Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 12-26-2012, 04:30 PM #1
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Angry Side effects of med or procedure?

OK we all know lyrica causes drowsiness....so do alll my other med.s currently I'm on Lyrica 50mgs 3x a day. Amitriptyline 50 1x a day and tramadol 50-100mgs up to 4xs a day. The Sympathetic block was 50/50 Lidocaine and Bupivicane. Oh and Promethazine 50mgs every 4-6 hours as needed.


These are my symptoms....extreme drowsiness...to the point where I almost always feel like I'm going to fall asleep wherever I am. I can barely get the energy to work,clean,drive, anything. No matter matter how much sleep I get. Acid-reflux/Gerd type symptoms. very severe. Pressure in esophagus and bile rising up to mouth. And that happened only AFTER the nerve block, but the nurse there doesn't think they are related? Until I saw a different provider at my doc's office on Monday who gave me the promethizine...which causes MORE drowsiness.

I have been having blood clots after bowel movements. Not to be icky but quite a bit of blood in bowl bright red then very dark red clots AFTER bm. Not really big sometimes dime sizes some times about the size of a grape (small).
No extreme pain or itchiness like you get with hemorrhoids though i did have a very small flare up of them about a month ago? But this doesn't feel like that.

Basically I feel like completely crappy. The pain is heightening again and the Anesthesiologist's office said to see my PCP, who didn't know what to do and referred me to the anesthesiologist......grrr.
Said if symptoms get "really worse" to go to E.R.

So they have NO CLUE what to do!!! Fun. Have any of you had ANY of these problems. I am staggering the meds as best I can due to drowsiness but can only do so much......



Oh and someone siphoned the gas out or our Suburban last night......grrr
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Old 12-26-2012, 04:33 PM #2
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Oh I am taking Prilosec twice in the morning.....not really helping much
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Old 12-26-2012, 08:37 PM #3
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Hi Emily

If you weren't feeling constantly drowsy in the extreme, there would be something wrong with you!!!

Every single drug you are taking orally has drowsiness as a common side effect. The promethazine is used (amongst other things) as a pre-operative sedative because it causes such excessive drowsiness. It won't matter how much you sleep, you will still feel knackered and exhausted unless/until your body adjusts to the side effects of the medication. I'm not sure why you were prescribed the promethazine - it has many uses - but it may be one sedative too many!!

You need to push to get agreement as to which doctor is going to take the over-arching management of your medication. You need to force them to agree who is going to have the principal role in your prescriptions. It is not acceptable to tell you to go to the ER if you cant cope - thats just them dumping the problem elsewhere and not taking responsibility as they should. In addition, this is the start of a journey with a chronic pain condition. It's not manageable via regular visits to an ER department whencyou are atvthe point of being too distressed to cope. It requires a quite different form of long term management which they have to help you with - that is what they get paid to do.

Then you need to discuss and consideration your doctors:

1. revisiting the dosages of the medications and consider dropping the doses back down with a view to then increasing each one much more gradually to see if your body is able to cope better with the side effects via a much more gradual ramp-up;

2. Revisiting the total number of drugs and potentially stopping one or more of them, perhaps temporarily, until you can get a grip of the drowsiness and it subsides as your body gets used to the drugs. You could then add the meds you stopped back in one at a time with a very gradual ramp up to see if you get fewer side effects; or

3. Determining which of these drugs are actually having a sufficient effect on your symptoms to live with the levels of side effects and stopping anything that isn't working or anything where the awfulness of the side effects outweighs any benefit.

I think I mentioned that this is a long process and that goes for testing out the different drugs and giving them long enough in your system to see if your body adjusts. Sometimes no matter how slowly you increase the dosages, there are drugs that your body doesn't adjust to. Sometimes the relief you get is just not enough to make the side effects worthwhile. Only you can make those judgements because only you can determine how much relief you get from each one and what level of side effects you can cope with. Don't give up too quickly though - you could miss out on a really effective drug because you didn't persevere for a few weeks or months to let things settle.

