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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 03-19-2007, 08:05 AM   #1
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Increasing Burning & Deep Pain

I am having more trouble with the burning...it hurts so bad. I did see my Dr last week. He increased my topamax. The more trouble I have with the burning the more I trouble I have with the sensitivy. So much that I am finding myself in tears more and more. So just in the last month the Dr has increase my catapres patch and topamax. The increase with the catapres didn't help so I will see if the topamax will help. What does everyone else use for the burning. And the deep deep pain.

Just like I told my Dr...I have learned to live with the no hair on my arms and legs..and the fingernails growing all curling downward. And changing my clothes due to the sweating..and my arms changing colors. And keeping the house 85 degrees to stay warm..keeping the heater / airconditioner from blowing on me. Doing exercises that hurt like h**ll to keep my arm moving. Take medications that make my mind alittle whacky. I have excepted the fact my mind will never be the same. I have excepted I can't do about 75% of the thing I used to do. You all get the idea.

I CAN"T GET USED TO THIS BURNING AND DEEP DEEP PAIN!!

Please tell me what you all are doing for your burning pain and the deep pain. And for those of you that have had RSD for more then 3 years does the pain ever lessen with time. Dee

I am just having a really hard time right now...PAIN PAIN PAIN

Last edited by dee_navymom; 03-19-2007 at 08:08 AM.

 
Old 03-19-2007, 08:40 AM   #2
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Re: Increasing Burning & Deep Pain

Hi Dee I take Neurontin for the nerve pain and I'm on the maximun dosage my doctor allows. I've been on it for 3 yrs now, for me it keeps me from the burning and all that pain. I also take Norco for pain and I still have some bad days every now and then. Which the weather has an effect on how much I hurt sometimes especially severe weather. Maybe you need to let your doctor know how bad it is and maybe you need to change. Some people take Neurontin and some take Lycria, it usually depends on the person one works for one but not the other. I do hope you can find some relief soon, I haven't had to deal with the burning for a while but sometimes I do get a flare up. Wish you well.

 
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Old 03-19-2007, 09:16 PM   #3
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Re: Increasing Burning & Deep Pain

Dee
I'm so sorry you're in so much pain. I didn't really get the intense burning until the spread to my feet but then I totally understood the burning sensation everyone was talking about the lidocaine patches take some of the burn out and I've also found a good soak in a hot tub calms my whole body down.
I've always had the deep pain and only have Percocet for that, it doesn't really help much just disconnects my brain from it for awhile so I can try to stay a step ahead of the pain. I'm still in search of something more effective for the pain.
I take Norvasc for the body temperature changes and it has helped alot.
I wish I could be of more help.....hang in there, there has to be something out there that will help
Jeanne

 
Old 03-20-2007, 06:30 AM   #4
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Re: Increasing Burning & Deep Pain

Thank You Jeanne and Rayefaye

Jeanne..I have tried both neurontin and lyrica but couldn't handle the side effects of either one. That's how I ended up on the cymbalta, topamax and catapres patch. I have noticed with the increase of the topamax my sweating is less that is a good thing...but the burning and sensitivity is just raging. And I think the Dr is giving me the fentaly patch and lortab for the awful deep pain...and it was feeeling better till the last week of so.

Rayefaye..I have never tried the lidocaine patch I think I will mention them to the Dr. How big are the patches? I need to cover my shoulder it is the worst of my pain..and if I could calm the area down I think I could handle the rest. I also have noticed with the increase of the topamax that my body temperature is a litte better...don't know if it is to help but I will take any help I can get. It just this awful burning and the deep pain I can't seem to get undercontrol. I agree about the weather plays a part in how we hurt...but our wearther has just been beautiful here...broke all the records this week..been in the 70's sunny. But supposed to change starting today getting down to the 50's. Who knows why I just want to hurt so bad. And here for the last few months I thought I was starting to get a gripe on it.

OK others what are you using to control your pain. Dee

 
Old 03-20-2007, 07:23 AM   #5
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Re: Increasing Burning & Deep Pain

Dee
I can't handle the neuronton or lyrica either....made me feel crazy
My Lidocaine patches are big. I actually cut them in half to put them on the bottoms of my feet. 12 hours on...12 hours off
Jeanne

 
Old 03-20-2007, 08:36 AM   #6
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Re: Increasing Burning & Deep Pain

Hi Dee and Jeanne, I'm sorry to hear that you'll can't take the Lycria or Neurontin, I know I don't what I would do without the Neurontin. But I do hope those patches that Jeanne mention will help you as it has her. I remember all to well how bad my feet, hands and neck used to burn. Unfortunately, I was in the last stages before I was diagnosed with RSD and it had progress from my legs and feet to my shoulders and neck. I do truly hope your doctor can find something to work for you especially for the burning feeling.

