Reflex Sympathetic Dystrophy (RSD)

[puppyloverof2]

Hi ~ I also have RSD. The RSD developed post left-hand Carpel Tunnel Release surgery May 21, 2008. Let me also say that I have been diagnosed with Raynaud's Syndrome prior to the diagnosis of severe carpel tunnel syndrome in both right & left hand. Two months post-op, I was still in agonizing pain with the burning, shooting and stabbing pains that were indescribable. My surgeon referred me to a pain clinic with an rx for Lyrica & another for a Sympathetic Cervical Block and told me that he suspects I have RSD Well, the pain clinic he referred me to told me they couldn't help me when I called them 4 weeks later to find out when my appt. was (my file sat on their desk until I called, didn't bother to call me so I lost over 1 month in precious time). That office referred me to another pain clinic and they also said they couldn't help me. I finally found my own pain management clinic that was covered under my husbands insurance but it was a 2 hour drive away. I got an appt. for Sept. 5th. Unfortunately, all the time wasted turned out to be more damaging than I thought. It is imperative that a new diagnosis of RSD be treated immediately with the Sympathetic Cervical Block (most effective if done in first 1-3 months after diagnosis) so I wasn't able to have that. However, my pain specialist (a FNP & better than any doctor or surgeon I have seen) prescribed Nortriptyline HCL 25mg with instructions to increase the dosage by 25mg every 7 days until the stabbing, shooting, burning pain weakens or is gone, up to 150 mg. per night. I have stabilized x 100 mg. per night. I am still in constant pain, but it is not the shooting, burning, stabbing pain and that pain relief is a GOD send. I take 60 mg of Oxycontin every 12 hours and 10mg Percoset every 6 hours. I am still pretty miserable but I can honestly say if I still had the burning to contend with, I don't know if I would be here typing this to you right now. PLEASE ask your doctor to prescribe NORTRIPTYLINE. I hope this helps and I do hope you get some relief soon. Over 1 year later and I have been denied SSD (even tho I meet all of the qualifications) so I got an attorney and he told me it was a win-win case so I didn't worry too much at the time of the video hearing. I live in NY and the video hearing was set up with a NJ judge???? Apparently this judge sought the expertise of a vocational expert and now my attorney would like to cross-examine this expert. I am on a 5 lb. restriction for life for RSD in my left wrist and then my right hand was supposed to have surgery last June 2008. I have seen another surgeon this year and I was told that he wouldn't touch me surgically and just to keep treating the RSD, leave the right hand that has Severe Carpel Tunnel Syndrome in it. Suffering from numbness, pins & needles, PAIN in rt. hand and rt. arm, extreme weakness, drop things all of the time. It is much like the RSD in my left hand only I write with my right hand and can't hardly do that. It kills me to flip through magazines, or hold the phone to my ear, or type on the computer. I am not on the computer near as much anymore even tho it is about all I have to do out here in the country, that I can do anyway. Anyway, I read so many stories from people suffering so much from the burning pain, and just wanted to let you know what took away the burning pain for me, hoping it may in turn work for you also.

My current problem began about 3 weeks ago with a toothache over the weekend, got into the dentist on Monday, took x-rays and gave me (20) Percoset 7.5 and inst. to come back on Wed to get a cavity filled, lower right side. Ok, no biggy I thought. From the time he injected my gums (I could feel this all the way to my eye) and through the next hour I sat in his chair (the chair from hell), tears were literally streaming down my face. I had a 3 surface cavity to fill which they didn't even bother to tell me it was a very deep cavity and the dentist that did the work was so rough it felt like a battle was going on in my mouth. He had heavy equipment hanging from my mouth and as I said was very ROUGH. I was in so much pain the next morning, actually by 9:00 pm that night (appt was x 4:00 pm) I called & asked them why I was in this kind of pain. The office mgr. said I may need a root canal which about put me thru the roof with the mere thought of someone poking around my mouth again. The owner of the practice said for me to come in x noon so my husband drove me because he was sooo mad that he treated me so rough and he let him know it. Anyway, long story short, they took more x-rays that day and said I do NOT need a root canal after all (RELIEVED) but I am still in more pain now, 3 weeks later than I was before getting the filling. I may even have to go to the ER tonight because all of the meds I mentioned I take already hasn't touched the pain, even the Ibuprofen 800 mg that worked somewhat for me less than 1 week after the dental work, doesn't work anymore. I am wondering if my RSD is causing this pain to drag on for so long. I am NOT going back to that dentist and I will transfer my records but I am scared to have anything else done because it still hurts soooo bad. Does anyone know if you have RSD in left wrist, if that can prolong pain in mouth or other parts of the body, longer healing time as well?
I will be grateful for any comments. The mouth pain is worse than my hand pain right now, by far and is driving me crazy. All I can do is sleep, then when I wake I am in more pain and I cannot take enough medicine to dull the pain it seems. *Carpel Tunnel note - My surgeon told me my hands would be 100 % after CTR surgery, no mention of ANY risks of this RSD I had never heard of and now have. I am very thankful that I changed the hand the hand that was to be operated on the day of the surgery (supposed to be my right & just had a feeling that told me what if something happens & then I can't use my dominant hand so I changed to my left at the last minute. They weren't happy but who cares?