It sounds as though you have been prescribed the Prilosec to protect your stomach and deal with the reflux issues - it is a proton pump inhibitor and its common practice to prescribe these drugs with anything that has a risk of irritating and damaging your stomach lining. It is a sensible precaution to take this to prevent ulcers or bleeding. It should kick in to settle the reflux type issues you are having.

I would have thought it very unlikely that the sympathetic nerve block had anything to do with the reflux issues. The fact is, you have started on a whole series of new medication just around the time of the block and it can take a few weeeks for a new drug to cause enough irritation for the reflux type symptoms to start presenting. If they go on for any length of time then it is also more likely to be the oral medication than anything to do with the sympathetic nerve block.

Have you told your doctor about the blood in your bowel movements?

Remember that drugs like tramadol are constipating and constipation is the one side effect that your body will not normally adjust to with opiods, no matter how long you take them. Many people have to take some kind of laxatives if they use opiods long term. It may be that the blood is being caused by constipation/straining especially if it is bright red. However, it could be related to one of your other drugs or it could be something totally unrelated, especially if you have a history of haemorrhoids, so it makes sense to just talk to your PCP about this.

It's not a surprise that the pain is increasing as time moves on after the sympathetic block. That is what happens for very many people. Increasingly there is a view emerging in the literature that they have limited pain management value for rather too many people and the value is more as a diagnostic tool. There is also the issue that if the block is not placed absolutely correctly it will be useless anyway. That is why it is bad practice not to do them under continuous fluoroscopy. You and the specialist who administered it will need to decide between you whether it is worth doing more of them. It's unusual to have a block with 2 anaesthetics but no steroid - that is usually included too.

Sorry this is long but read it and then come back to it to re-read and digest it. Your posts read as though you are in quite a state of anxiety - it's very hard but i promise, that will be making your pain considerably worse so you need to try and take a deep breath, digest all the advice from everyone, remember this journey is a marathon not a quick fix and try to be calm and not panic. If there is anything else just ask.
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Old 12-26-2012, 10:04 PM #4
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Quote:
Originally Posted by Neurochic View Post
Hi Emily

If you weren't feeling constantly drowsy in the extreme, there would be something wrong with you!!!

Every single drug you are taking orally has drowsiness as a common side effect. The promethazine is used (amongst other things) as a pre-operative sedative because it causes such excessive drowsiness. It won't matter how much you sleep, you will still feel knackered and exhausted unless/until your body adjusts to the side effects of the medication. I'm not sure why you were prescribed the promethazine - it has many uses - but it may be one sedative too many!!

You need to push to get agreement as to which doctor is going to take the over-arching management of your medication. You need to force them to agree who is going to have the principal role in your prescriptions. It is not acceptable to tell you to go to the ER if you cant cope - thats just them dumping the problem elsewhere and not taking responsibility as they should. In addition, this is the start of a journey with a chronic pain condition. It's not manageable via regular visits to an ER department whencyou are atvthe point of being too distressed to cope. It requires a quite different form of long term management which they have to help you with - that is what they get paid to do.

Then you need to discuss and consideration your doctors:

1. revisiting the dosages of the medications and consider dropping the doses back down with a view to then increasing each one much more gradually to see if your body is able to cope better with the side effects via a much more gradual ramp-up;

2. Revisiting the total number of drugs and potentially stopping one or more of them, perhaps temporarily, until you can get a grip of the drowsiness and it subsides as your body gets used to the drugs. You could then add the meds you stopped back in one at a time with a very gradual ramp up to see if you get fewer side effects; or

3. Determining which of these drugs are actually having a sufficient effect on your symptoms to live with the levels of side effects and stopping anything that isn't working or anything where the awfulness of the side effects outweighs any benefit.

I think I mentioned that this is a long process and that goes for testing out the different drugs and giving them long enough in your system to see if your body adjusts. Sometimes no matter how slowly you increase the dosages, there are drugs that your body doesn't adjust to. Sometimes the relief you get is just not enough to make the side effects worthwhile. Only you can make those judgements because only you can determine how much relief you get from each one and what level of side effects you can cope with. Don't give up too quickly though - you could miss out on a really effective drug because you didn't persevere for a few weeks or months to let things settle.

