Reflex Sympathetic Dystrophy (RSD)

[puppyloverof2]

Great information Reta, thank you. I have been keeping everything I can find on the RSD and am not quite as organized as you are, but after this fiasco with the dentist, I am going to get everything in order and will copy your post, if you don't mind, to show to my PM and see of she can help me in obtaining the records that I need. For instance, earlier in the year, I received an injection into my left wrist but I don't know exactly what is was, other than a diagnostic type injection to see if the pain was localized and it was not I guess because I only got "maybe" 20% relief and for only a few hours. BUT I want to know exactly what was given to me and keep track of x-rays etc based on "Truth Seeker's" input with the x-rays and questioning if it is absolutely necessary, etc. That was also a very informative post. Basically, I want to be like you! All kidding aside, my short term memory is really getting terrible so using your 3 ring binder system, I won't have to worry about remembering or not. Also, I would imagine it would be difficult for a physician to question whether anyone armed with these records and with all the work put into it, is just a "drug seeker".

I am so happy that your pain is stabilized and are doing good. You are an inspiration to all of us that are new to this and just beginning to understand how we have to take control of our own health care if we want to have any quality of life. I believe there can be but not if we can't get the medicine we need. I encourage everyone to join www.rsdsa.org because they are fighting for our right to be able to obtain the pain meds that we must have instead of punishing all of us for others irresponsible actions. It is so important. There are many bills right now that they are trying to get through and will devastate all of us with RSD/CRPS.

Upstate NY is beautiful. Saratoga Springs is where the big racetrack is, if I remember correctly. I really do love living here.

I have received so many helpful responses, every one of them have been much appreciated and I hope I can keep up with responding. I sure want to because they are all very important.

I am so happy to hear your pain is under control. Like I said, I want to be you! I will get there soon. I am really motivated to get myself organized if for no other reason than to make my life easier living with RSD I believe in making everything we can, easier, more convenient, etc. and that means it will take a little work and motivation to get there.

Take good care Reta and thank you again for taking the time to help someone else,
Terri

[Bussey]

Hello Terri,

I am hoping that your mouth pain has decreased substantially lately. Next to RSD pain, mouth pain is the pain that I fear more than anything else! The neuralgia that is associated with dental pain, for example, face, head, neck, and ear pain, are also forces to be reckoned with. Needless to say, last week was no picnic for me! I am sure that the last few weeks have also been very troublesome for you, as well!

It is a sad commentary, that we as sufferers of RSD, have by default, become excellent diagnosticians, because it is so difficult to find a competent and knowledgeable Physician, in the area of treating Reflex Sympathetic Dystrophy Syndrome. With that being said, I think I know what caused the neuralgia in my face and head. Just before the onset of the neuralgia, I was experiencing upper respiratory infection like symptoms. I believe that infection caused the problem in my mouth, as well as the neuralgia in my face and head. Thankfully, my Primary Physician had given me a prescription for antibiotics, at my request, a few weeks ago. To briefly digress, as of last month, my Dr. has agreed to make home visits! So, when he was here last month, I discussed every possible scenario, and he was extremely accommodating! The progression of my RSD, necessitated my needing a Dr. to visit me at my home. That is a different nightmare altogether! OK, I am back on topic now. After taking antibiotics for just a little over a week, as well as extra pain medication and applying lots of heat, today is the best that my face has felt in over a week! So, I guess I diagnosed my problem correctly. At this point, I no longer think the RSD has spread to my face, however, I do believe the RSD exacerbated and prolonged the symptoms. Please let me know how you're feeling.

I believe that your idea about getting a note from our pain management providers, is a very good one. Also, the information provided by Reta, is extremely valuable and on point! Once again, I think it is sad that we as sufferers of RSD, have to go to such extreme measures, in order to be treated with dignity and respect, as well as to prevent ourselves from being hurt any further.