I have read some amazing testimonials from people with unimaginable inner strength and faith. I was up until 6:00 am reading so many of your stories and feel that I am weak to even complain because there is always someone worse of than ourselves. This is such a cruel disease. Good Luck and I will keep you all in my prayers. I am thankful for this forum as well. God Bless you all, Terri

[reruho]

I have not had any dental work done but I can tell you when my pain is high my teeth hurt. No, my whole moth aches and it hurt to brush them. I use the softest toothbrush and gargle a lot. It a while but the pain went away for me

I recommend you finding a dentist that has some experience with RSD. You might have to start calling every dentist in your area. Talk to your PM, they may know a dentist that has experience with RSD.

[puppyloverof2]

Thank you for your fast reply. I try and educate myself as much as I can (without getting too depressed) and I see from so many others posts that it can spread. Since this tooth pain has hung on for so long, I am starting to wonder if this is something I will need to discuss with any doctor before having anything done regarding any part of my body. Basically what I am trying to ask is this: Can the RSD/CRPS prolong any pain and healing in any part of our bodies, causing more pain than in the original affected area? From what I understand, the only surgery I (or any of us) should have after being diagnosed with RSD/CRPS is life-threatening only. I am glad your pain is under control finally. Thanks for the suggestions, I really appreciate them. I will give my PM a call on Monday to search for an informed dentist. Now I am scared to have even a root canal. In NY, the dentists/doctors are so scared to give out any narcotics, I am just afraid I won't be able to get the pain under control since the heavy ones I am already on, do not touch the pain. Going to get a good mouthwash too because it has hurt to brush my teeth as well, which is probably why I have such a bad cavity in the first place. That and the cookies and cakes that my depression craves when I can manage to bake. Sometimes that is the only thing that gives me any pleasure so I figured, why not? Well, now I know why not! Damn mouth pain is unbearable. Not fair! Well thanks again and good luck to you.

[reruho]

Yes, you must be very careful of everything.

[Truth Seeker]

A true story,

I had fractured my calcaneus severely in 1996 and during my stay in the hospital emerg. many x-rays had been taken, after hours in the emerg. I was send home to wait until I was called back for surgery (which I believe to have been a serious mistake)
After two agonizing days I was called back, but only to have more x-rays.
During the drive to the hospital I felt this unusual fear of x-rays all of a sudden, which puzzled me.
While the x-rays were taken, my pain went through the roof, tears were streaming down my face.
After surgery, I had more x-rays and than more and more, I had more x-rays in one year than I have had in my entire adult life.
I could not figure out why I felt worse after each set of x-rays, but eventually I would learn, that we should question the necessity of each x-ray.
To the best of my knowledge, there needs to be a time span between x-rays.
When I became aware of this, I avoided x-rays when ever possible.
What had started with a fracture and surgery on my right foot, month later was diagnosed with RSD.
This disease spread so quickly, that it eventually effected my entire system, literally from the tips of my toes into the top of my brain, internal pressure became unbearable, not to mention all that RSD represents.
In other words, RSD is not localised based upon region of injury.
In 1998 a perfectly good crown literally split in my mouth and it had been suggested that I go for the Cadillac of dental implant at a cost of approx, $ 1000,00.
My RSD disease had made me very suspicious and I no longer listened to anyone unless I did research of my own, but I could not find the information I was looking for, therefore I trusted my instinct, which went against the implant, the procedure I chose ended up costing me five times as much, literally, but it was not about the money.
During my procedure, I sat in a dentist chair for five hours, I honestly thought that I would lose my mind, because my RSD was relentless, especially in a dentist chair position.
After the first few hours, the dentist (whom I like and respect) announced that an x-ray would be necessary and instantly my unusual fear was back?
No more than five minutes after the x-ray, I had a personality change, I can be sarcastic by nature, but I went way over the line as I snapped the x-ray techs head off, I was stunt by my own reaction, my tongue and words had been razor sharp.
The next day I apologized to that poor girl, I truly felt very badly.

