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SureHope posted:
Hello, I'm new to this community. Sorry but this might get long. I recently have had numerous tests done in the attempt to find a diagnosis, so far my RA and ANA are both overwhelmingly positive. I have been on the quest to figure out what was wrong with me for some time now, more than 5 years. I'm now 25 years old and feel like I'm 80.

Interestingly I came up with a diagnosis over 4 years ago, I thought it was something auto-immune, saw a specialist but nothing came back conclusive. No one believed me at the time, but I guess I was right.

I have always struggled with my weight, but recenlty I have lost a significant amount, nearly 70lbs and I am finally at a healthy weight and have been consistently for 2 years. I assumed that I would feel better than I ever had in my whole life, but sadly I was mistaken.

I thought that maybe my troubles would be over, I would finally have my mother's approval (an arobics instructor and health expert)...but no, now I'm a 25 year old involent who can barely move. Sure I look great, but can't walk across a room or up and down stairs without struggling.

The worst thing is that I knew something was wrong, I told my family about the pain I was experiencing and their response was, "you don't know what real pain feels like...it's all emotional with you, its something psychological." Not to mention the occasionaly wise crack about how pathetic I am and if I just listened to them my whole life and exercised more, I wouldn't be in this situation. Thanks for the support! (sarcasm)

I'm looking for as much information as I can and as much advice as I can, to find a way to deal with this the right way, and I hope to find support I may not be able to get otherwise. I'd appreciate any help any one might be able to provide.

~SureHope
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Caprice_WebMD_Staff responded:
Hi SureHope and welcome here.

It may take a while for responses to come as we approach the long weekend but I hope you'll keep checking back in here.
We must let go of the life we have planned, so as to accept the one that is waiting for us. ~Joseph Campbell
 
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sfonseca7 responded:
State of mind is important when faced with RA, Most people don't understand the pain that is RA because most RA patients "Look Well" (some don't). Support from family is iomportant to your state of mind. Since that support isn't coming from your family it's up to you to over come that fact by going for countceling to learn how to cope with and overcome this. We in the RA Community understand and are here for you. Good luck to you. You are in my thoughts.
 
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SureHope replied to sfonseca7's response:
Thanks sfonseca7! I appreciate your responce. I will keep these things in mind and do my best to build a strong support system.
 
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sfonseca7 replied to SureHope's response:
since support is important we must be there for each other. i have good days and sure enjoy them. hope you have good days too. you are not alone.
 
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mike201 responded:
Surehope

Perhaps read a useful book called Conquering Arthritis by Barbara Allan to investigate your diet. Otherwise try these ideas. Cheers, Mike

Did you know that the internet provides opportunities to:
? List your drugs and determine drug-to-drug interactions (http://www.mediguard.org and http://www.nps.org )
? Read the latest published medical articles on a particular condition or drug protocol (http://www.intelihealth.com , http://www.thelancet.com/ , http://www.biomedcentral.com/ and (http://www.uptodate.com )
? Consult with a doctor via the internet for a second opinion (http://eclevelandclinic.org/myConsultHome.jsp )
? Join in discussion with others suffering from a similar condition (http://www.patientslikeme.com and http://e-patients.net/ )
? Understand you blood results (http://www.labtestsonline.org.au )
? Map the likely progression of a condition over time and assess its severity (http://www.curetogether.com/ )
? Understand how your body works (http://www.visiblebody.com/ )
Specialised sites for particular conditions such as rheumatoid arthritis (http://rawarrior.com , http://www.webmd.com/rheumatoid-arthritis/default2.htm and www.bjcconnectedcare.com ) or for cancer (http://acor.org/ )
? Overall health references and data (http://www.webmd.com/ )
? Participatory Medicine is a cooperative model of health care that encourages and expects active involvement by all connected parties (patients, caregivers, healthcare professionals, etc.) as integral to the full continuum of care." (http://participatorymedicine.org/ ) .
? www.arthritistoday.org/
? www.myrafitkit.com/
? http://www.arthritistoday.org/daily-living/do-it-easier/index.php
iPad and iPhone Tools
App Store. Find these by typing the title in the search window.
? Living Medical Textbook -Rheumatoid Rrthritis, latest scientific research
? WebMD, a health and fitness application
? NPS MedicineWise, keeping track of drugs, times and dosage
? Monitoring your chronic pain via Chronica for the iPad (http://www.chronica.biz/ )
 
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SureHope replied to mike201's response:
Thanks Mike!
 
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stillwalkin responded:
isn't a relief to know you don't have to beat yourself up mentally anymore? go ahead and get help for your RA, but don't forget to find friends that believe you. I was luckier than you, my mother always was supportive, but I did have relatives that thought (despite diagnosis etc.) I was exaggerating or making it up. People who have never been really sick need to have a super dose of empathy to even start to "get it." The sad thing is they usually "get it" eventually when they too are sick and in pain. Forgive them and move forward. By the way, don't give up on exercise- get the symptoms under control (can take some time) and then find something low impact (NOT aerobics!). Stretch, massage, swimming in WARM water, whatever works!
 
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SureHope replied to stillwalkin's response:
Thanks that was some important thoughts I needed to hear! or in this case read... hehe

Anyway I'm not giving up on exercise, I've been investigating lots of low impact things for me to do, that I actually like to do. I found a neat book with some goal sheets and progression models to show how every little exercise can help. I haven't had the time to get too serious about my routine yet just due to time constraints but I will. I know it means my life!

