Reflex Sympathetic Dystrophy (RSD)

[reruho]

Terri,
I have found that the doctors treat me differently when I come armed with written questions, a notebook and note pad. I feel I get taking a little more seriously when I ask questions and raise concerns. I document things too and keep notes. I even used my camera in my phone to take pictures of a rash that appeared on my arm. My doctor hadn't thought of doing that. He did see the rash I was telling him about. And we also had a good laugh from it.
Reta

[puppyloverof2]

Hi Paulette,

I am so sorry that this "just happened" to you with no prior injury. I can only imagine how you felt and I'm sure getting a diagnosis was quite a hurdle. I only know how I felt after the surgery on my hand, when nurse's and dr.'s would ask when my surgery was and it was more then the typical 6 week recovery, that LOOK they give you and try to give you lesser pain medicine, which put me in MORE excruciating pain as well as depression because all I knew was that it hurt like hell and I didn't know why and I had to fight to get any relief and that made me so mad.

I am not in any less pain today as I was the day before. I did have a better day but in the evening it comes back and I cannot get it to go away so I just have to stay up until I fall asleep and the pain wakes me up again (like now it is 5:26 am) pain woke me up at 5 am, fell asleep about 2 am.

My husband & I live in Whitney Point, NY. We bought 1 1/2 acres out in the country last year. It turned out to be the place we were looking for with a gorgeous view, big yard (for the puppies I hadn't found yet x the time, lol) and a small enough mobile home that I could take care of it (because my hands had been killing me for nearly 3 years and didn't know why at the time, no surgery yet, was just severe CTS) so we took on renovating this 2 bed/2 ba mobile home. We were so excited, had lots of vision about what we wanted. I moved in last Feb. and started work on the house, husband got the other house ready to sell. Removed all the strips from the wall board panels (I hate those), applied joint compound to them all and started sanding after 3 coats of joint compound, more sanding. We gutted the place and then in March 2008, the CTS literally stopped me in my tracks. I couldn't do anything. Scheduled surgery for May 21st and have been down ever since. My husband also got hurt x work, 3 days before my surgery and was home until August! Needless to say we still have joint compound on the walls and my master bath is still gutted, we had also gutted the kitchen and left nothing but the kitchen sink (no pun intended, lol, it is true) and the base cabinet it is in. Soooooooooo I have learned to be patient. We did lay a 48' walkway and poured a concrete slab for a patio last year. Also bought a 12 x 16 new shed so with all of that, we put a pretty penny out. We had planned on doing all the work ourselves, but that is not going to happen. My husband works all the time, takes care of me and the pups, takes care of the house and chores so no time left over to do the work himself. We don't have them money right now to hire a crew. One room at a time, it will get done.

The good part is we do LOVE where we are, so peaceful, no sounds of cars and the base turned up so loud it wakes you up, no street lights even!. It is our little piece of heaven and I am very thankful to have it.

How is your face today? Has the neuralgia settled down?

Thank you for writing to me Paulette.

Have a good day,
Terri

[puppyloverof2]

Tried and true! Unfortunately I have been dealing with doctors for a long time with my mother, mother-in-law, and my dad was diagnosed 2 yrs ago this coming August with Stage 4 Pancreatic Cancer. Of course I ran to his side immediately (drove by myself from NY to OK) and stayed nearly 3 months. Back to the topic, I have a lot of experience dealing with doctors and did learn they pay attention when a person takes control of their own care. I believe the more you know, the better care you (or loved one) will receive. It works, have seen it happen. I am just so tired, any little thing I have to do overwhelms me just thinking about it. I think the pain is just about to take it's toll on me. I am exhausted. I cannot wait until Wed. when I go to PM. I am going to be prepared for that appt!
Thanks again,
Terri

[reruho]

Terri,
Where were you in Oklahoma? I was in Norman last month visiting a great uncle. My mother was born in Tishamingo, in the southeast corner.

Has your doctor tried any antidepressants? They can help you get some rest and really help with pain because you can get some rest? I took Elavil to help me sleep and it helped with the pain because I was getting some high quality sleep. The sleep was wonderful, but I stopped because of the side effects.

I am finding that I constantly must do research to say on top of this disorder. I get so little information from my doctors. Sometimes I feel like they think they can tell you what is work and then expect you to do the research to educate yourself. It is so sad that they spend so little time explaining anything to you.

Good luck on Wednesday, I have an appointment the next day. Do you have to travel far go to the PM clinic? I live in a large city, but it is still a 30 minute drive across town. Sometimes, the traqffic gets to me.