My mind is as such that it requires answers and now I needed to know why I had reacted like this?
Through my RSD I had learned, that light had impact on me, natural as well as artificial, but I also knew, that my reaction to electricity and metals had changed drastically, putting all of these into the right context and radiation comes to mind.

We are always told, that low levels of radiation are not harmful, but I seriously question how long radiation lingers in a human system after to many x-rays.

This incident encouraged me to research radiation.

[Bussey]

Hello puppyloverof2,

The information that you shared in your post was very informative, and for me, terrifying. For many many years, every since I can even remember, I have always feared going to the dentist. Thankfully, for the most part, my experiences thus far, have been tolerable. Only one visit comes to mind right now, that I'd like to forget forever! Recently, I have been dealing with pain in my mouth, along with neuralgia in my face, head, and ear. Quite naturally, adding RSD to the equation, along with my pre-existing fear of seeing the dentist, has exacerbated this fear tremendously! Also, I've been wondering whether or not the RSD has spread, once again, to my face. Hopefully, that is not the case! Up until now, I have been using medication to help to deal with this issue. I feel much better than I did several days ago!

My main reason for responding to your post, was to ask if you had ever thought about using a speech recognition device when using your computer. Because I have RSD in my right hand and arm, I am no longer able to use that limb. When I use my computer now, most of the time, I use a speech recognition device. This allows me to dictate manuscripts, emails, etc. I am also able to use various commands, in order to navigate around the computer, from website to website, application to application, etc. Initially, a friend of mine told me about a program called Dragon Naturally Speaking. It is a speech recognition program, that allows you to use your computer, for the most part, hands free. However, shortly after purchasing my computer a few months ago, I realized that my computer had a pre installed speech recognition device. So, if your computer is fairly new, you may already have this device installed on your PC. This program has helped me tremendously. Actually, it was the determining factor in whether or not I would have a computer, because I had a terrible fear of damaging my left hand by overtaxing it with too much typing. If you are interested, and have any questions, just ask. Also, you can use the Internet to find out more about the Dragon Naturally Speaking software program.

Take care, and God bless!

Bussey

[puppyloverof2]

