Reflex Sympathetic Dystrophy (RSD)

[reruho]

Bussey,
I think the concept of stages is more historial. I firmly agree with you that the symptoms can progress past those listed as Stage 2. I am convinced that the stages were developed more for doctors than patients. I think doctors like the concept of stages because it makes things easier for them to classify their patients. We all know you may not have all the symptoms of one stage at a time, you may never have some of the symptoms and you can symptoms from 2 stages at once, which confuses everyone. This disease does not follow a timeline or a defined path, it meanders all over the place. This disease in unique to each person.

Think we new a new way to redefine stage but I have no ideal how we would do it.

Reta

[puppyloverof2]

Hi lschlege ~ Bless your heart. I'm so sorry you are having to go through this. I do think you are very fortunate to have an informed PT! I soo hope that will make you able to get ahead of the game. I cannot imagine you having to deal with the sensitivity and wearing a boot cast. I hope you will be able to get out of the cast soon. Once you are out of the cast, I'm sure your PT will direct you to try and desensitize your leg/ankle. You can start do this asap when your cast is off by simply taking a washcloth and lightly and gently brush it across the sensitive area just a few strokes at a time and then change to a different texture like that of a paper towel, and then a scarf. I think you are fine on the time-frame because you are already ahead of the game. If it were me the first thing I would find a Pain Clinic. I am sure your surgeon can refer you but just don't let them jerk you around and delay you getting in for an appt. My first experience was terrible because my surgeon referred me by sending my records without me being involved and they were supposed to call with an appt. Well, they didn't and I let 4 weeks go by (stupid on my part, but I thought I was in good hands) before I called my surgeon to find out where it was he sent my records. I guess because the Pain Clinic read my file they knew they couldn't treat me, however they didn't bother calling to tell me that. I was furious to say the least. They said they would send my records next door to a different pain clinic and they couldn't help me either. I took control then and found my own Pain Management Group however it is a 2 hour drive away. But they have helped me and are very good to me, for the most part.

During this waiting time for you, I would go to www.rsdrx.com and learn as much as you can before you even get to a doctor to address your RSD. It could be a neurologist, or surgeon. Just learn about the treatments that they may suggest to do since your diagnosis is early and that is great news for you. Like I said, you are ahead of the game. When the doctor suggests a treatment option you will already be familiar and it won't be so scary. Like Reta said in a recent post (that I haven't been able to respond to yet), different treatments work for different people.

Also don't let my bad experience with the dentist keep you from taking care of your teeth. Just educate yourself on RSD & Dental Work (they talk about it on the www.rsdrx.com and the "rsd puzzles" link by Dr. Hooshman). The main thing that I learned after the fact is that medicines like oxycontin promote decay or do something that causes some people to lose teeth if taken for a long period of time. I am going to get off mine asap(with the help of my PM, I think I will have to wean myself off of it) and I think I want to try a non-narcotic. All of my teeth are hurting as of today.

Thank you for telling me I am not weak! I have just read so many stories from so many people that are so much more severe, I just don't want to be a whiner but the pain is excruciating, none the less.

You hang in there and take care of your teeth! Like Reta said, get a soft toothbrush and gargle a lot!
Keep us posted on how you are doing and learn, learn, learn all you can. You will know more about RSD than most doctors by the time you get an appt. and that is a good thing!

Take good care,
Terri

[puppyloverof2]

WOW, what an amazing trip! I had to laugh about you "wanting to murder my dad"! I can picture that cause when I was in OKC (for 3 LONG months) taking care of my dad, doing his job to keep his income rolling in, taking to the dr., going to pancreatic cancer support groups with him, reorganizing his house, (my step-mom had a brain annurism in 1999 and is a quadrapalegic x home with 24/7 care so you can imagine how the house was just let go) - even tho I did all that he still had to "pick" as you say your dad did! I don't know about you but when I am in a lot of pain, my irritation level is very low. I have relatives (on my step-mom's side) that live in Olympia, WA and we made that trip when I was a child from OK. Camped in Oregon, dug for clams, visited Mt. Ranier. Visited the Grand Canyon, went to LA. and the Redwood Forest. It was the trip of a lifetime for a kid.

I am so sorry about your gall bladder problems. My God, why does there have to be so many other problems to deal with along with this damn disease. My hubby had gall-bladder removed laproscopically in 2007. Is that not possible or you want to leave it alone because of the RSD?

My dad also has Periphial Neuropathy and he is diabetic so he is on Lyrica. I know it is terribly expensive and it cost my dad more than I had to pay so I sent all mine to him as well.

