to keep my upper lip smooth. What's next, a Remington???
Chicubs, thanks for your humor, I , too, have to learn to find humor in all of this because I am trying to keep sane !!:dizzy:
I have a question about going to the dentist...I have to go to the dentist for my cleaning, but I am afraid to go...when they probe the gums, they sometimes bleed and then when they clean the teeth, it is some times 'invasive' Is it OK to go to the dentist with RSD for a cleaning or can this cause it to spread???

Also, is it OK to sit in a hot tub or will this cause a major flare-up??
Thank god for this message board and for all of you!!
many, Many hugs,
Tigerlily
[QUOTE]I have a question about going to the dentist...I have to go to the dentist for my cleaning, but I am afraid to go...when they probe the gums, they sometimes bleed and then when they clean the teeth, it is some times 'invasive' Is it OK to go to the dentist with RSD for a cleaning or can this cause it to spread???

Also, is it OK to sit in a hot tub or will this cause a major flare-up??
Thank god for this message board and for all of you!!
many, Many hugs,
Tigerlily[/QUOTE]

On the dentist thing, you should be ok for cleanings. I've not heard of anyone having spread from a cleaning. If you're concerned and it hurts for them to clean your teeth in a spot or two, maybe they can rub on some numbing stuff, on the gums to make it easier.

I haven't gotten in a hot tub, but my bath water is like a hot tub! LOL I make it HOT!! It feels so good for me and hasn't ever caused a flare. I say if it feels good then do it. If you don't deal well with heat then don't do it or at the very least limit your time. Those of us with cold rsd, ie the limbs being cold to the touch, it's the cold that will have us flaring and hurting more while heat feels good. Of course there's no rules but I've not heard from many who do well with the cold and have cold rsd. Hot or warm rsd likes cold but even there it can cause pain too.

You have to go with what feels good for you.

Hugs,

Karen
I'm a walking encyclopedia! ROFL I feel that way at times because I'm one of those people....and you sound like one too.....that just has to find out the why of everything and will research something just for the heck of it. :) I know when I first started out with rsd all I wanted was to understand why. So, I read those boring, dry medical articles and whatever else I can get my eyes on and break it down into plain english if I can. I want everyone to understand because I find it helps with adjusting to it all.

As to the burning we feel, it's the sympathetic nervous system. Every nerve in our bodies are misfiring and damaged. It's the same reason why we are so sensitive to touch and air. Everything is so over stimulated and in a state of high alert and this causes our bodies to perceive a stimulus as painful when it shouldn't be. We have serious sensory overload. It's the damage to the nerves more than anything that produces that burning sensation.

If you stop to think about the burning, have you ever noticed that the burn happens more when your pain level is higher? Had site specific burning where you felt a lot of pain at? I'm not saying that it's that way every time, but there's usually a pattern to things if you stop and think carefully or document what you feel so you can see the pattern.

Most don't know that after having rsd for 6 months, nerve endings become damaged permanently. Hence, the longer you have it the more damaged endings which in turn help absolutely nothing! LOL I think this is a big reason why it becomes difficult, if not impossible, to put it into remission or have any treatment that works, like blocks. Sometimes blocks don't work because the pain has already gone independent. I believe, in my case, it went that way pretty fast. I had uncontrolled pain due to no pain meds, which I think also helped it to spread so fast in me, so with everything raging inside me, my system went into overload quickly and didn't stay sympathetically maintained more than the first few months. Of course I can't "prove" it but I don't see any other explanation for it!

Did I explain well? LOL Sometimes I'm not so sure if I do or not. :D

Hugs,

Karen
I wouldn't want to risk having a total knee replacement knowing I'd face it again in 2-3 years! To have a surgery, any surgery with rsd is seriously high risk and could cause spread as well as a huge flare up in pain overall. That is the problem with the SCS. I can literally count on one hand the number of people I've talked to the past years that had no spread from getting the SCS and that had it work effectively on the pain longer than 6 months to a year. This is one subject I get rather passionate about because I've seen so many go through with it only to suffer multiple surgeries because of leads displacing,infection,spread. I guess what it comes down to for me is trying to spare others from more pain. I also want to give everyone the straight facts, risks and all so they can at least make the most informed choice about what they ultimately do. Each person can decide for themselves what happens when it comes down to it.

