Hi,
I posted the below on the welcome new member intro board and I was referred to here.

I was attempting to look up some detailed information on RSD and just took a chance clicking on your link and I think it was the right thing to do...so thanks for being here.

I was diagnosed with RSD after a broken hand from a car wreck in June, 2004. I had never heard of it before and it was a very scary time as this was a w/c injury and decisions are very slow in coming for treatment. I had terrific doctors who kept me very confident that all would be well.

I read a little of the medication threads about Lyrica. I also was on Neurontin. Had no side effects while taking it as it was slowly built up in my system, but the side effects coming off it were not very good. I did that myself as I thought I was cured!! When that didn't seem to be working too well, the physical therapy doctor asked me to try Lyrica. He wanted to work my dosage up to at least 100mg 3x's a day; however, I did gain weight quickly - much to my total dismay. I take 75mg in the morning, and 50mg at midday and 50 mg at night. My primary physician asked me if I thought it worked as he will refill prescriptions that are already in force, but won't give it as a new script as he feels it is still too new. I do feel that it must be doing something, but what??? When I try to cut out the midday dose, I do feel more pain so? It's all a trial as everyone is different.

Now, my initial reason for looking for info is: I am to have periodontal work done early March and I'm scared. I had a tooth pulled and for at least 4 days after I had tremendous pain in my hand, forearm upper arm and shoulder. My husband is a bit leery about my going forward with the dental work as we don't know how I will react and RSD is still so unknown - neither of the dentists seem to have heard of it. So if anyone has any experience in this arena, I would certainly appreciate it. Also, info on flare ups would be so helpful. Dealing with pain everyday even when it is not at its worst is so tiring and energy zapping. Is there a way to prevent flareups? Will this ever go away? I know I am doing so much better than so many others, but this is so nice to be able to say these things 'out loud'. Anyone I've tried to discuss it with just worries about me and I don't want that.

I guess that's the long and short of it for now. Thank You.

Thanks for reading all this and a very beautiful weekend is wished for you all.
Cathy

Welcome to the family. There are several people that have had dental work so I'm sure there will be some come forward soon to talk about it.

As far as flareups. I don't know how anyone keeps them down. I have found you don't have to do anything to bring them on. The barometric pressure changing sets me off more then anything. I try to also stay off of my feet as much as I can but I cannot sat still for any length of time. My Dr. is always telling me to keep my legs propped up for other problems. First you have to be able to sit still.

Is the RSD still retained to you hand only or has it spread. It can spread but every person is different with it. Mine started in my right arm and hand from TOS surgery and now I have it in my right foot up to my knee, in my right side and pelvic area from surgeries, and it mirrors over to the left side at times.

Have you had blocks to try and contain it? They seem to help a lot of people.

I've never delt with WC but I have friends that are dealing with it and I never could understand how the government could let people be treated as dirty as WC victims are treated.

Anyway, just hang on and others will post to help you.
Ada

Hi Ada,
Thank you for your very nice response. Let me first address the W/C...I was sent to 'present' myself to 2 of their doctors at different times and they were the nicest, kindest people and were almost angry they I had to be there. So there are a lot of nice people left! Just sometimes not when you need them.

I did have blocks done and they did help. That was part of the frightening thing about this condition that I had never heard of...they told me I only had 30 days after diagnosis to try and stop the bad spread. That was the difficult part about w/c. They just take so long and I dragged my feet a bit, 'cause I wondered what if his hand would slip, there is only a very small area near the windpipe that they do the shot. Anyway, that all went well and I guess my story might be different, but similar to others. I just felt so rushed.

Mine does not show now; I luckily do not have the purple swelling; I feel very fortunate for that. I have the pain it seems always, just sometimes worse. And yes, the barometric pressure usually hits me 2 days before. As to it spreading, I don't know. For a while my right hand was being just as painful and moving up the forearm; I demanded an xray and nothing was wrong. I was told I was compensating for the left hand and overworking it. I do generally have more leg aches and sciatic nerve attacks, but I'm also in my 50's so what can you expect???? I do try and keep moving more and exercising; I am trying to lose weight so all in all I am trying to keep focused.

I appreciate your kindness.
Cathy

Cathy,

Welcome, sorry it is due to RSD.

I would like to try to answer your question about dental work if I can. Back in mid December I had several teeth pulled and 2 posts implanted out of the 4 they wanted to put in. These posts are implanted in my jaw bone and will eventually attach to the teeth. I had my dentist numb my entire mouth, top and bottom. On February 13 I am getting the other 2 posts implanted. So far I haven't had any problems. Some on the forum will recommend a nerve block prior to any major dental work or surgery of any kind. I would recommend that you discuss this question with your PM Doc!!!!!!!!!!!!

Flare ups are just that, flare ups. They can come on out of the blue for no reason, with stress, or weather and barometric changes. If you honestly want to prevent the worst flares, move to the desert. Thats where we lived when I was injured. IMHO I don't think they really can be prevented however moving to the desert sounds pretty good to me after all this cold weather.

By the way I am older than you and probably have more aches and pains.

Good luck on the dental work.