Reta

[puppyloverof2]

Hi Reta ~ I agree 100% with you that the doctors do expect patients to do research. That is not a problem for me because I am a person who has to know as much about the subject (most subjects) as I can learn and understand. However, there are a lot of people out there that a) Do not have a computer. b) Don't have any research skills. c) Expect the doctor to tell them everything and what to do and they do what the doctor said, right or wrong, nothing more or less. The doctor's either need to assume that the patient does not have access to or the training to use a computer and inform them on their condition, tell them where to go to get the knowledge, etc.

My Psychiatrist told me last time I was in to see him and I was complaining of being depressed and not sleeping, asked him directly for an anti-depressant and he said the Nortyptiline that my PM prescribed is an anti-depressant. Also I take Buspar and Ativan for anxiety, along with Oxycontin and Percoset.
The Psych's response was I am on too much medication already!! Obviously he is one of the doc's I need to give all the information to re: understanding RSD, Hospital Protocol,& McGill Pain Index chart.

I plan to talk to my PM on Wed. about my meds. and what to do when the unexpected arrives?
Also I have a 2 hour drive to see her. She always keeps me in the office for nearly 2 hours. Very attentive and let's me talk about my RSD. I just love her.

My dad lives in Edmond, OK and so does my sister & her family (they just moved from FL last Nov). My husband & I lived in FL for 16 years before moving back to his hometown (Binghamton, NY) and we took care of his parents until his mother passed June 2007 from Colon Cancer. His dad had to go into a nursing home because when Mom got sick, he went into full Alzheimer symptoms and was out of control. It was so sad. He didn't even get to say good-bye to his wife of 53 years. That's another story.

I was born in Arlington, TX, raised in Tulsa, got married too early and moved out of state (TX) then divorced and back to Tulsa where I met my current (and last) husband through mutual friends and we moved to Orlando, FL 6 months after we met and got married a few days after we arrived in FL on the way to the beach, I was wearing a bikini, lol! So now 20 years later, going strong....
I have heard of Tishamingo. Small world we live in huh? and "now you have.....the rest of the story!" Paul Harvey lived in Tulsa, OK. He just died not too long ago.

I have a lot to prepare for starting tomorrow (my hubby has been home for 3 days so I try not to use computer too much). Good luck to you also on your appt. I may have to get in touch with you if I run across any questions while preparing my book, if you don't mind.

Thanks a million. Have a great night, Terri

[Bussey]

Hello Terri,

I'm sorry that it has taken me so long to respond to your post. I am recovering from a full flare. Last Sunday, I woke up in pain. By the end of that day, my RSD symptoms were completely out of control! To put it mildly, this has been a very difficult week for me. The neuralgia symptoms cleared up quite a while ago, thank God!

I am hoping by now, that you have seen your pain management Dr., and your pain level has gone down. Did you visit a dentist?

Your description of where you live sounds beautiful! It sounds like you and your spouse, have definitely found your slice of the American dream! I'm very happy for you, and I wish you continued success in restoring your home.

I've browsed through some of the other posts on this topic. As it pertains to the doctors wanting you to do your own research, and appreciating it, I have experienced mixed reactions. One of my pain management doctors went as far as to tell me, to stop reading so much! He said that, because he wanted to prescribe a particular medication for me, and I questioned using the medication, after reading up on the side effects. I was not offended or upset by his remark, because our relationship was a fairly good one. Also, he would invite my input, when it came to determining how he would treat me, overall. I appreciated that. Eventually, I agreed to try the medication, and I am still using it to treat my RSD symptoms. On the other hand, I was seen by a pain management Dr. who explicitly stated that I would be doing things his way, period. At least, that was definitely the gist of it. That was my first and last visit with that Dr. With that said, it is my opinion that some doctors have much bigger egos than others, as some find it offensive to even question or comment on how they determine you are to be treated. Then on the other hand, other doctors invite your input, as it was stated in some of the posts, and they appreciate you being an informed patient.

I sincerely hope that you are feeling much better now. Take care of yourself.

Bussey

[reruho]

Terri,
How did your appointment go?

My appointment went very well, although I forget to write down two things and so I forgot to ask him. I was able to send them the questions via email, I did get to talk to them about not getting a return phone call about a question on some medication he gave me. Both my doctor and the PA I see apologized about me not getting a response after 4 telephone calls trying to connect with a nurse.

Reta

[Bussey]

Hello reruho,

I hope your pain levels have been tolerable. I have one question. Where are you affected by RSD? I'm sorry if the question is redundant.

I am also one that writes just about everything down. I keep a record of medication intake, flares, the severity of the flares, the length of the flares, the symptoms experienced during the flares, etc.

Take care.