I am glad that your hands are feeling better. However, I would still recommend further investigating how speech recognition devices work. Hopefully, a program is already pre installed on your computer. It only takes a couple of days to become familiar with using the device. A tutorial is provided for two reasons. First of all, it allows you to become aware of the various commands, as well as the ins and outs of the program. Secondly, completing the tutorial allows the computer to recognize your voice, and to become familiar with your speech patterns. I am so spoiled now. Right now, as I am dictating this reply to you, I'm sitting here with my fingers crossed, and twiddling my thumbs, LOL!

I really hope that you feel better real soon!

Take care of yourself, and God bless.

Bussey

[puppyloverof2]

Hi Bussey ~

I started a response to your 2nd response yesterday and I apologize because I was responding to several people at once & I got side-tracked. I did check my computer programs and I do have a speech recognition program for Windows. Yeah!! I will definitely take the tutorial and utilize this feature because I know the reason my hands aren't as bad is because I have been on the computer only to check my email except for yesterday. I was on more because I was hooked to this forum with such valuable information from everyone and so my hands do hurt today, but worth it to me.

It sounds like you have had an extremely painful and frustrating week Bussey. I am so sorry, but am happy you are feeling better today! What does the neuralgia do to your face, other than give you pain? I am not familiar with that, I will look it up. I will say that I have had ear pain in my right ear, dental work was on the right side as well. I did take an antibiotic for 7 days so maybe that kept my ear from becoming a full blown ear infection. I have had hundreds of ear infections during childhood and also some as an adult. I used to say that ear infection was one of the most painful. Now every little thing is excruciating.

I am going to the ER today, I just could not go yesterday, felt horrible so I will get some relief today. I am soooo impressed that your doctor came to your home! That is amazing but tells me that you were in terrible shape which my heart goes out to you for.

Thank you for all of your wonderful suggestions. I am looking forward to checking out the speech recognition program. I will let you know how it goes. I need to get myself together and drag myself to the ER. I printed the pages from the links that Reta gave on Hospital Protocol and the tri-fold pamphlet explaining RSD, as well as the McGill Pain Scale so I am armed and ready! I am expecting good results.

Take care and I will talk to you soon,
Terri

P.S. So glad you are feeling better and I was cracking up when you said you were just sitting back, twiddling your thumbs & dictating your reply to me! I can't wait!

[Bussey]

Hello Terri,

I hope that you will be feeling much better after your visit to the ER! Put very simply, neuralgia is a sharp pain extending along a nerve or group of nerves. Along with the pain, the neuralgia can cause swelling.

I'm so glad that your computer has a speech recognition device pre installed! I definitely want to know how you like it.

Let me know how your visit to the ER goes. Take care.

Bussey

[puppyloverof2]

Hi Bussey,

I put it off another day. My printer is on the fritz so my neighbor printed out the information I wanted to take to the hospital with me, (from Reta) but not until late this afternoon. I had a couple of pain-free hours early this afternoon and I was so tired from not sleeping well for so long, that I went to sleep with my pups this afternoon when my husband went to work (he works 2nd shift so he leaves x 2:30 pm.). I woke up around 4 & took the babies outside for a little while, my mouth started hurting again so I took a 50 mg Nortryptoline (for nerve pain mainly but am told it is also an anti-depressant & that sure can't hurt, lol) and 800 mg. Ibuprofen and ended up going to sleep again. I usually only take the Nort. before bed but I think that dentist damaged some nerves so I tried it and it is working right now. I think the IB. is causing more damage than anything else I am on because I have been feeling bad indigestion type feeling & my stomach is made of "cast iron" but I have taken alot of IB. I can eat anything and nothing bothers meTonight the pain has been pretty bad (I was hoping it was going away when I was feeling pretty good earlier in the day) so I know I cannot put off going any longer, because it is just getting worse. I will let you know how I make out tomorrow when I get home for sure. I certainly do not want to go another weekend with this. Hubby took off Friday & has scheduled days off for this weekend. I soo do not want to be in so much pain again when he is home. I used to lie to him on the phone when he would call from work and ask how I am. This is so bad I cannot lie. He can hear the pain in my voice. He feels so helpless with all of this as I know everyone's family members feel. He just doesn't take it well. I can only read a couple of posts to him before he stops me. He is such a realist by nature, but this just makes him so angry to see me in such pain, and to see (through other people) what the future may hold for me. We will be married 20 years this August. He is a cancer survivor so he does have an idea what I go through. He had testicular cancer when we lived in FL x 31 years old. He had surgery & was the first patient that got the mega doses of chemo he was getting as an out-patient in the Orlando area. He had one of the top Oncologists in the state and he is doing great today. He will be 50 July 2nd!