I have never taken medication for Raynaud's nor have I been tested. The symptoms have not returned but I am very careful about cold running water and I haven't been swimming which is one thing I was looking forward to doing after moving here from FL, was to swim in the lakes ~ NO GATORS!
I think once I go to a Neurologist, he/she will address all of these phenomenons, hopefully. I just hope I can find one with knowledge of RSD & Raynaud's. My shoulder pain must just be RSD since the shoulder/hand syndrome I read about is another name for RSD. Yesterday (Monday) I still had the shoulder pain and my left hand was numb and then my right arm went numb. I guess this is possibly my kind of "flare-up" like Bussey was talking about that has happened to her. I haven't had all these things happen before simultaneously. I wish the medical profession would get it together so that all PM's are telling their patients the same thing nation (world) wide regarding the spreading of, etc. That is the frustrating part.

I was reading one of your other posts and I don't have the muscle waste as of yet I don't think, probably credit of the PT and my keeping it moving even after. Sometimes my palms/fingers turn red and splotchy. I still have sensitivity where the incision began and there is something sticking up under the skin like it is a nerve or something at my wrist and when it is touched directly with the slightest of pressure, it creates sensitivity in the middle of my palm. But still has the sensitivity when clothing or sheets brush it lightly. Very strange.

Yesterday my mouth and teeth hurt so badly I was sick to my stomach, sweating and pacing it was horrible. I think I am going to have to go to the ER if it keeps up at this pace. The way you described the pain for TMJ, it is definitely worth looking into. I wouldn't mind the weight loss side effect from IMJ. I have gained 20+ lbs. due to the Nortiptyline and sitting around and dealing with the cravings as you said "mindless eating". Would a neurologist (or other specialist) be able to diagnose TMJ or do I HAVE to go to a dentist for that? I am really so scared to go to any dentist, I am just afraid they are going to want to explore and I can't have that. I know it is just one dentist that created this fear, but now I don't trust any of them. I agree that whatever it is causing my mouth pain, it is somehow related to the RSD, due to the nerves. It feels like nerve pain but the pain is not limited to the lower side anymore. You mentioned you had a question about the toradol for your PM? I may want to get an injection if it lasted you 5 days. Were there any side effects from it?

You have a 13 yr old son? I hope he is a good son and continues to be. I cannot imagine going through this RSD and having to take care of any kids. My daughter will be 27 this August. She was a terror as a teenager.

Thanks for all of your input. Talk to you later.
Terri

[reruho]

Terri
I was going to answer your comments yesterday but I wasn't feeling very good. I tried an experiment of lowering my MOTRIN from 600mg to 400mg. it probably didn't help that it was a rainy day. I am going to ask my pharmacist if they make a 500 mg MOTRIN or if I can split them. One of my liver enzymes looks like it is one te rise again. I took CELEBREX for a year and had to stop because of this. It was a low level elevation never more than 20 point about the upper limit but it was there every blood test. I don't think my doctor would have suggested stopping it if I hadn't put all my labs on a spread sheet. My thought was--How will you be able to see trends when you have to flip back and forth from page to page. My old primary loved my speadsheet when we were talking abut my choslesterol.

First, I will answer the TORADOL question. After I got the shot I went home to research it since they didn't give me any information. I remember the nurse asking if I was taking any BLOOD THINNERS, which I answered yes and gave her my typed list of meds. One of the warning was not to take TORADOL if you take TRENTAL. I was actually due to take it at the time I had the shot. My question was when I could I take the TRENTAL again. I emailed my question to them that night. I had to go to get a refill the next day and I asked the pharmacist and she said to wait 24 hours since I only got the shot and was not continuing with the pills for a full course of 5 days. I called 3 times on Thursday and could never connect with a nurse, then I called again from Orlando as I am sitting in the airport waiting to board the plane to Alaska. I waited 48 hours befor I resumed taking my TRENTAL. I think the PM realized this when I brought it up and then tried to downplayed it by saying everything has side effects. This was one of two drugs it specificly named and told not to mix.

I had read that sometimes people had been misdiagnosed with Raynaud's. I started doing research and found many of the symptoms are very similar in my case. One of my major complaints was that my arm would get so cold it would hurt. I often wanted to cry. I was freezing and burning at the same time and no one had answer or a solution for the problem. So I took matters into my own hands and did the research and talked to my primary. I was surprised that he said I can prescribe that to try it. I saw him every 6-8 weeks last year. He was a wonderful doctor that would xplan things to me and answer any question I had.

I am delaying gall bladder surgery until I have to do it, I am afraid of surgery making my RSD worse. The PM says it is less of problem since it is in the trunk area and on the opposte side of my body.