Bussey

[reruho]

I was in a car accident (hot head-on by an uninsured motorist) and had very minor injuries-chipped ulnar, undisplaced distal radius fracture and compression fractures in my hand. My left wrist was to be in a cast for 4 weeks, 2 weeks into it the symptoms started. I remember saying I can do this for 2 more weeks while thinking about what I use in the garage to take it off.

It started with burning and swelling. I called the Orthopedic clinic, they said take benedryl (skin irritation) and to elevate my wrist for the swelling. It felt like the inside of my cast was made with the roughest burlap. I knew I would have this huge hole in my arm when the cast came off, but it looked normal.

I was sent to OT after the cast came off, I attribute much of my success to immediate OT. I know she saw the symptoms, her notes, and because she told me my injuries were worse that she originally thought. I kept complaining about this and they keep making notes like "RSD like symptoms" in my records. I don't think anyone was reading these notes.

I went to a surgeon to discuss a breast injury from my car accident and he gave me an answer (at 10 weeks). (He had personal experience with RSD, his son from a football injuty.) I got a an answer when I asked my doctor directly. "Is this RSD?" I also was dumped and shipped off to Pain Management by the Orthopedic surgeon.

I was extremely lucky to have a primary that I was able to go to for pain medication because no one else was asking about it. And, then I didn't know all these crazy symptoms were related: the pain, the burning, the freezing, the sensitivity. That is the reader digest version.

Reta

[puppyloverof2]

Hi Reta,

My appointment was a difficult one. When I called last Monday to find out what I should do about my mouth pain and talked to my NP asst. and she relayed to me to "go to the dentist" which as you know, I did not want to do until I got some relief. So when I was there I told them I did not go to the ER because I didn't want to damage our relationship by breaking the contract and the NP asst. looked me straight in the eye and said "I told you to go to the ER"! I took all my medicine with me and she said "we aren't doing rx's today because it is 1 week early" (due to NP going on vacation on 7-3). Well I was very surprised because I had doubled up on my meds trying to get some relief, since she told me to "go to the dentist", and I needed refills. I had told her on the phone I wanted to go to the ER to get a shot and stronger pain meds than what I have and her response to that was, "They will just give you a shot of Toradol and that will wear off in 5-6 hours" and then she went to find out what my PM wanted me to do and came back with "She said since this is a dental problem, you need to go to the dentist" and that was that. Well in the office she said with a matter of fact attitude, "I did not tell you they would give you a shot of Toradol, I wouldn't know that so I know I didn't say it". I was stunned because I had never even heard of Toradol before she said it and by not going to the ER, it prolonged my agony and that is what I wanted to do in the first place. So, she & I were at an impasse and I knew I couldn't stand my ground and win so I said," Well, I am not making this up since it was at me expense as far as my pain, but maybe I was in too much pain to hear you tell me to go to the ER". So my PM was upset at me because she said "if you were worried about damaging our relationship, taking more of my meds is just as damaging". So it was a lose-lose situation and we chalked it up to a mis-communication, even tho I knew better, and it is clear to me now that when the unexpected comes up, I am to go to the ER! I was really pissed off tho. I did get my refills though. I was the only one who did get them that day, so I was very fortunate. Oh and also she said she did not think my mouth pain was related to my RSD and i have been doing further research since I got back from seeing her and I know it absolutely is related in some sense. I don't know if you have ever been to www.rsdrx.com but it is a great website with invaluable information. If you click on "RSD Puzzles" it has about 160 some-odd questions/scenarios. It answers questions I haven't even thought of yet. I highly recommend anyone with RSD check it out, no matter how long one has been living with RSD. Anyway, it is clear to me that my mouth pain is related and I am going to print out every answer that indicates the relation and take to my next appt. I went on another dental website and described my situation and I got an email back that suggests that I may have TMJ based on my situation and symptoms, it is relative to RSD, along with many other illnesses that go hand in hand with TMJ.

I did the same thing you did x my appt., forgetting to ask some questions. That is great that you were able to communicate via email! I briefly skimmed over your post to Bussey. I didn't get to read it really so I am going to go back now. I was running late for a Huly 4th celebration at my next door neighbors. I did see that you were hit head on. OMG, how horrible, Reta. That must have been terrifying. How are you feeling and is there anything new? I will check in tomorrow. I am going to read your post and then go to bed and TRY to sleep for more than a couple of hours, hand and mouth are pretty bad right now. We are having unseasonably COLD weather and that is not helping, also aggravating my Raynaud's syndrome. I am exhausted from all of this unrelenting pain. Hopefully tomorrow will be a better day for all of us.

Take good care,
Terri