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 02-22-2012, 06:30 PM #21
kittycapucine1974
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Hi, catra121:

I had my work injury on February 10. I took my oral antibiotics (amoxicilline with acide clavulanique): two 500 mg tablets three times daily for eight days, that is, until February 18. Now, I do not have any antibiotics anymore. In French Polynesia and in France, pharmacies do not sell antibiotic creams. In the U.S., when I had an infection, even one that was not as bad as the present one, I would get a prescription for oral antibiotics to take for at least three months. My U.S. primary care physician is really different from my French primary care physician, here, in French Polynesia.

Guess what happened after I took all my antibiotics and I had none left?! The very severe pain in my RSD knee, with its infected scraped knee wound, came back with a vengeance, a big vengeance. I feel so desperate and angry so often that I want to hit my wound, as if telling it: "You want a good reason to hurt?! I will give you a good reason to hurt!!"

Quote: "How does your employer not have a bathroom for its employees to use (ALL employees)?"

I guess he had a bathroom built only for his male employees because they are the ones that get dirty most often, especially when cleaning and repairing cars and motorcycles. All mechanics in this garage are male. My employer must think female employees, who are mostly receptionists, secretaries, archivists..., do not get very dirty like the mechanics, so these female employees do not, to the employer, need a bathroom. No female employee dares complaining, for fear of losing her job.

Quote: "What do you do if you have to use the restroom?"

Female employees have a restroom, only one restroom, which is almost always occupied, including by male employees. These male employees should use their own restrooms. I guess male employees do not like their restrooms not having doors (the female employees' restroom has a door that can be locked). The female employees' restroom is so small and tight that there is not enough space to move around inside without bumping into anything (toilet seat, water faucet...). Owww! A body part with RSD or the infected scraped knee wound bumping into something, especially something that hard! I can easily imagine the intense pain caused by this, as this type of "accident" already happened to me so many times I lost count. I also lost count of how many times I cried after such "accidents" (because of the intense pain these "accidents" caused.)

Quote: "Is there an office you could use?"

I have an office, which I share with a coworker. The garage's rules do not allow employees to do dressings in their office, especially when there is a coworker that could be bothered or disgusted by my doing a dressing or when another employee (or the employer) could walk into the office to ask me for a car's records. They would most certainly not appreciate my doing my "disgusting" (to them) dressings in their plain sight.

Quote: "Do you drive a car to work?"

I am not legally allowed to drive because I have a seizure disorder. Someone usually drops me off at my workplace or I take the public transportation (bus).

Quote: "Or a store next door or something with a restroom where you could go on your break?"

There are stores next door to the garage, but they would not allow me to use their restroom, even if it happened to be large enough, despite my special circumstances.

My lunch break is from 12 to 12:30 in the afternoon. There are no other breaks. We take our breaks in our office (no dressings allowed to be done here) or in the lunch room (no dressings allowed to be done here either).

Quote: "I definitely think you need to be cleaning it out more regularly that you are or it won't heal."

Even if it is very difficult for me, I am starting to accept the fact that my infected scraped knee wound will never heal. If it kills me one way or another, I made a testament so my American police officer boyfriend will get the custody of my two-year-old baby boy. At least, even if he does not have me anymore, he will live with someone he loves and who loves him dearly.

Quote: "At a minumum... I would change it first thing when you get up, at lunch break, when you get home from work, and before you go to bed. Those might not all be equally spaced exactly...but it will be close. Especially if you cannot leave it open for long stretches of time... the dressing needs to be removed and the wound cleaned multiple times a day."

I get up at 5 AM so I can be ready to leave for work at 5:30 AM. If I wake up at 4 AM or at 4:30 AM, maybe I will have enough time to do this early morning dressing. As for lunch break between 12 and 12:30 in the afternoon, I still have to find a place to be able to do a dressing at my workplace. I will try doing a dressing between my bath time at 5 PM and my dinner time at 7 PM. There is no problem for me doing a dressing before I go to sleep at midnight. When I do not work on Saturdays and Sundays, it is easier for me to find the time and place to do all my dressings.

Quote: "Once the wound scabs over...you would likely still be able to tell if it was infected because it would either leak pus around the edges or you would get a boil or some visual sign of the pus building up under the skin. I think this would be bad...which is why it is all the more important that you clean the wound several times a day."