It sounds as though you have been prescribed the Prilosec to protect your stomach and deal with the reflux issues - it is a proton pump inhibitor and its common practice to prescribe these drugs with anything that has a risk of irritating and damaging your stomach lining. It is a sensible precaution to take this to prevent ulcers or bleeding. It should kick in to settle the reflux type issues you are having.

I would have thought it very unlikely that the sympathetic nerve block had anything to do with the reflux issues. The fact is, you have started on a whole series of new medication just around the time of the block and it can take a few weeeks for a new drug to cause enough irritation for the reflux type symptoms to start presenting. If they go on for any length of time then it is also more likely to be the oral medication than anything to do with the sympathetic nerve block.

Have you told your doctor about the blood in your bowel movements?

Remember that drugs like tramadol are constipating and constipation is the one side effect that your body will not normally adjust to with opiods, no matter how long you take them. Many people have to take some kind of laxatives if they use opiods long term. It may be that the blood is being caused by constipation/straining especially if it is bright red. However, it could be related to one of your other drugs or it could be something totally unrelated, especially if you have a history of haemorrhoids, so it makes sense to just talk to your PCP about this.

It's not a surprise that the pain is increasing as time moves on after the sympathetic block. That is what happens for very many people. Increasingly there is a view emerging in the literature that they have limited pain management value for rather too many people and the value is more as a diagnostic tool. There is also the issue that if the block is not placed absolutely correctly it will be useless anyway. That is why it is bad practice not to do them under continuous fluoroscopy. You and the specialist who administered it will need to decide between you whether it is worth doing more of them. It's unusual to have a block with 2 anaesthetics but no steroid - that is usually included too.

Sorry this is long but read it and then come back to it to re-read and digest it. Your posts read as though you are in quite a state of anxiety - it's very hard but i promise, that will be making your pain considerably worse so you need to try and take a deep breath, digest all the advice from everyone, remember this journey is a marathon not a quick fix and try to be calm and not panic. If there is anything else just ask.
Hi Emily, So sorry you are feeling so badly. I've had RSD 16 years, but not diagnosed for 5 years, so haven't had block or Gerd or blood issues. Have had the extreme drowsiness from over medication and that is a terrible feeling too.
I agree with what neurochic said about one dr. and your medication schedule and what works for you. Hope you find some relief soon. Please know we are thinking of you and hoping you will find what works best. loretta
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Old 12-26-2012, 10:35 PM #5
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Emily,

Many meds; especially narcotics, cause constipation and the need for frequent laxatives. But, wouldn't brush off the blood clots with BM as possibly from hemmorids or straining. Have you had a colonoscoopy??

I am on a high dose of narcotics; therefore; a lot of constipation and laxatives. Last summer mentioned to my urogyny I was having some blood in BM. I was aware of external hemorrhoids and experienced some redish blood; but this seemed somewhat different. My gyny informed me I also had internal hemorrhoids and was probably the reason for the blood. I told him I had been aware previously that I had external but didn't realize I had internal as well. We let it go at that.

About a month later, due to possible impacted constipation, went to ER Had much difficulty cleaning me out and was admitted. Eventually was given a few dpses of the prep that is used for cleaning out for colonoscopies. Since I had never had a colonoscopy before (it is suggested anyone starting at age 50 should have one, and then at least every 5 years) I agreed to have the colonscopy. Unfortunately, what might have been a polop that would have been discovered and removed had I been doing colonoscopies Now it had become a cancerous tumor.

Talk with your PCP about this and the possibility of having a colonoscopy. Even my urogyny ignored this warning and brushed it off. Most likely you are experiencing nothing more than some constipation and straining; but not worth assuming this is the case.