I'm so very glad you're still with us after going off all those meds like that! *hugs* Definitely not something anyone should ever do. Speaking of which i did read your other post and you mentioned your health, being run down, etc. The rsd, the pain does have an effect on our health overall. When you're constantly fighting pain you don't get the deep REM sleep where deep,restful sleep occurs. RSD can also affect our immune system and being run down also contributes to always being sick and catching every little thing that comes along. I've found that almost all of us are the A type personalities. The go get em, on the go, seriously active people who barely slowed down to sleep! LOL It's no wonder we resent the enforced inactivity and the pills.....oh my....I, like pretty much everyone else, barely took an aspirin for anything before. My opinion is I'll take what I have to to keep my pain down so I can have a life. I also know that taking the meds leads to tolerance and is our number 1 problem. As you said, it only leads to higher doses and more pills. With this crud we live with, there is no way to win and we can only try to do what's best for ourselves, take care of ourselves and I think most of all, be kind to and love ourselves. :) Oh....let's not forget, laugh!! Laugh a lot every day. My wicked sense of humor has saved me.

How old are your kids? I have 4 myself. A son who is 20. He was just married to his soul mate back in May and is in Iraq right now. We all miss him so much and can't wait till he comes home again!

My daughter is 19 and is currently 3 months pregnant with my first grandbaby!! :D :D :D I'm so excited that I can hardly wait for the next 6 months to fly by. I'm, of course, going to be there when the baby is born.

My other son will be 18 this coming April and has a great future as an auto mechanic. :)

My last, but not least, daughter will be 15 in Feb. She's a kick butt artist. :D LOL I can't believe how fast they grew up on me. I'm 39 now by the way and had my 1st at 18. lol I got it all over with early. Glad I did too!

Ok.......sorry this got so long but welcome to our corner of the world. I look forward to "talking" to you more!

Big Hugs,

Karen
Wow.....so happy to hear about your son!! That poor guy went through so much!! Kids are totally amazing!

My 1st advice is to find another pain doc asap!! He obviously had no regard for you as a person let alone a patient! People like him make me sick. Has he even treated other rsd'ers? Seems like he hasn't. It's obvious that he will never give you the proper, caring treatment you need so desperately. Wish you lived near me cause my doc is super awesome!!!

As for vits and minerals. Vitamin C and grapeseed extract. I read a study some docs did and patients with a broken bone were given either placebo or vitamin C at a dose of 200 mg, 500 mg, or 1500 mg daily. 10% of those given placebo developed RSD, while less than 2% of those given vitamin C in the 500 mg or the 1500 mg daily dose did so. The 200mg had some results but not enough which is why they left it off the statistic part at the end. So, not sure really if it makes a difference after the fact, but I know quite a few people who take daily vitamin c supplement and they say it helps. It reduces inflammation and pain.

Grapeseed extract helps prevent spread. There are many who take this and it's proven quite effective. A member who died a few months ago began taking it to see if it would work. He then stopped taking it to see what would happen. It wasn't long before he felt rsd pain in new areas and began taking it right away. The other pain stopped and didn't spread! :) It's worth doing this one for sure.

Magnesium helps with muscle spasm and weakness. Calcium is good for the bones and also aids in neuromusclular activity. We all need extra calcium anyway with rsd because it gives us osteoporosis. Vitamin E (antioxidant, maintains healthy nerves) and then
vitamin D for muscle spasms and pain.

Those are all the ones I've seen mentioned over and over that really seem to help. We need all the help we can get! LOL

Hugs,

Karen
It sounds to me, in my non doc opinion lol, as if the slight spread lead to the rsd spreading to your hand.

I have had tendinitis myself and you do NOT do surgery for that!!! Tendinitis can only be treated with rest and anti inflammatory drugs like Ibuprofen. Now carpal tunnel is treated by doing surgery but only after every other treatment has been tried. This doc is out of his freaking mind talking surgery!!!!! DO NOT DO IT!!!!

Surgery should not be done unless it's a life or death situation, or there's a problem that is going to cause even more problems and nothing else has worked so surgery is the only option left. Something like a knee replacement or hip replacement. There is a HIGH risk of spread with surgery. There are precautions that can be taken if surgery MUST be done. Having a block done before and after surgery,adequate anesthesia during surgery and a pain pump for a few days after surgery so the nervous system will remain calm and not cause a flare of the existing rsd and will hopefully not spread to the surgery site.

