Guest guest Posted June 24, 2004 Report Share Posted June 24, 2004 Hi everyone, Just wanted to share a thought...since many of us seem to encounter some lack of support by our doctors concerning the reality of our Arthritis, I've begun to keep a daily journal, expressing how I feel " today " , what I'm doing for any pain encountered and what the result was by whatever measure I pursued to counter the pain. Right now I feel like they think I'm lying, because Arthritis pain isn't something that a person can gauge. Each time I've been undergoing some form of assessment, I've been under discomfort, but not enough at the moment to (not) do whatever " exercise " they may have me do. Yesterday, I felt so tired and all my " pain " areas were acting up. Couldn't do " diddly " yesterday. Today, I feel better....go figuer! Any other tips??? Thanks all, and hope the day goes easier for everyone. Jefersea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2004 Report Share Posted June 24, 2004 Hi Lori, Thank you for sharing this. I think it could be a very useful " tool " . Please send me a copy to my email: quaxter@... Thanks very much. More info the better, I think for all concerned. Thanks again, Jefersea [ ] Journal Hi everyone, Just wanted to share a thought...since many of us seem to encounter some lack of support by our doctors concerning the reality of our Arthritis, I've begun to keep a daily journal, expressing how I feel " today " , what I'm doing for any pain encountered and what the result was by whatever measure I pursued to counter the pain. Right now I feel like they think I'm lying, because Arthritis pain isn't something that a person can gauge. Each time I've been undergoing some form of assessment, I've been under discomfort, but not enough at the moment to (not) do whatever " exercise " they may have me do. Yesterday, I felt so tired and all my " pain " areas were acting up. Couldn't do " diddly " yesterday. Today, I feel better....go figuer! Any other tips??? Thanks all, and hope the day goes easier for everyone. Jefersea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2004 Report Share Posted June 24, 2004 Lori, the study sounds very interesting. I'm glad that you are able to participate in it. Please send me a copy of your form. I must warn you, though, that I have a Macintosh computer and might not be able to translate it, LOL. My five siblings and I recently participated in a Diabetes Heart study at Wake Forest Medical Center in Winston-Salem. We just had to go in one day and have lots of tests. We didn't all go at the same time; we went in pairs. I am the only one that lives near WS. One came from land; one from South Carolina, and the others from various places in NC. I am also participating in a Lung Cancer study. I've had a CT scan of my lungs two years and will have one more next year. I think it's interesting to be a part of medical research. You also get lots of free tests. Sue On Thursday, June 24, 2004, at 03:51 PM, Lori McKinley wrote: > > I just entered into an RA study at Duke University to study our > reaction to pain on a daily basis and how different techniques we use > affects our pain and daily moods. Right now, I'm in the beginning > stages, so I have to feel at 3 pages of questions for one month on my > pain levels and emotional status. It takes me 5 minutes at night, and > I think the form is very thorough. I can scan those, and if anyone > would like a copy emailed to them, I will send it out. Just send me > your email address. I saw my rhuemy yesterday, and he has asked that > I maintain a copy of these for myself so that he can review them as > well. I'm just thrilled that he cares that much! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2004 Report Share Posted June 24, 2004 Lori, is this an assessment routinely used in rheumatology? If so, what is its name? Or is it new and devised by and for Duke and/or the study? I'll tell you where to go! Mayo Clinic in Rochester http://www.mayoclinic.org/rochester s Hopkins Medicine http://www.hopkinsmedicine.org Re: [ ] Journal > Jefersea, > > I just entered into an RA study at Duke University to study our reaction to pain on a daily basis and how different techniques we use affects our pain and daily moods. Right now, I'm in the beginning stages, so I have to feel at 3 pages of questions for one month on my pain levels and emotional status. It takes me 5 minutes at night, and I think the form is very thorough. I can scan those, and if anyone would like a copy emailed to them, I will send it out. Just send me your email address. I saw my rhuemy yesterday, and he has asked that I maintain a copy of these for myself so that he can review them as well. I'm just thrilled that he cares that much! > > ~lori~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2004 Report Share Posted June 25, 2004 > Hi everyone, Each time I've been undergoing > some form of assessment, I've been under discomfort, but not enough > at the moment to (not) do whatever " exercise " they may have me do. > Yesterday, I felt so tired and all my " pain " areas were acting up. > Couldn't do " diddly " yesterday. Today, I feel better....go figuer! > > Any other tips??? > ***** Hi that is a brilliant idea! I can be in degrees of pain for weeks and months, then seem to go into remission. Like you I find some doctors believe what I have to say, some are very sceptical. Also, I try to fit in half an hours exercise each afternoon (gentle strecthing), which makes me quiet flexible most of the time. Although, it really doesn't help me walking up steps, on uneven ground, or sometimes just walking across the room. Sometimes, I can only take a step or two. I have been fighting for Disability Living Allowance for over a year now. One doctor came to my home on a middling day, and although I could only walk a few yards before I felt, sick, giddy