Thank you so much Bussey! I am sorry to hear about the problems you are dealing with now and the uncertainty of whether the RSD has spread. You are not alone. I am also wondering the same thing. Mainly just because the pain in my mouth is sooo intense and so far none of my meds are touching the pain. So I spoke to my pain manager yesterday just because I didn't know where to turn first. Well, as expected she advised me to see a dentist (which I knew was going to be the answer), basically I was just trying to find out whether I need to just go to the ER (I know I can get some relief there because that is where I went last summer while recovering from the CTR surgery and in agony due to running out of pain meds & my surgeon being on vacation & nobody in the office wanted to give me meds but eventually did, after I had to go sit in the ER for 6 hours in tears, then when my surgeon returned to work, he then suspected that I had RSD in mid-July), or to drive 2 hours to see her, which I was willing to do. I will now just wait to see her on my reg. scheduled monthly appt which is in a week to discuss how to prepare for dealing with doctors in other area's to advise them of my RDS/CRPS before ever touching me because I don't think we should have to suffer unnecessarily in addition to the daily suffering we all are enduring anyway. It gets old defending the pain and being taken seriously and given the proper medication that only we know will take away the pain for a period of time over 1 hour. I have been up since 6:00 am because I woke up in major pain with my mouth throbbing again. It hurts too much to be able to go back to bed until the meds kick in and then I'm up for the day basically, didn't get to sleep until 2:30 am because of the pain so on top of it all, I am sleep deprived as I suspect most all of us are that have this disease anyway & that doesn't help either. IF we can get the proper pain meds then we can at least sleep away some of the pain we endure. It ends up where I (probably most of us) only get "maybe" 3-5 hours of sleep a night and I am one who can rarely nap during the day even tho I would like to, something keeps me from being able to. Back to what I am trying to do that will also help you possibly with your fear of dentists (I am right there along with you on that, especially now that I know, whatever pain and wherever it is in my body, the pain is going to be 10 x's worse than it should be. That is what I have experienced recently, with not only the dental work, but spider bites, any bites seem to be much worse than I have ever had before. I mean nasty looking sores, that finally went away about 18 days later. They looked so bad my husband tried very hard to get me to go to the hospital but instead I just did some research online about spider bites and basically diagnose myself as not having been bitten by a brown recluse or any other poisonous spider for the area we live in Upstate NY. It didn't dawn on me that it was probably the RSD that made each bite so incredibly painful. BUT, back to my point again, lol, if we can get our pain management teams to help us avoid this hurdle of needing much higher doses of pain meds when either we hurt ourselves by accident or we get sick from something else or need dental work, bu giving us some type of letter that we can give to each specialist that we must see, explaining what our condition is and what may occur regarding the level of pain we are in and to please prescribe pain meds that our much higher for the expected recovery time yet explaining that our recovery time is much longer than the average bear, and we are already on heavy pain meds but anytime something happens it exacerbates the RSD, so we need special attention since most physicians are not familiar with RSD/CRPS or may not have ever had a patient with RSD/CRPS and hopefully they will take this letter into account while treating those of us with RSD/CRPS. Make sense to you? It makes sense to me. Like some people wear some type of identification that says they have "Diabetes, or Heart disease, or whatever, it would be great if we had something equivalent so we do not have to go through more pian than we already do, since that is the initial problem is the pain signals to our brains makes the slightest pain for most people, excruciating for us.

So today I am arming myself with my book on RSD/CRPS and taking all of my legal papers from the disability fight which has all the medical records copied, and I am picking up my dental records from that dentist office and going to the ER, with also a copy of the McGill Pain Scale that shows that of all Chronic pain, RSD is 42 on the scale of 50 which is more painful than having digits and limbs amputated, so that I can at least get the level of pain medication I need to get some relief for more than 1 or 2 hours and then I must start the search for a dentist/oral surgeon (anybody in the field) with knowledge of RSD/CRPS that may be a bit more helpful and sympathetic. I am not letting ANYBODY touch my mouth until I am not in any pain prior to exam. Not after this. 3 weeks of intolerable pain (dental pain, no less) is enough to drive a person crazy.

Also I am very interested in your testimonial regarding speech recognition. I can honestly say that my hands have not been hurting as much the last 3 weeks, I believe because my mouth has been hurting so bad, making me feel like doing NOTHING, so I haven't really been on the computer much at all. I count on the computer as my lively-hood since there are so many other things I cannot do and I cannot work, so when not on the computer I am basically a couch potato. If it weren't my 2 little "Peagles" (Pekinese-Beagle) I would be in bed all of the time in a deep, deep depression. They are sweetest little guys and attribute so much to my daily happiness, I don't know what I would do without them. I got them 3 weeks before my surgery last May 2008 so I would have some company while recovering. My niece came up from FL to help me while recovering so she had a ball taking care of the pups. I now know I couldn't have done it without her & my husband because I never got any relief pain-wise once the anesthetic for the surgery wore off. Now I know why!

Anyway, I'm sorry to have rambled on & on. Please write back when you feel like it & tell me about your face and the new problems you are experiencing. Also I have a Dell VOSTRO 1000 laptop with Windows Vista OS and it is just a little over 1 year old so when I get back from everything today (will be a long day no doubt) I will check and see if that is installed, but any info you have that you think will help me, will be most appreciated.