The gallbladder started in the late 80's. I am so angry that the first GI I was referred to did not do a HIDA Scan, which was around at the time. I was treated for the wrong problem for years. I was the one that figured out that it wasn't IBS. One of the major symptoms of IBS is bowel dysfunction, which I have never had. I finally got a GI to listen to me 2 years ago and I got the corect diagnosis. It makes me angry that no one would listen to my reasons for IBS being wrong.One doctor asked me if I was in the medical field when I presented my arguments.

I think incision sensitivty is normal. I am pretty sure that should improve with time. Those nerves have to heal. I am happy you do not have any muscle atrophy, keep moving and using those mucsles to maintain the muscle tone. Do you notice your sensitivity is directly related to your pain levels? I find my sensitivty increases as my pain increases.

About your mouth/jaw, go back to your dentist and ask for a referral to a specialist that deals with TMJ. Alot of times they can call and get you in much faster than you can on your own. Try today, you should not suffer anymore. I will do some research on TMJ today. It has been so long since my bout, that I can't remember much but the pain. the muscle spasms from my jaw down my neck were horrible. Night time was the worst time of all. I remember that walking really helped me. I must have walkeed miles up and down my block. I think it helps you to de-stress. The longer you delay treatment, the higher the pain levels get.

I have to go, I feel one of those dark moods coming on. I will get up and get busy to try and chase it away.

[reruho]

Terri,
Call your dentist immediately and tell them YOU MUST BE SEEN IMMEDIATELY, THAT YOU ARE IN EXTREME PAIN. Don't delay. Your shoulder is probably hurting because of your jaw.
Reta

[puppyloverof2]

Hi Reta,
I was just reading Bussey's post "Is it just me" and I read all of the responses and I can't believe you take medication for ADHD. I do too! We really do have more things in common the more we write! What do you take for it? I take Adderall 40 mg am and 5 mg in the afternoon. I have noticed since I am on all of this other medication that I am not really feeling the positive effects of the Adderall that I used to because I am really having a hard time finding words I am looking for and struggle more when speaking to someone face to face. Also, my food cravings have run a muck. Before my CTR surgery 1 year ago, I weighed 120 lbs which is just about right for me. When I left OK in Nov. 2007, I weighed 99 lbs. so the weight gain is really causing a lot of image problems for me and the fact that I will turn the big "50" this year doesn't help. I have always been so active and "freakishly" strong for my size (I am 5' 2.5" unless I am shrinking too!) the current "me" is just so not the "me" I have always been. Another thing we have in common is that to look at me you cannot tell there is anything wrong with me unless I point out certain things about my hand.

Yesterday & today my symptoms are increasing. I noticed last night that I am having involuntary movements or spasms (I don't think they are spasms because they do not cause pain) but I don't know how else to describe them right now. These movements happen all over my body, not all at the same. Does this sound familiar? Also I have noticed since I have been typing more that I have developed strong signs of dyslexia being present. As soon as I get some relief, (maybe from that Toradol injection if I can drive myself to the ER and still get the shot?) I am going to check out the speech recognition program on my computer that Paulette (Bussey) uses and she loves because my shoulders, as of this minute, both right and left are killing me, not to mention my hands today.

How are you doing today? Oh yes, I forgot to respond about the SSD. My atty's are appealing because the judge sought the opinion of a vocational "expert" (and I use that term loosely), after my hearing was over and my atty. objected in writing and asked to cross-examine the expert as well as requesting an "in-person" hearing as opposed to the video hearing like the 1st one. Also they have instructed me to file a new SSD claim and I have 60 days to do that and that is why I am researching RSD so much now, (I have learned much more in the last 2 weeks than I knew at the time of the first filing). I know I need to get to the doctors asap to get diagnosed with whatever else is wrong with me however I am going to find the right doctor, not just any doctor. The doctor the SS sent me to for evaluation (this was before my surgery) had me do a couple of things with my hand to see the extent of my limitations and the one that so absurd was a square of fabric with an inch long button hole and a button. ANYONE could have buttoned the fabric. I probably could have done it the day I got out of surgery it was that absurd.

I will check back later, I need to let my babies out to play for a while. I hope you are having a good day.
Terri

[puppyloverof2]

Hi Paulette,

Thank you for your reply. I am so new to any forum, I wasn't sure about the proper etiquette. I did just read your post "Is it just me?" and I am heart-broken for you. I did not realize the gravity of how RSD has affected you. Bless your heart. I admire your inner strength and faith. This has been a rough morning on me, emotionally speaking. However my suffering pales in comparison to what you are going through, emotionally and physically.

I am so sorry you are still suffering from the flare up. I just feel so bad for you. I am going to have to write more to you later. I have been on the computer too much this morning. I will take a break and get back on later today.