The neuralgia sounds terrible. Good diagnosis on your part tho! I certainly am glad you had the antibiotics on hand.

May I ask:

How the RSD started in your right arm?
How long ago was your diagnosis?
How long between diagnosis and your not being able to use your right arm?

Where do you live now Bussey? You are so sweet to have checked on me. It sure does help to talk to people that know how you feel. I want to read all the topics. I was reading about "Juliana" earlier tonight (14 yr. old having hard time living with RSD). It just breaks my heart when I read about people so young having RSD. I thought it was cruel to get it at my age (49 until Nov., then the big 50!) but I guess the good thing about being diagnosed young is that maybe they will find a cure for this in her lifetime.

Have a good night's rest and I pray tomorrow will be as good a day as today for you.

Take care,
Terri

[reruho]

Terri,
You must stop lying to your husband and others about your pain. This is something chronic pain sufferers do, down play their pain and it often works against you. You send out mixed messages to people and it confuses them and tends to discredit you. Many people do not understand chronic pain, it is beyond their comprehension. They tend to understand acute pain or illness. You get sick, you take a pill or have surgery, then you get better.

Have you been in contact with your PM? My PM has told me I could come in for a shot of Toradol when the pain is really bad. It is a super NSAID that can only be taken for a short period (5 days). Also, do you have a contract with your PM? Going to the ER could violate your contract and get you kicked out of the clinic. Please call your PM for instructions. Ask your PM to call the ER and give them instructions on what they should do for you.

I posed this question on another forum, do you have a plan for the unexpected? You need to discuss this with your PM. Ask them to put is in writing what you are to do. This protects you and simplfies some of the confusion. I really wish PMs would make this part of their plan of treatment. PM cinics really need to put more into an educational component for us. Too often it is just, "Take this pill and come back in a month." This is an illness like diabetes, but look at the education programs they have for diabetics. We need a program to address managing our condition. We are left to educate ourselves and others about our disease. We should not have to learn trial and error.

There is no reason we should have to suffer like we do. It is cruel and inhumane. We should not have to suffer some of the indignities we have to in order to get people, especially medical personnel, to believe that we are in pain and need help. There are physical and measurable signs of uncontrolled pain. These are elevated BP and pulse, dilated pupils (size) and cold hands and feet (extremeties). I must get off my soap box. I need to go to sleep, I am going on a road trip tomorrow to visit some relatives.

I really hope you get some relief from your pain soon. I breaks my heart to hear of others suffering so much because of others. I will be thinking about you and I will keep your in my prayers.

[Bussey]

Hello Terri,

How are you feeling? Even if you weren't able to see a Dr., I am hoping that your pain level has decreased substantially.

Once we have committed to a Pain Management Dr. or facility, it is assumed that we will receive our pain medication from that Dr. or facility, for the most part, exclusively. However, I believe there are extenuating circumstances, which can sometimes, supersede that assumption. Your current situation is an example of this exception. If, at a given time, going to the ER is your only option, I think it is very important to take all information that you have pertaining to RSD, a list of all medication (especially pain meds), and a telephone number, so that the treating Physician can contact your Pain Management Dr., if necessary.