If I see a scab over my wound without my wound having healed, I will watch out for what you mentioned, so I can go to the Emergency Room if this happens. I just have to hope that the Emergency Room doctors do not kick me out, saying: "This is not a medical emergency. Go to your primary care physician! It is not our problem if he refuses to treat you. It is betwwen you and him!" I am sure there are Emergency Room doctors who would be capable of saying such mean, horrible things, even if I threaten to sue them. Maybe I should buy a cell phone and call the cops if the doctors refuse to treat me at the Emergency Room.

Quote: "Lancing it doesn't HAVE to be done by a doctor but that's what I would suggest (just safer and more sterile). It can be done with a needle, scalpel, or a razor blade. I shudder to even think of it."

The only problem is that if I do not find a doctor in French Polynesia to treat my infection, I certainly will not find one to do the lancing either. I wish there would be labs in the U.S., where I could send some pus for them to analyze and tell me then what kind of infection(s) I have. Of course, I would pay for the necessary material for the lancing and I would pay for the analyses and results. Maybe my nurse neighbor would be willing to do the lancing. Otherwise, if I have to do the lancing myself, people around me at the time of the lancing would hear a bloodcurdling scream.

Soaking my wound in the evening, before I do the dressing before bed, would not be a problem.

Quote: "...leaving it open to the air as much as possible in the evening."

Do you mean I would have to sleep without a dressing? In this case, would the pus not leak on my pajamas and bed and, worse, would the pain not be soo intense if my wound happened to rub against the bed sheets, without a dressing to protect it?

Quote: "Anything that can save you additional pain is a good thing."

You are so very right. If doctors could just think like you, we would be living in a dream world. Unfortunately, we know how doctors think when it comes to pain. "It is just pain." "The pain is not as bad as you say." "The pain is in your mind." Etc... This is a sample of the sentences I already heard from doctors.

Thank you very much for taking the time to answer. I am so afraid to bother and annoy you with my questions and fears. Thank you for your kind words.
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Old 02-22-2012, 08:37 PM #22
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kitty

You should start leaving your wound open at night. a scab will usually form first before the skin. It is a mechanism of defense our body has. You can also tell if after you clean the wound looks beefy or nice a pink. This tells you you are on your way to healing and should stop using the silver.I would recommend that when you go to the dr. you take your own bandage off. I know that my husbands burn started to heal several weeks after treatment with silvadene cream and he had to stop using it for it to dry out.

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Originally Posted by kittycapucine1974 View Post
Hi, alt1268:

Quote: "Is it not time to leave your wound open. This is the only way it is going to scab over."

Do you mean I should not leave my scraped knee wound uncovered, so it is able to grow some skin or scab? By the way, does skin or does scab grow first? Can skin grow without the formation of a scab over the wound?

Quote: "Sometimes silver compounds can turn a wound a yellowish white with a mild odor. (not a dirty diaper odor)"

Then is there a way for me to tell whether it is pus from an infection that is leaking from my wound or whether it is the yellowish white from the Flammazine cream containing silver?

Quote: "Yes you have every right to tell a dr. that he should not touch you because of a disease process such as ours. That is your right as a patient."

This is so, so true. Unfortunately, a patient who says this to his/her doctor, even politely and respectfully, has a big chance of hearing this doctor to tell him/her to get lost and leave the doctor's office. So many doctors today claim to know RSD but, in reality, they do not understand a thing about this syndrome. They just lie to us, patients, for fear of feeling ridiculed in front of us.

Quote: "It is also unneccessary for them to rip your bandage off like you stated earlier."

It is true again. I have the feeling many doctors purposefully want to hurt us, so we are in great pain.

Quote: "Tell them to use water, soak the bandage and the bandage will come off without adhering to the skin."

This is what I do when I change my dressings at home. I have the feeling I am bothering my primary care physician when I ask him to do what you mentioned. It is probably because there are many, many patients waiting to be seen by him in his waiting room. As a result, my primary care physician does not want to "lose his time" with me. After all, the more patients he sees in less time, the more money he earns.

Quote: "I do suggest you follow up with either an infectious disease Dr. or a wound care facility."

I think I told Catra that there are no infectious disease specialists or wound care facilities in French Polynesia. I miss my country, the wonderful United States of America, the best country in the whole wide world.