Thinking of you,
Terri

[lschlege]

Terri,
You hit the nail right on the head! Today is Tue and I will see my Primary Dr. on Friday. I have to get her to give me the referrals. When I said I thought I had RSD the appt I got was 2 weeks out…making me think she is not knowledgeable of this condition.
I did go back to the surgeon as soon as my therapist feared RSD: all he said (several times) was “I sure hope you don’t have that!” But he did change my meds so that was good to something to dull the nerves, much better than the Oxi that just knocked me out. I also am taking Aleve for the swelling; 1 three times a day. I think it is helping. But I am not very mobile either, so it is hard to tell.
Thanks for your good wishes and I send the same to you!!
Lori

[puppyloverof2]

Dear Reta,
I do appreciate your concern and sense of urgency but since I won't go back to my dentist and have not found one yet that has any exp. or knowledge of RSD, I have emailed a contact on Dr. Hooshman's website where I clicked on the "RSD Info Request Form" and was trying to submit my info but could not get a verification code to do so, so I opted to email the contact address and explained my situation and gave my phone # because on info request form they ask if you want a phone call returned and of course I did. So I sent that email just to find out where to turn, as to what physician, etc.or to just go to the ER as my primary & PM are both on vacation. I just don't want to be bounced from here to there. If I am going to be in this pain, I would rather be in it at home rather than driving all over town and waiting in dr.'s offices. I understand from the internet that TMJ can be addressed by dentist, neurologist, PM and sometimes primary. My worst pain is at night. I am starting to be in a lot of pain again but it is time for me to take my pain meds so that will help for a couple of hours. I just don't feel like taking a shower and driving anywhere. My husband has to go to work x 2:30 this afternoon so he can't drive me anywhere and it is really storming outside and you know how that makes us feel.

I am so sorry that you had a bad day yesterday and that you are struggling today also. I will pray for your relief of pain and the gift of a happy heart for you. Terri

[reruho]

It is raining here again . It was actually prety nice, even though I could noy enjoy it. Depression is such aheavy burden at times. I found some mindless work to keep me occupied. I am not incapcitated like so many others. I just have to be carefulthat I do not over do it, as I have told others that can sometimes be a fine line that is quite fuzzy on days. I took the boys out for a walk, swept the stairs, washed the dishes and vacuumed the rug in the TV room. That helpedfeel better. I will be feeling much better later tonight, it is Tai Chi night and I always come home feeling better.

Maybe its the ADHD that has linked us. I knew there was something going on here. I had never realized that I was until after my son was diagnosed. I grew up in a family where everyone was ADHD and I was the most normal one. One day it just hit me. My daughter told me, I could have told you that." We have a research group that test meds and I went to them. I got the diagnosis and treatment for 4 months before the study was cancelled. After that, they saw me 2 more times and then I asked my Primary if he would manage my ADHD for me. The first thing I did was ask him to up my dose. I am taking 30 mg of Adderal XR. It had helped me tremedously. I never realized how much aniexty and stress filled my days, I was really a basket case. I would give up a lot of things before I would give up my Adderal.

The more you describe it, the more convinced I am it is TMJ. The pain being worse at night is a positive sign to me. There is a reason but it is beyond my foggy brain at this time. Have you tried heat? I think I used warm compresses on it. But, the walking was the most helpful thing I could do. I never had anyone prescribed any type of medication for it.

Another reason I said to go back to the dentist is have him check for any signs of infection. This dentist may be able to refer you to someone.

I will be 53 in September. After I turned 50 I had my first experience of age discrimination. I went in to get a flu shot and they just had that flu mist, it was the year we had the shortages of flu vaccines. The sign said ages 5 to 50. Welllllllllllllll, it turned out you had to be 49. They did not give it to you if you were 50. I had only turned 50 6 weeks before. I was a very strange experience.

I can't remember when I last weighted 120 pounds, when I was 11 or 12. At the end of 6th grade I had grown about 10 inches and was 5' 6.5", the next year I grew another inch. I was still the shortest person in my family. My mother and 2 brothers were all taller than me. Even at 5"8' I got all the short jokes. My 24 year old daughter is 5' 3.5", she didn't the height gene from me. I can imagine those 20 lbs on your are like 50 lbs on me. I know how badly you feel. I have been the process of losing weight over the l ast few years. I dropped 50 lbs 4 years ago, then regained baack 20 lbs and was devastated. I have have lost those 20 lbs again and am working on more. At the worst, I was 270 lbs. That was very hard to admit. My doctor wants me to lose more, a lot more. He told me not to go below 135, like that is going to happen to me.

I have to go and get ready for Tai Chi. I wish you a low pain night.
Reta