 
Old 03-31-2007, 05:57 PM   #7
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Re: Increasing Burning & Deep Pain

HI, I see that you are taking Topamax for your burning pain. I am also suffering from severe burning pain, in my buttocks and the soles of my feet, have had this pain for over 10 years now 24/7 (and I´m only 27!) and nothing has helped me. Now my neuro has put me on Topamax and I have been taking it for 2 weeks, but the burning pain has gotten worse and I sense heat as ice cold and something cold as burning. I was really hoping that this drug would do the trick! I have been searching the net to see if someone else is experiencing this, so have you noticed this after starting on Topamax? Do you know of anybody else ? I was wondering if I should just stop taking it ? Neurontin, Cymbalta, and on and on of drugs have done nothing for my pain.
I just cant stand this pain getting worse than it already is, how can you tolarate it ? Are you going to continue taking the Topamax ?
By the way, I have never been diagnosed, they call it just nerve pain, but from what I can see here on this forum it sure sounds like RSD.
It would be nice to hear from you (or anyone experiencing similar things)
Good luck dearest
Kristina

 
Old 03-31-2007, 06:14 PM   #8
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Re: Increasing Burning & Deep Pain

I was given Neurontin when I first got hurt and my doctors thought I had RSD a few years ago... it did absolutely nothing for me. When I was hurt a second time last year, I began taking Lyrica about 6 months after... and it too, gave me no relief whatsoever. Not with the burning, the pain itself, the sensory and temperature changes, nothing. I heard that they work for a lot of people, I hate that it doesn't work for everyone But no medication can do that I guess.

 
Old 04-01-2007, 12:14 PM   #9
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Re: Increasing Burning & Deep Pain

Hi Nichole - I have been on another thread with you. A drug that did the most for me is Clonazepam. My doctor went to a Convention in the US and got one of the leading RSD doctors (name starts with an R) to tell him to use it. It took away 60 percent of my burning pain and continues to do so. I take 3 tablets a day at .5 mg of the active ingredient and it works. I also take one Lyrica (75 mg)and one gabapentin (300) to top it up which reduced the pain another 20% and then, of course, you know I use water thereapy which takes away another 10 - 15%. But the Clonazepam has been the key to the burning pain and the water to the other pains and keeping me healthy and able to get around. Good luck. Laura.
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Last edited by aicirtapo; 04-01-2007 at 12:15 PM. Reason: Poor English

 
Old 04-02-2007, 11:48 AM   #10
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Re: Increasing Burning & Deep Pain

As I have said in a reply on this string, talk to your doctor about Clonazepam. My pain was so bad I was stuck in a recliner most of the time and Clonazepam took 60% of the burning pain away and enable me to get moving.
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Last edited by aicirtapo; 04-02-2007 at 11:49 AM. Reason: Forgot something

 
Old 04-06-2007, 04:29 PM   #11
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Re: Increasing Burning & Deep Pain

Hi Dee,
I'm able to take Neurontin and I guess it helps - who knows??? I also use the Lidocaine patches and they really do help. The only problem is when I put them on, they feel ICE cold, and when I take them off, someone has to peel me off the ceiling afterwards. But, I do get relief from them. I do 12 hours on and 12 off, too. It's worth a try. Good luck.
V.

 
Old 04-07-2007, 10:29 PM   #12
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Re: Increasing Burning & Deep Pain

Hi jessemom,

I understand how the Lidoderm patches can feel cold when applying them to your skin, as it happens to me, too, but the cold doesn't bother me much. A suggestion for a simple way to get that patch to not be so cold: before applying a patch (before peeling it off the clear plastic backing), sit on the patch to warm it up to your body temperature so that when you apply the patch, it will feel warmer and more comfortable. Hope this helps.

A doctor I used to go to told me that I can use a patch for 12 hours and then replace that patch with a new one for another 12 hours. But I don't know about that since the instructions for Lidoderm use state 12 hours on and 12 hours off, so there must be a reason for this. Anyway, a person's skin needs to breathe at some time, so I'm definitely not keeping a patch on 24 hours a day.

 
Old 04-08-2007, 06:11 AM   #13
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Re: Increasing Burning & Deep Pain

Good Morning Everyone....I hope everyone is having a painfree weekend and is able to be with friends & family.

V. Thank you for the idea about the lidacaine patches. I have read about others using them...but I can't seem to remember to ask my Dr. about them. So I do have them on my list for my next appointment.

Questions: How big are these patches? The worst of my burning pain is in my upper shoulder, shoulder blade, neck and going down my arm. Once the patch is on does the medication stuff spread out. You know what I am trying to say..or would I have to cover the whole area with patches? Are they prescription? How exspenive are they?

Know having to be peeled off the ceiling...LOL That will be a pretty picture. My big rear hind plastered to the ceiling...I can just see that know. LOL. Even Nothing else thanks for the laugh.Dee

 
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