and pain in my knees etc. said I could walk 100 yards. You need to walk less than a hundred yards, or say you have a heart condition,(that amount of walking would threaten your life), to qualify. Of course my request for DLA was turned down. I decided to fight this decision, and found someone to represent me, and put in an appeal. This was heard recently, and it was a 50/50 decision. I was awarded the Care Allowance, but turned down for Mobility. My representative was so incensed, she put in an appeal there and then against the decision, and demanded copies of all the paper work, used to work out any entitlement due. Although, I have already waited over a year now, it can still take another 6 months, for my case to be heard. Problem is my original doctor was a sceptic, and all over the appeal forms are Obesity, Obesity, Obesity. My Consultant's letter on the other hand was in my favour, but the Tribunal appears to have ignored it, and that is what we are fighting the appeal on. The Tribunal consisted of 4 people asking questions, and just me answering questions, my representative presented the paperwork, but could not speak for me until the case was over. In future, I think I will keep a Journal, and present it to any doctor who I see. Normally when asked how are things, I tend to relate to the last week or so!!! Carole ^^~~^^~~ > > Jefersea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2004 Report Share Posted June 25, 2004 Carol, I wish you luck on your appeal. But maybe there is something to the reason there is obesity written all over you papers. Have you given any thought to aggressive treatment for you obesity? I don't know how obese you are but I can tell you from my point of view as an obese person. At 20 lbs loss of weight can make a good bit of difference in pain levels and mobility. I choose to undergo weight loss surgery as did Tess. I am sure she can add her input as she is loosing weight what a difference it is making is her quality of life. I have lost 22 lbs and I have so much more energy, far less pain and I am off Methotrexate, prednisone and prozac. I have no need for those meds anymore. I am also walking up to 2 miles on my good days!! Its like I have a whole new life these days and as time is passing it is getting better and better. toni In a message dated 6/25/2004 8:34:24 AM Central Daylight Time, writes: Problem is my original doctor was a sceptic, and all over the appeal forms are Obesity, Obesity, Obesity. My Consultant's letter on the other hand was in my favour, but the Tribunal appears to have ignored it, and that is what we are fighting the appeal on. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2004 Report Share Posted June 25, 2004 I believe that it is only used by Duke in this study. Re: [ ] Journal > Jefersea, > > I just entered into an RA study at Duke University to study our reaction to pain on a daily basis and how different techniques we use affects our pain and daily moods. Right now, I'm in the beginning stages, so I have to feel at 3 pages of questions for one month on my pain levels and emotional status. It takes me 5 minutes at night, and I think the form is very thorough. I can scan those, and if anyone would like a copy emailed to them, I will send it out. Just send me your email address. I saw my rhuemy yesterday, and he has asked that I maintain a copy of these for myself so that he can review them as well. I'm just thrilled that he cares that much! > > ~lori~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2004 Report Share Posted June 25, 2004 Hi Toni - congratulations on your weight loss:-) Gosh you and Tess are a lot braver than me, 'going under the knife'!! I totally agree with the doctor, I was very obese. My top weight was over 19 stone (266lbs hope my maths is right), and 5'2 " tall. Up until 3 weeks ago, I had lost 5 stone or 70lbs, and going by my clothes, I have lost some more. I will know how much next Friday, when I visit my new doctor, and get weighed then. Unfortunately, even though I feel more confident, and love all the new clothes, shoes, bags LOL I still seem to be in as much pain, and unable to get around. Could be the Fibromyalgia rather than the arthritis. I am very envious of you, walking 2 miles, I used to love walking also driving, 2 of the things I most miss doing. Hopefully when I lose all my extra weight things will improve, just as things have improved for you. Thankyou so much for your encouragement, it is much appreciated. Carole ~~~~~ > > Carol, > > I wish you luck on your appeal. But maybe there is something to the reason > there is obesity written all over you papers. Have you given any thought to > aggressive treatment for you obesity? I don't know how obese you are but I can > tell you from my point of view as an obese person. At 20 lbs loss of weight > can make a good bit of difference in pain levels and mobility. I choose to > undergo weight loss surgery as did Tess. I am sure she can add her input as she > is loosing weight what a difference it is making is her quality of life. > > I have lost 22 lbs and I have so much more energy, far less pain and I am off > Methotrexate, prednisone and prozac. I have no need for those meds anymore. > I am also walking up to 2 miles on my good days!! Its like I have a whole > new life these days and as time is passing it is getting better and better. > > toni > > > > In a message dated 6/25/2004 8:34:24 AM Central Daylight Time, > writes: > > Problem is my original doctor was a sceptic, and all over the appeal > forms are Obesity, Obesity, Obesity. My Consultant's letter on the > other hand was in my favour, but the Tribunal appears to have > ignored it, and that is what we are fighting the appeal on. > > > > > > > Quote Link to comment Share on other sites More sharing options...
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