Thanks so much for giving me the information you did and thanks for your kinds words. I like the Bible verse at the end of your message.
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Old 02-23-2012, 02:25 PM #23
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Kitty...I agree with Alt. At this point you do need to try leaving it open as much as possible. You probably need the protection of the dressing at night when you sleep and during the day at work. But between the time you get home from work and the time you go to sleep you should try to rest and leave it open. Clean it out when you get home, but leave the dressing off. Before bed clean it out again and then put the dressing back on. Does that make sense? I really wish you had a compassionate and competent doctor who could advise you in this as there's only so much we can suggest without actually seeing what is going on. Take care.
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Old 02-24-2012, 05:28 PM #24
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Hi, alt1268:

Quote: "You should start leaving your wound open at night."

I think I could do this between the time I get home from work and the time I go to bed (from Mondays to Fridays). On Saturdays and Sundays, I could leave my scraped knee wound uncovered longer because, since I do not usually go out on these days, there is less chance for dirt and dust to get in my wound at home.

Quote: "A scab will usually form first before the skin. It is a mechanism of defense our body has."

I guess the scab would then be there to protect the wound while skin is growing over the wound.

Quote: "You can also tell if after you clean the wound looks beefy or nice a pink. This tells you you are on your way to healing and should stop using the silver."

After I wash my wound with soap and water and I rinse my wound well and after I disinfect my wound, my wound looks like the way it did on the day of the accident, just after I fell and scraped the skin on a large area of my knee. A few minutes afterwards, a yellow liquid, with the consistency and color of oil, starts leaking all the way down from my scraped knee wound to my foot. Then later on, the pus starts leaking.

Quote: "I would recommend that when you go to the dr. you take your own bandage off."

The last time I went to my primary care physician, he let me remove the bandage. Afterwards, I was getting ready to slowly, very slowly pull off the six gauze pads soaked with pus so as not to rip the wound off and injure it more than it already is. Unfortunately, this doctor was quicker than I was: he grabbed all the gauze pads and ripped them off so suddenly and rapidly that he caused not only my RSD pain to flare up intensely but he also caused my wound to get reinjured. Like I mentioned in my previous message, he was certainly in a hurry to get me out of his office so he could see another patient, then another one, and earn more money as he sees more patients. He could not care less about taking his time with me. He was not concerned with the pain or injuries he would cause me by acting the way he did. He did not even seem to listen to what I was telling him about my wound and the way to remove the dressing so as to avoid injuring and hurting me. He had the attitude: "I am the doctor; you are the patient."

Thanks for all the information you gave me.
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Old 02-24-2012, 05:41 PM #25
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Hi, catra121:

I will do as you and alt said about leaving my scraped knee wound uncovered as much as possible; I will do a dressing for my wound only for sleeping time and for work time.

Quote: "I really wish you had a compassionate and competent doctor who could advise you in this as there's only so much we can suggest without actually seeing what is going on."

So do I.

One last question: When, in the bathroom at home, I wash my wound with soap and water, then rinse it with water, what is a good way to do all this without risking ripping off any new skin that might be growing over my wound and without risking injuring my wound more?

Thanks for all your information.
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Old 02-25-2012, 10:17 AM #26
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Kitty

The best way to clean the wound is exactly what your doing. So often people fail to wash injuries with soap and water. Make sure not to use a bath but just a shower when bathing. It is good to let the water run over the wound because it cleans it out thourghly. As far as a better way of washing truly there isn't.
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Old 02-27-2012, 02:31 PM #27
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Hi, alt1268:

I have been following your advice, Catra's advice, and the advice of her boyfriend for a while now.

On Friday, February 24, the gauze pads of my dressing, including the special Urgotul textile mesh used between the Flammazine cream on my scraped knee wound and the first of the six gauze pads, felt stuck to my wound, even though the Urgotul textile mesh was supposed to prevent this from happening. For more information about Urgotul, which some of you may never have heard of, please click on (or type in the url box if the link does not work) the following:

http://www.urgoexport.com/uploaded_f...URGOTUL_GB.pdf

I pulled my dressing very carefully and slowly away from my wound, which did not get reinjured despite my doing this.

When I looked at my dressing, I noticed something strange: there was no pus on my dressing anymore. Instead, there was some reddish to brownish colored stuff, dried and stuck to the Urgotul textile mesh and to the first gauze pad. First, I thought this stuff was dried blood. A few minutes later, while examining this stuff, my thought was that this stuff looked like dried, very thin scab.

