Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 10-13-2008, 03:55 PM #1
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Default Online Pain Diary?

Hi All,

My husband stumbled across an interesting site yesterday called reliefinsite.http://www.reliefinsite.com/ I have never heard of it before but I think it is a very unique concept. It allows the patient to maintain a daily interactive pain diary that you can allow your doctors, caregivers and family (if you choose) to assess the information. There is a video on the front page with a patient who has RSD and she explains how it has helped her manage her pain and treatment.

Has anyone here been using this? If so do you use the free version or did you upgrade to the subscription service? If you are using the subscription service do you find it easy to use? Is there greater value in using the subscription service? I'm thinking about using this but I don't want to spend the money if the free version is sufficient and would really appreciate your feedback. I'm also a bit concerned that it could make me too focused on my pain as I typically try to distract myself away from the realities of my pain if I can.

Thanks

Ms.L
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Old 10-13-2008, 06:37 PM #2
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Default Pain diary...but not online

Hello Ms.L,

Many pain sufferers maintain pain journals or diaries including myself. These are very helpful in keeping accurate records of what happens and when. I must admit that I don't log daily events the way that I used to because situation is more stable now. But all significant events are logged in my records.

I have not seen the site that you mentioned, but I kept my own detailed journal on my PC (and on paper when I was away from the computer). My advice would be to do a diary on your own, don't pay for it. There are several good links that you can explore to get a good idea of what information to include in your diary, etc., etc...

If you ask around I am sure that people here on the forum may have a wealth of information or links to help get you started learning about medical journals/diaries. Some sites have pages that you can print out and use as is.

I hope this helps you.

Best regards,

EJ
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Old 10-13-2008, 07:59 PM #3
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I use the free version and it does just fine. I don't see why paying money I don't have for something that's supposed to be "better". LOL Anyway....they send you reminders to your email once a week I think it is. I find it helpful in keeping track of everything that happen with me. Writing is difficult for me now so moving little dots around and typing a few words is so much easier!

I don't feel that it makes me focus on my pain anymore than I ever have. I've kept and still keep myself busy as I possibly can. I feel this is one way to help me put things down because I can forget things 2 minutes after they happen, also the weather and if it's making my pain worse, stuff like that.

Hope this has helped you.

Hugs,

Karen
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Old 10-13-2008, 09:49 PM #4
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Hi Karen & EJ,

Thanks for your feedback about keeping pain diaries. I signed up for the free version today. I was wondering if the premium paid version allowes one to record medications side effects and reactions. Karen have you shared your pain diary with your doctor or other health professionals? If so what feedback have they given you about it. It seems like such a great tool I was wondering if doctors will use it to help in treatment management or if they just dismiss it. I'm going for lidocaine tomorrow and I will ask my pm doc if he is interested in participating in this with me.

I also found another interesting site called patinetslikeme.com http://www.patientslikeme.com/ It is a slightly different concept from the pain diary and I really like the fact that they can track different treatments and side effects based on what other patients report. Currently the focus is primarily for patients suffering from ALS, MS Parkinsons etc. I contacted them and asked them to include RSD but it looks like they are still working on adding other diseases. I think this could be really useful for those of us suffering this horrible disease. Perhaps if others ask for an RSD category to be added they will include it sooner rather than later.

I think these sites show great promise in helping patients manage their health.

Big hugs.

MsL
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Old 10-13-2008, 11:52 PM #5
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Thanks for mentioning that site - http://www.reliefinsite.com/

I think a few of our other forums would find it very useful.
Specifically Chronic pain, Spinal, Thoracic Outlet Syndrome...
hope you don't mind me sharing the info & link on those forums.
Thank you
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Old 10-14-2008, 02:22 PM #6
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Hi Jo,

By all means please do share this with others in the different forums. I spoke with my pm doctor this morning and he is very open to participating with me and will monitor my pain diary. I feel very happy that he is so receptive to this.

I hope it helps everyone who decides to use it.

MsL
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Old 10-14-2008, 04:30 PM #7
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Hi MsL,

I use the Reliefinsite pain diary and I find it useful. I have been using it for about 3 months now and I find it very useful to give to my Doctors rather than having to explain everything. I also find that it is great at keeping track on how your pain has been, if you have noticed any additional pains/symptoms etc. I use the Free Version and find it very suitable for what I am looking for.

I know the lady that made the video about the Pain Diary (I met her on another site) and she was the one who suggested that I keep a diary.

If you have any questions, please let me know!

Alison
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Old 10-14-2008, 06:58 PM #8
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Thank you for the link. I keep on on paper but i may switch over to online. I will check it ou & even pass it on to my friends.
hugs, Denny
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Old 10-14-2008, 08:06 PM #9
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It definitely helps the doc. I go see my doc once every 3 months so showing him this allows him to monitor how I've been between visits. I forget things really fast too so for both of us this helps immensely. It helps to see if I need a change in meds as well. My doc is pretty awesome and loved the fact that I keep track of myself like this. It really helps that I have kept a journal pretty much my whole life. LOL This just became another type of journal.

Hugs,

Karen
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