Reflex Sympathetic Dystrophy (RSD)

[puppyloverof2]

I am so glad you will get those referrals on Friday, Lori. Yeah! You are on top of this. Just keep at it. Will you be getting your cast off Friday? I bet you cannot wait. Be careful not to over-do it but try and keep your leg moving even if sitting or lying down, you can exercise it. That is one thing I have read from many different sites is the worse thing you can do for RSD is to NOT keep the afflicted limb/ankle moving. I am new to all of this information myself but my take on it is if you don't keep it moving then that is when the muscles start wasting and in the WORST possible case scenario, gangrene can set in. I know this will not happen to you but that should tell you how very important keeping mobile is. After my surgery 1 yr ago May, and before I had been to physical therapy I was in such horrible pain and didn't know why, my 1st inclination (probably most people at first) was NOT to move it. Fortunately I learned shortly thereafter to get it moving but not to the point that it hurts. Just gentle exercising to build up range of motion.

I'm glad to hear from you and keep up the good attitude. If your primary doesn't know much about RSD, maybe in the 2 weeks that will have gone by, she has educated herself. Keep us posted and GOOD LUCK on Friday! Have a great night, Lori
Take good care,
Terri

[puppyloverof2]

Hi ~ Sorry for the absence and delay in response. I have been in pretty bad shape. I made an appt. with my primary on Wed for Thur. x 1:40 to deal with TMJ symptoms and told them I needed a referral for a Neuro, so after taking a shower (wore me out) and getting out in the heat and driving, I showed up on time and what was in store for me absolutely SHOCKED me. I signed in and the office lady said " Oh Jonathon said he can't see you. I said , "WHAT? What do you mean. I have all these symptoms that I don't know what is wrong and I need a referral for a Neuro, as I said yesterday on the phone" and she told me to have a seat. Then a nurse called me around the corner and said "Jonathon said you just saw your pain manager and got oxycon" . "Istopped her mid-sentence and said I am not here to get pain medicine I HAVE
pain medicine. I am here about new symptoms and I need a f******* referral" (I didn't say f********, but I sure as hell wanted to) and she said "Well, you can tell them at the desk and leave a message that you want a referral". I said, "I already left that information when I called and recieved my appt. time of 1:40. Now Jonathon is refusing to see me and I am leaving here with no referral". "I drove 45 minutes to get here not to mention the hell I have to go through to get ready. WHY did someone not call me and tell me this?" Of course she says "I don't know" . I was so furious I went to my car and just cried with my head on the steering wheel. I called my PM's nurse while in the car (PM is on vacation) just to document what happened because she actually called Jonathon's office when I saw her on 7-1 (he was off) and she told she wanted me to go see him and to a neurologist. Well, since we didn't have a good appt. anyway, she forgot to give me the referral. So I told ther nurse I guess I have no choice but to go to the ER since my primary has refused to see me. Last time I was him was for a flu shot last Oct.! Can you believe this s***????

This morning I had a meeting with my atty. and from there I went straight to the ER. They gave me a shot of Toradol with a rx for 20 to take every 6 hours for the next 3 days and a referral for a Neurologist as weel as they called and made an appt. for me for July 21st.

Talk about having to jump through rings of fire to get a f******* referral. The good news is, my pain is gone....for now. My husband is off for the next 3 days and after this past week I feel I need to get away and get some peace. I am hoping we can take the babies and go for a drive up to Ithaca to Buttermilk Falls or something like that. Sounds good right now.

How are ya'll doing.?

Terri

Well,

[reruho]

Terri,
I am glad you finally got some relief. I think your primary is afraid of you because you are now a very complicated case. That does not excuse them for treating your so badly. First he made a bad assumption that you wanted meds. He did not take the time to listen to you and your problems, which he was already aware of. He should have been a man and said to your face, "I can't help you or I don't know what to do for you." I think it is time to change doctors since your relationship has been permanent damaged. I would not trust him anymore since he has deemed you a drug seeker and has abandoned you when you were in need of help. You now have an appointment with a Neuro, I hope he/she will be able to help you. Are they any closer than your PM or Primary?

The toradol gave me good pain relief for 5 days. I really hope you get that much or more since you have 3 days of the pills. I truly hope it last till your appointment date. Please read up on it.

I hope you have the chance to get away and relax since you have some pain control. You have been in pain too long.