My RSD symptoms began on September 1, 2003. I had suffered no injury just prior to onset, and I hadn't had any type of surgical procedure performed. I happen to fall into the category of RSD sufferers, who cannot connect the onset of RSD to any particular injury. I simply woke up that Monday morning, in excruciating pain. My hand was swollen about three times its normal size, and it was bent and stiff. The rest as they say, is history. That was a pretty scary time for me, because I had no idea what was wrong with me. During the month of October 2003, I started to lose the function of a couple of fingers at a time. Eventually, I lost the function of all of my fingers on my right hand. Gradually, I began to notice that my right arm was becoming floppy. Shortly before Thanksgiving of 2003, my arm and hand had become paralyzed. I try not to get into a lot of details concerning this part of my RSD experience, because I don't want others to become frightened that this fate also awaits them. You may have read on another post, where I stated that what I experienced, is not the norm. Thankfully, only a small percentage of RSD sufferers, experience such extreme debilitation of affected limbs.

I was born and raised in Philadelphia, Pennsylvania. I have always lived in Philadelphia. Where do you live?

Take care of yourself. You are in my thoughts and prayers.

Paulette

[puppyloverof2]

Hi Reta,

You will be happy to know that while talking to my husband about the pain I am currently in re: my mouth, he told me he gets so upset because he can't help me and he just can't stand to see me in such pain. Well, I came clean and told him that I realize this upsets him and that is why at times, I will down play my pain so he won't get upset because he almost acts mad or like he doesn't want to hear it anymore. But like I said he explained he is not mad, he just feels helpless and he does not do well with that, never has. Actually last visit with PM, I had a pretty good month until this dental thing. I wasn't in pain when I went to see her, for my hands and at the time the IB 800mg was working for my mouth, but it stopped helping a couple days later.

Also I thought long and hard about what you said about going to the ER and I have decided not to go. I don't want to do anything to jeopardize my relationship with my PM. I have been in excruciating pain for 3 weeks, what's another week? I go see her on July 1st and I am getting all of my concerns and questions written down and the priority will be: "What to do when the unexpected happens".

The main reason I don't want to call is because I already called Monday and her asst. said I really need to go to the dentist. My problem is I do not want to go to the dentist w/o already being on some heavy medication because any touch is going to kill me and the fact that I have to FIND a dentist with knowledge of RSD and that may take awhile. I don't even feel like searching right now I am in so much pain. My atty's legal asst. gave me the name/number of a dentist yesterday that she highly recommends so I will give him a call today and see.

Honestly, I am a bit surprised that my PM didn't go over all of this with me and caution me before going to have any dental work done. I don't really care to find out by trial and error. It is far too painful for that. BUT I learned my lesson and I will not let it happen again. Also, since I have just found this forum, I honestly believe I will get more information on any questions that may crop up. Somebody else has probably already gone through it and posted their experience.

Once again, Reta, you have really helped me and I thank you very much.

Take care,
Terri

[reruho]

I didn't mean to get so upset, but these situations make me so mad. I hate to see any of us suffering anymore than we have to.

Sometimes we forget that our PMs and their staff are our employees. You no doubt pay a co-pay and your insurance pays quite a bit for their services. If we are in pain, then we need their expertise to help us. None of us should ever be chided for calling our doctors, especially from the doctor's office staff.

I hope your are feeling better soon. I go to see my PM on the 2nd, my list of things to discuss is getting longer.
Reta

[puppyloverof2]

Don't worry Reta, I didn't take it personally. I certainly know how frustrating this can be. It is heart-breaking reading these posts, wanting to help, but can only do so much. All we can do, is to educate our selves & our doctors on some possibly unnecessary procedures, to advise patients in the initial consultations to be very cautious when having any medical procedure done and to check with their PM first as it can lead to months of recovering for even the littlest thing. So hopefully our misery, used as a learning tool, will keep someone else who has RSD from suffering in addition to the daily struggles we already endure.

Most importantly, I do not want to damage my relationship with my PM. I am very new to this as far as dealing with pain spreading to another place such as my mouth. I so appreciate you mentioning that really.

Yes, I will be armed with my questions as well, this time, thank to you and I will make my health notebook this week.

Have a good night,
Terri