Thanks and I keep those types of exercises in mind!
~Surehope
 
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stillwalkin replied to SureHope's response:
It's always a work in progress! At the moment the new thing I am trying is tai chi- I need to wear a knee brace for it, but otherwise not too stressful on the joints. I used to hike (no backpack due to shoulder issues) but have to cut back on miles due to hip problems, so now I ride instead. It gets me into the backcountry but less impact. I get a massage every week from a therapist I trust - definitely shop around for a good one. Stretching every morning and evening. I like "the miracle ball" exercises. Of course I also take medicine- on Remicade and various NSAIDS. the biggest thing is learning to listen to your body without letting the pain push you around. Good Luck and take care of yourself!
 
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SureHope replied to stillwalkin's response:
I currently have difficulty getting down on the floor and back up again without a use of a chair for assistance. I hate that I have to do that, but maybe as I get stronger I won't have to anymore I hope that is. It's hard for me to find exercises that doesn't involve getting up and down off the floor tho...ugh
 
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BJ1989 responded:
Hi Surehope,
I'm so sorry for the lack of support your getting from your family and I bookmarked your page because I've been looking for a good support site myself. Like yourself, my first symptoms of RA started when I was 21 years old and was dxt in around 1982--yes, I've had this for a long time and I'm 51 years old now, but not old enough to throw in the towel, lol. The site is called; patients like me and here is the link;
http://www.patientslikeme.com/profile
I tried to get to the main page, but kept ending up on my profile page---go from there and I think you'll like this site. There are quite a few forums for different issues and Im on the 'autoimmune' one and 'bones and muscles' forum.
Honey, I just couldn't stand the thought that your so alone and I want to help any way I can!! I think you will like this site, I sure do--I joined a week ago and so far, it's pretty cool.
I hope you don't I'm being pushy, guess I just have a caring heart and I remember what I went through when I was young, having RA and not looking sick. For the first year, all my lab work came back negative and that was the worst!!
You've got to take of You darlin, nobody else can and just try and let any snide or mean comments roll off you.
My name on 'plm' is "creaky425" and I'd be happy to hand out advice and be your cyber friend!!
Take care!!
Bobbi
 
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BJ1989 responded:
nohope-----
PS: I do love 'webmd' and come here often. I wasn't trying to get you off this site, I use it all the time. I just wanted to give you all the support I think you need darlin!! Webmd is a Great source of info and I've been using this site for years now.

PSS--webmd moderators: Please know i'm not trying to get Anyone away from this wonderful site--not my intention at all!! I just saw a person in need and thought I would add another source for support, so no worries, yea?
 
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SureHope replied to BJ1989's response:
Hey thanks for taking an interest in me. I'm working on building a support system, some other friends have told me that maybe this is just how my family is dealing with it, that this is just how they are processing it. That they don't want to see me going thru something like this and they don't want me to be in pain. And they just don't know what to do or say to make it better. I think it may take some time but I know they love me so they'll get there...eventually!

Talk more soon!
 
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An_246005 responded:
Oh gosh Sure Hope. We've been on a very similar road. Only thing is...well 2 things. One..my RA tests have come back negative but the docs say they can be negative for years, doesn't mean I don't have it as i certainly have all the symptoms. He is a hand and arm surgeon and has operated on me 4 times and he feels I have RA along with my primary care doc. Second, In January, after months of sever pain, loss of control in my right leg, severe neck and shoulder pain and loss of fine motor skills, they did an MRI and concluded I had 4 discs severely compressing my spinal cord in my cervical spine. This is after a year and a half of complaining and suffering. The disc between c2 and c3 had ruptured and they could actually see spinal fluid leaking on the MRI. I have severe spinal lordosis. I was told at the MRI reading that I shouldnt' even be walking around. This is after 2 really bad falls. one resulted in a concussion and the other in fx ribs, a broken foot and multiple painful bruising. So I was put on bedrest and sheduled for a surgeon that day thanks to my pain management doc and my surgeon. The sent me to a surgeon who specializes in reconstructive spinal surgery. I had 2 discs removed, 2 shaved down, my neck put back the way its supposed to be, I have 6 screws and 2 plates holding in synthetic bone with metal coated wire wired throughout the area. They went in through my throat. Its been 3 months and I do not have much improvement at all yet, as a matter of fact, the pain is just as severe as ever. I don't know where the neck pain ends and the arthritis begins since the effected parts are bothered by both the neck and the RA. My family did the same thing to me. My husband and I fought terrible when I got put on pain management....he tells me if I would just exercise and take whirlpool baths i wouldn't need all the meds I'm on. The steroids gave me diabetes and the the constant severe pain made me hypertensive.I was in the hospital already twice this year on the verge of a stroke with blood pressure through the roof. I was in a week both times in the stroke ward. I'm only 48. I wat to live to be at least 90. i dont smoke, occasionally drink ( not even that anymore because of the meds, and i just lost 60 pounds and I'm going to keep going strong on that. I have not even been able to excercise, as per docs orders. not yet anyway.. I just count calories and its been working. 60 pounds since January 6th..the first time i got admitted to the hospital....i really thought i was dying!. So i put myself on a strict 1000 calorie a day diet, gave up sugar, sodium, red meat, soda and anything else that is really bad. I will have a piece of birthday cake, or if we are out somewhere for dinner, i may have something off my normal list but for the large majority of the time I am eating healthy...yogurt, nuts, fruit, salad, tuna, chicken, tilapia, pork, anything healthy. Love raw veggies, carrots, cauliflower, broccoli, green beans. Its working! But , like you, i can barely move...the weight loss hasn't helped with that at all and i really thought it would, at least that's what i've been getting told my entire life. I have 40 more pounds to go before im at my goal, I hope it helps but am afraid it wont. So anyway...if you want someone to talk to....add me to facebook....I'm facebook.com/irishree or just answer me on here. Best of luck with everything, we can go on our RA discovery journey together if you'd like. just let me know!
have a good day! ~ Marie


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