There are people who have had surgery with rsd,did not get spread or a flare because they took these precautions. The surgeries they had though were necessary and in the end you just have to hope it'll be ok.

So, tell the doc NO WAY to surgery for tendinitis. *snorts* Yeah......me thinks he needs to go back to medical school and re-learn the proper treatments for minor things.

Hugs,

Karen
I have some concern .. My hands is still swollen, In the last week I find my wrist and arm and little pain in my neck.. Not sure how much pain because of the pills I'am taken.

It's a good thing that the pain meds are keeping the pain down. Letting the pain go out of control can make the rsd spread faster,IMO. The pills are keeping the pain down,if you were to stop taking them, the pain would come back full force. You don't just "heal" from rsd.

It's unfortunate and a harsh truth, but once you have rsd, you have it for life. You don't "get over it", it doesn't go away on it's own, it can spread. There are docs out there who aren't that knowledgeable about rsd and will say it'll go away, it can't spread, work through the pain.....Ummmm, all wrong! If you're lucky you can get remission. The sad part is very few people actually get remission. Blocks are a good start for sure and the sooner they start the better. You need to catch the pain while it's still SMP or sympathetically Maintained Pain. Once it becomes SIP or Sympathetically Independent Pain, then blocks will not help or do any good.

Call the doc's office and ask about the appt, persist until you get an answer from them. If possible, find another pain doc who does blocks and can get you in asap.

PT either helps or makes things worse for us. There doesn't seem to be any middle ground. You must use the hand or risk losing the use of it completely. If you have a lot of pain after doing pt or high pain during, then you are probably doing too much. PT for us needs to be slow and gentle. That old saying, No pain,No gain.....it does NOT apply to us. You need to find where your limits are. Only you know how you feel, how much is too much that makes you have more pain. No one else can know what your limits are. You have to say I can't do anymore, I'm in a lot of pain and it's too much. We have to educate ourselves and put our foot down with these people and say No. Remember, they work for us, not the other way around. No one can make you do anything.

Hugs,

Karen
I'm glad you don't plan it, but it really is all about learning as you go. We have all been where you're at. It's a sad fact that it won't go away and unless you go into remission, you'll need the meds. I recommend taking grapeseed extract. It's good for a lot of things and may help prevent or at least slow down spread. Vitamin C is good as well. Just something for you to keep in mind whenever you are able to get it. I know all about not having money. I hope you don't lose your place. Have you gotten a lawyer? They should have been paying you long before now! It's the one thing you need to do right away, cause no one can deal with wc on their own. Let a lawyer handle it.

I'm right handed too. I have rsd pretty much everywhere so I understand the frustration you feel. The only place I don't have it is in my chest,neck and face. All the rest of me deals with it. :)

You can talk about anything on here. Just can't post any personal info such as email addy,phone number or stuff like that. You can tell all about how,why stuff happened,anything.

Yup...those good days that make you feel kind of nuts. I went through that as well. I hope you get treatment going soon because it's still early for you and that's very important. Look into the lawyer if you don't have one already. I'll be thinking of you and hoping tomorrow is a really good day for you too!

Hugs,

Karen
[QUOTE=walleye77;3825426]With everything I have read on rsd and Doctors you can't find to help treat this disease I get more confused each day. I had 4 doctors tell me I have it, one neuro that said she treated patients with rsd then 2nd appt said I would be better served with pain management. The neuro I have now is questioning if I really have it as he said the feet weren't cold this visit. Then the god awful sweating which I thought was female related until reading some posts.
So do you have to have discoloration (blue) to truely have rsd? The hot, red swelling aching foot is what I get on a daily basis. Tender to touch on some days, then others it fine. The smooth skin, I thought it was because the foot had been in a cast for 3 weeks back in july, Its still shiney and smooth. The stiffness when you get up and walk on it. the other one doesn't feel stiff. So you can see I have many questions, any suggestions would be appreciated.:wave:[/QUOTE]
Hi. I injured my arm and had a nerve injured with surgery. I have RSD in arm which my hand turned mottled purple and cold. It has spread into both feet and left lower leg but my feet get hot and turn red and warm and my ankles swell at times, but not all the time. Thats the why RSD can be difficult to diagnose because you may see one Dr. and limb might be hot or cold and next time you see a different Dr and he may see nothing. I am treated by a pain management Dr. D





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