Afterwards, I looked at my scraped knee wound. There was no pus or other liquid on my wound. The red color all around my wound had disappeared and had changed to a very dark pink to purple color. My wound itself was dark pink also, but not as dark colored as the very dark pink to purple color surrounding my wound.

The only problem is that the pain in my wound has not changed much. I guess my RSD is to blame for this.

It seems to me (but maybe I am dreaming) that my scraped knee wound is starting to heal. If this is really the case, I sincerely hope nothing will come in the way and stop this healing.

Now, for my dressing, I only use some Urgotul textile mesh with one 10 centimeters X 10 centimeters gauze pad folded in two. The dressing is kept into place with some surgical tape, which I hope will not cause any electrical discharges to my RSD skin, the skin on which the surgical tape is taped.

Thanks for your information.

P.S. I checked the link by clicking on it after I posted my message; it is working. I forgot to mention the information is in English.
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Old 02-27-2012, 03:04 PM #28
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I am happy to hear that it sounds like it is finally starting to heal. Until it is completely healed it will probably hurt for a good while...and we all know wounds like this can flare up our RSD as well. Take care.
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Old 02-27-2012, 06:57 PM #29
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Hi, catra121:

I wanted to explain myself about the "sad" icon connected to the messages in this thread. I guess you put a "cynical" icon in your last response in this thread because you must have been shocked and surprised about my "sad" icon even though I had mentioned that my scraped knee wound seems to be healing. The two reasons to my "sad" icon are the following:

1) From the day of my work injury on February 10 to today, February 27, I assumed the fall that caused my scraped knee wound had been caused by my slipping on a puddle of water or oil in the garage. What if I was completely wrong?! My left knee has a long history of ligament problems, especially with the Anterior Cruciate Ligament (ACL). To try to correct these problems with my ACL, I did soo many years of physical therapy, I had two ACL thermal shrinkages, I had one ACL reconstruction, and I had one ACL revision reconstruction. Despite all the physical therapy and surgeries, my left knee's ACL keeps having problems again and again and again. Did the physical therapists and orthopedic surgeons do a bad job or is there just no cure for my ACL problems? Result: I have a very poor balance. For example, when I walk, I have the impression I am going to lose my balance and fall any minute. This thought is quite depressing to me. Why can I not walk normally, without losing my balance?! Am I going to spend the rest of my life falling?! My American doctors ruled out the narcotic painkillers I use and my other medications as being the cause of my loss of balance.

2) Even if I wanted to change the "sad" icon, I do not remember how to do it.

Quote: "Until it is completely healed it will probably hurt for a good while...and we all know wounds like this can flare up our RSD as well."

I wonder if my fall could have caused another injury to my left knee, but this time inside my knee, for example to a bone (fracture, bone bruise, etc.), to a ligament (ligament tear or stretch), to a meniscus (meniscus tear), to the articular cartilage, or to any other structure of my knee. Of course, I will never know it because, like I mentioned it in various messages in various threads, my French doctors absolutely refuse to prescribe any X-rays exams, bone scans, or MRI tests for me because they want to save the public health insurance's money. If I was related to a well known person, it would be different; I would get the needed prescription easily. Rich and well-known people are lucky; others, especially the poor ones, can just get lost. This is just so unfair, but there is nothing I can do about it.

Thanks for your information and kind words.
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Old 02-27-2012, 09:13 PM #30
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I am sorry to hear again about all that you have been through.

I have been having serious balance problems for the past year...ever since my RSD spread. I was stuck in a wheelchair for many months as we tried to figure out what was going on with me. Turns out it was just the RSD itself that was causing my balance problems. I still have them...which is the primary reason I still need to use my walker all the time. Physical therapy helped some and I have a lot of strength back now in my legs and arms and stuff...but my balance still is wonky all the time. But with the walker I feel much more stable and haven't fallen in a good long while.

My cynical icon doesn't have anything to do with your post though...just about my general perspective on things with what has happened with my employer. Completely seperate thing and was not meant as anything towards you. I know things seem unfair...they are...but all we can do is try to do the best for ourselves with what we have to work with. I know I don't like the idea of having to walk with a walker for the rest of my life (and I hope that I won't) but even if I do at least I will still be able to get out of the house and do things. A year of being trapped in the house and not able to stand or walk at all for many months of that was a real eye opener for me on how bad things could be and I will do just about anything to make sure that doesn't happen again.
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