Thank you so much for your reply. Have the best day you can today. I hope to talk again with you soon.
Sincerely,
Terri

[reruho]

Terri,
I carry information with me for people to read from RSD Syndrome Association with me in my purse. One is a trifold describing RSD/CRPS to people and the other is a Hospital Protocol sheet. I also wear a medical alert necklace with this information: "My name and husband's phone number, RSD/CRPS, NO IV, NO BP, NO NEEDLES LEFT ARM." On the back it says:" CHRONIC PAIN DISORDER. PHYSICAL TOUCH CAN CAUSE PAIN. HANDLE WITH CARE." I asked my Primary about getting the bracelet and he didn't think it was important since this was not life threating condition. I asked the PM and he was in favor of it. I ordered it from a company in Indiana and it cost about $21 and I got it in a week. I ordered a necklace because I can't wear a bracelet

Hospital Protocol RSD/CRPS Patient: Handle with Care
http://www.rsds.org/4/resources/pdf/hospital_protocol.pdf

This is a trifold called Recognizing, Understanding , and Treating CRPS/RSD
http://www.rsds.org/1/publications/pdf/Recognizing_Understanding_08.pdf

I guess I am at an advantage. I get treatment at a hospital where the medical records are kept electronicly. The RSD is documented in my records. I have had to go to the ER once and I was able to get some meds until I could get into my PM clinic. I had called the PM clinic earlier during the day for instructions and the nurse did not call me back until I called to say I was going to the ER. This nurse yelled at me. I complained about it my next appointment and she isn't suppose to call me anymore.

I have taken information to my dentist and even discussed it with him. He has never treated anyone with RSD. I think as long as he just does cleanings I will be fine. I will probably have to find another dentist if there is any dental work done. I imagine that is going to cost me a pretty penny for that speciality care. It isn't fair.

Reta

[puppyloverof2]

Hi Reta,

Oh my goodness, what a wealth of information you are. Thank you so much for responding to my post. I am more thankful everyday than the day before that I found this forum. Your response has confirmed what I believed I should do, but hadn't been told to by my PM. I count on her for guidance as she also suffers from Chronic Back Pain, but there is no better guidance than the guidance from people who are going through this themselves, like on this forum. My PM is wonderful but I hadn't really had any other issues besides my hands crop up until recently so I am sure when I see her next week, she will agree with getting the bracelet or necklace. Yes, how lucky you are to get treatment at the hospital where the records are kept. Actually all of my records are within the hospital that my PM is associated with, but kept at a different location which is still 1 & 1/2 hours from where I live. My primary, dentist, gyn, heart doctors are all in different groups only 20 minutes away. But I am trying to get all of my doctors under the same roof or at least group name. I get so tired of going to PT and doctors, I have just put off trying to find the other specialists and have to go in for initial exam and so forth. Lazy, I know, but like i said where I want to be taken care of is nearly 2 hours drive for me and driving hurts my hands so I try to keep it to a minimum. It will be less headache if I just go ahead and do it. I was laid up all summer last year so I was really hoping to enjoy this summer, however, until I get the right chemical cocktail, so to speak, I just have to keep plugging along. My PM did say last month that when I get stabilized with my meds, I can go to every 3 months and that will be wonderful, especially in the winter months, as we live out in the country in Upstate NY and it gets pretty hairy on these mountain roads.
Thank you again for taking the time to respond, Reta. My best to you and hope the best for your health.
Take care,
Terri

[reruho]

I have a friend with a very complicated case of Crohns. She has a Primary, a GI, an Endocrinolgist, a Psychiatrist, a dietican and a GYN that she sees. She has gotten them all in one group so that they can all access her records, which are kept electronically. She also takes her lab sheet from doctor to doctor so they can all put what they want on the sheet and she gets it all done at once, instead of each one ordering seperate tests.

I maintain a health notebook which I take to all my appointments. It is a very simple 3 ring notebook with plastic page inserts, very low tech. I am really very anal about this. I have it divided into sections to make it easier for me to find any piece of information I need to find. I have my doctors give me copies of my labs and procedures. I transfer the labs to a spreadsheet. I do not know how you can see trends/patterns if you have to flip back and forth from page to page. My primary loved my spreadsheet. I have developed spreadsheets to keep track of my medications that list all the important information like: reason for medication, start/stop dates, and any side effects or any other comments. I also keep a written summary of each doctor's appointments. I also keep the insurance referrals sheets, the medication information sheets. I also type my questions up for my doctors and record the answers and keep them in my book. It is very useful because I can share all this information with my doctors. If your doctors are reluctant about giving your copies, tell them you need to give it to your other doctors to them in the loop.

I have gotten to a stable point and only see my PM every 4 months or sooner if I need him. I hope you can get to that point soon, it is very nice.

Reta

P.S. I used to live in Saratoga Springs when I was in the Navy. Saratoga Springs was a wonderful little berg.