Barb - I saw your note in your sig about finding a doctor in PA. I lived there when I was diagnosed. Now, you live very far west of where I lived, but there are some great doctors for RSD in the Hershey/Harrisburg area - at the very least, contacting people there might get you a referral to someone near you. Best!

Hi Cathy,

I have had RSD for about 3 years and dental work is deadly to a person with RSD. I started with an implant just as a normal procedure and unaware of the circumtances. My pain doctor stopped me from continuing and called my dentist and explained to him the relationship between dental work and RSD. I don't know the exact explanation but I believe it has something to do with the nerves they are very sensative in that area of the body and react to the RSD very badly. So I have been living with a temporary tooth for over a year I hate it.

Make sure your dentist knows you have RSD...
Good Luck.....Ann

Ann, Barb, Broadway Babe, Ada...First of all thank you all for sharing your situations, comments and suggestions. I guess you do know how much I need to hear some of these things.

See, that's the thing about the dental work. I have told both offices and they kind of just look at you and apparently never look it up to see what it is. It's a good suggestion about talking to the pain management doctor and see what they think. I will definitely do that !

As a general rule does anyone have an opinion about whether exercise makes this worse or better. I have had both experiences but know that I need to keep it up - I can't sit still for very long either Ada. I've led an active, physical life and don't want this to stop me, if I can help it.

Anyway, Happy Monday...it's dreary and damp with rain to come in Houston, but at least it's not 110 inches of snow!!!! Thanks all, till next time

Hey there - Nice to meet you - Sorry it's for this reason.....

Heres my opinion on staying active.....I personally feel that staying as active as possible is important. My husband has RSD and I truly believe that if he was not as active as he was he'd be wheelchair bound by now....Don't go till your "dropping over dead" with pain, but be as active as you can for a number of reasons. #1. Sanity #2. Some of the meds your on - will be on, etc could cause weight gain. #3. To keep the rest of your body fit #4. To prevent muscle atrophy

My husband put on a lot of weight following the RSD in his leg - put on mainly by meds and inactivity (not by choice but due to the RSD being in his leg - It was hard for him to get around...) - it was extremely hard for him to loose weight. But he did it - I feel that anyone who can stand to loose some weight do it as quickly as you can - I believe (JMO) that the extra weight only makes the RSD worse. Not in the actual disease/condition it'self - but being able to fight it.....When my hubby lost the weight he was able to be more active and was able to fight back at the RSD more.....It didnt change the fact that he had RSD but the RSD was not completely ruling and dominating his life.

I just got back from a walk. I walk 3 and 1/2 miles when the weather is nice and I've done it for about 6 years. I use to walk and cry from the TOS and RSD. I'm a glutten for punishment.

I do exercise also. I am having trouble with the stairstepper, I just put it away last week and said no more. I think it's one of the things that sat my leg and foot pain off and made my pelvic pain worse. I bought it new about a year ago but decided it wasn't for me.

I like a treadmill but the button messed up on mine so I can't use it now but with the spring coming on I am hoping I can just take up walking for now.

I am 55 so I am old too. As most everyone knows on here I lost my better half in Nov. so I am now trying to take care of myself. Most of the time it's not working. LOL

I did take my Methadone before my walk. It was time for it so I knew if I waited until time to take it then I wouldn't be in pain for awhile anyway. My nights have been the worst though.

Barb's right about your dental work, I would definately talk to your PM Dr. first he might have some suggestions on how to protect yourself from more pain. I have had 7 surgeries since developing RSD and I have had blocks before every one of them but 2 and that is where my RSD is the worst so I believe in blocks.

Like you I try and keep my weight down so as not to make my medical problems worse so I won't give up exercising but I think you just have to know when to quit and how much to do. I am now lifting 5 lb weights and I just started doing it about a month ago for me that's good with TOS though.

Like I said, I'm either a glutton for punishment or just plain stupid. I just don't give up. Like Hubbywith RSD's husband, I am determined to stay out of a wheelchair as long as I can.

With WC. I have a friend that got his arm ripped off and his guts ripped out about 4 years ago on the job by his own bosses' hands. His boss turned on the machine that ripped it off and he is still fighting WC. His lawyer called him last year and told him not to go hunting because WC was taking pictures of him. Troy has had at least 7 surgeries since this happened to put his guts back in with mash. They have already told him he won't live to see 50. That tells me that WC is the most horrible business out there.

Ada

Ada

Follow up....

I've taken your advice about the dental work and I still have not made a decision. The nurse at the PM's talked to him and he said that as long as I am not having any active symptoms of the RSD - I take from that he means thw swelling and mottling and shinyness, then what the periodontist will use should work just fine. The pain, I guess is not an issue; I'm thinking they all figure it will always be, just to a greater or lesser extent. So now I've just been procratinating calling the perio's office to find out exactly what they are going to use to keep my body calm. Just telling me I won't remember being there is not enough, hubby and I are worried more about the aftermath.

Anyway thank you all and Ada, I'm so sorry about your better half's death. It's only a couple of months and you have so much to handle and you're so compassionate on these boards. Thank you and may you find much much peace to calm and soothe your heart.
Cathy