Hope you soon get meds under control.
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Old 12-27-2012, 11:31 AM #6
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Neurochic,


Just FYI I had to start taking the Promethezine on xmas eve. As the GERD/RELUX was so bad I started throwing up and the major weakness/tiredness was just as bad. I am staggering the meds best as I can. But its hard because I taking the Lyrica 3x's a day.


I searched and searched for a FULL list of side effects of the Lyrica and found it does indeed cause reflux type issues. AS well as nausea, vomiting, and
a bunch of other issues that are more rare but have been bothering me. I'm still waiting to hear from my doctor...grr...he's out until next week and HAS been the only "prescribing doc".

It's really sad when the only medication they give you ends up messing with you so much..........they have me doing a test kit thing for the blood issue. Its starting to clear up a little. So it is probably an internal Hemorrhoid or something like that. I stopped taking the tramadol to see if that would help some of the drowsiness......eh not much but I do start PT on Friday. I'm a little nervous because the nerve block is wearing off...I'm hoping it won't be too painful.


Sigh....this sucks I either have to choose between unbearable pain, or not quite as painful ans alll these other symptoms.........how fun.
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Old 12-27-2012, 11:59 AM #7
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Yes, welcome to life with CRPS. The choices you get to make are just great!!
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Old 12-27-2012, 12:49 PM #8
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Quote:
Originally Posted by Neurochic View Post
Yes, welcome to life with CRPS. The choices you get to make are just great!!
lololololol

You know I was telling my fiance just as an example lets say something like morphine, or Oxycontin (which I haven't taken yet). The big BAD drugs that soo many people fake for. Funny as I do have SOME diagnostic proof such as the lags in the EMG, the numbness, coldness of 13-15 degrees sometimes more I'm sure. But I digress, lets say those big bad drugs worked! They didn't cause a whole bunch or truly heinous side effects, like those commercials you hear a litany of side effects "including death in rare cases". A doctor would rather prescribe you those than, if taken correctly, something that offers relief with more minimal side effects. Or that IF you DO get prescribed these "big bad" meds you have to sign a frigging contract??? With regular blood testing and monitoring...lolol he was like are you kidding me? I personally got some pretty darn good relief while on Oxycodone (temp while titrating Lyrica) I just felt it needed to be just a little bit stronger and last longer.....not that the doctor paid any attention, to the a month of pain journals I had written about what pain med affected what and activities....Work is getting harder again...typing still not a strong suit.
It be nice to see them go thru what we all do, the EXTREME fatigue, nausea,hair loss, Reflux, vomiting, diarrhea/constipation, and then see how they could handle works AND taking care of their kids!!!! lolol
I would seriously like to give the doctors who treat us the same dosage of meds and see how THEY function. Oh well now how fast do you think they might be asking for something else?? Or how quick they would be in prescribing something that has THAT many side effects!



I found my humor again today as you can tell we'll see how long it lasts! lol
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Old 12-27-2012, 03:54 PM #9
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The block absolutely would have caused throat discomfort but should have worn off after a few days at most. (I think this is one of the signs along with the eye droop that it worked. The doc that did the block didn't know this???) I also remember experiencing acid reflux an hour two after my procedures--usually in the car ride home. Eating something small helped calm my empty stomach, but it had to be soft due to my throat. It usually took me a full week to feel all the effects of the anesthesia clear from my body. Lots of water, massage, and rest are what you need to plan for the week following a block...and not much else. They warn you not to drive for 24 hrs, but I often wasn't safe for 3-4. There are some people that have them weekly for long periods of time, and they must not react so strongly to them.

Blood in your stool can be very serious. You need an urgent doc appointment.
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Old 12-27-2012, 04:01 PM #10
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I guess I didn't state myself clearly! Lol that has been happening a LOT lately....
anywho I a;ready went to my PCP who ordered an occult and lab work up for stool issue. The other symptoms I couldn't find info! Very frustrating. I eventually found a site..can't remember where now, that said that reflux/gerd can be cause by Lyrica. It is RARE when it does but hey that's just par for course right?
It seems all the "Rare" things are happening with me lately!!
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