Reta

[puppyloverof2]

Hi Reta,

Good to hear from you. Yes this Neuro is right next door to Lourdes hospital where I went to the ER. It is still about 45 minutes away, but that is just because we are out in the country. Binghamton is the next largest city for us, so it is not that bad. To be honest when I called my PM's nurse, I really didn't like her attitude. I mean she was just not her bubbly self with me like she was prior to my last appt. She was glad I called and all but just not very helpful in helping get my notes faxed to the Neuro. But maybe I expected too much from her. She was probably just busy. I agree I will look for a new Primary after my neuro appt. Maybe he will have a referral for someone who knows about RSD. Jonathon is not a full fledged MD anyway.

As far as the toradol, I am still being relieved of the horrible mouth pain. I started to feel just a tinge this morning so I took a half of a percoset just so I could enjoy my breakfast we are having shortly. I haven't had to take a Perc. since I got the shot until this am. A far cry from the 8 a day I had been taking and sometimes I had to have it throughout the night. I usually have to take 2 of the 10/325 so they are pretty strong but they do not make me feel high per say just gives me some temporary relief
that I have to have. Pain stresses our bodies so much it is just terrible. I actually got some sleep! I had to set my alarm to get up for the next dose of toradol. I read all the cautions the hospital gave me on the drug and WOW, I must say it is a pretty scary drug if someone did not take it as prescribed as I am sure you know, oh too well.

How are YOU doing? Is it a nice weekend there? My 92 yr old step-dad lives in Orlando with my ex- brother-in-law. It is a strange situation due to my sister being re-married and all! He still calls her all the time. My sister's current husband had to fly back to Orlando a couple of months ago and Steve, (the ex) was going to ppick him up at the airport. Well his plane was delayed in Houston so he asked my sister to call HIS ex-husband and tell him he would be late, lol! Anyway, what I was going to say is I ordered a fruit basket from Edible Expressions for the both of them (steve is juvenile diabetic so he has a strict diet and on insulin pump) and he actually went and picked it up for me since they charge a ridiculous del. fee. He said it was so nice and soo much fruit. The great thing was when you spend a certain amt. they threw in a box of choc. covered strawberries and he said "Pop" had eaten 3 before the box sat on the table!!! I highly recommend them for any gift or treat. Unlike flower deliveries, I know the fruit is guaranteed to be be the best of the season and they arrange them in such beautiful arrangments like flowers. Maybe you have seen the shops, they are all over now. Check them out at www.ediblearrangements.com. It may appear pricey but trust me the amount they include is huge and I have ordered the small size twice. I sent last year too. Anyway, just because you are in FL and I ordered them for my FL POP it made me think of it! My adhd running a muck maybe, lol!

Anywho, hope you have a wonderful, pain free weekend!

Talk later,
Terri

[reruho]

Terri,

I have had the pleasure of an Edible Arrangement. We have had a couple come in at church for funerals. They are great. The fruit always ripe and tastes great. The arrangements weigh a ton because they use a couple heads of cabbage or lettuce instead of the green stuff they use for flowers. (The fog is rolling in, can remember the right words.) I think we have 4 Edible Arrangements stores in Jacksonville. I thought it would be fun to work there just to learn how to make one. The chocolate covered strawberry basket looks really tasty.

I planted a Bounginvilla yesterday. I put outside besides the outside light in the front yard. It is a white and pale pink color. I can't wait for it to get bigger and start to bloom. I planted a pink Mandevilla at the base of one of my pecan trees. I will be glad to see it start blooming again. It looks like it is starting to thrive again, I almost waited too long to plant it. It was starting to look pretty sad. Here in Florida, you can grow just about anything. Most of the time you just plant it or drop a leaf off a plant and it will grow. I do miss Lilacs, they can not tolerate this heat. My grandmother's bushes were still blooming when I was out in Washington this summer. It brought back memories of my childhood.

I guess it is time to get back to work, the laundry is calling. It is raining again, so we get out of mowing the lawn today.

Enjoy your weekend with you husband.

Reta

[chrisandrob4ever]

Hi
I also have RSD/CRPS in my left foot ankle area. I had my teeth cleaned the other day and it hurt so bad and that was just my 6 month check up. Thankfully my dentist is familiar with RSD. He took his time and let me cry if needed. My only problem was that he found an area of concern under my tounge and I had to have a biopsy. We got those results and I had stage 2 cancer at 34 years old. Please make sure you keep your dental appoinments because I almost canceled mine.