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tlh4464 posted:
I just found this community while looking at information on RA nodules. I was diagnosed in February 2008 after many years of symptoms. The pain is terrible and sometimes I think I just want to throw all the meds away. At first all my friends were very supportive but now I don't hear from them hardly at all. They don't understand. I have gotten very depressed and am now taking meds for that. It would be so nice to have someone to talk with who understands.
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NurlivingwithRA responded:
Hi

I totally understand, I am willing to be there for you!

Nur
 
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Byroney_WebMD_Staff responded:
Dear tlh4464,

Welcome! I'm glad you found us.

Unfortunately, many people have trouble with friends and family understanding RA. While brochures and literature can sometimes help educate, other people go on to find new friends who do understand, and perhaps even some who have RA themselves.

Until some other folks here jump in and reply, let me offer a few links that may help:

How Well Are You Managing Your RA? (assessment)

Life With RA Guide

RA and Keeping a Positive Outlook

RA Pain

Pain Clinics

I would also suggest you consider talking with a counselor who understand chronic pain, and perhaps a referral to a pain management center.

Best wishes,

Byroney
 
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karento responded:
I am new too, not only to this community but to the reality of having RA. I was diagnosed in June of this year. Man has it been hard. The pain and sfiffness has really been hard then getting use to taking so much medicine. I know how you feel about your friends. My family has tried to be understanding yet it seems that they think it's not as bad. I did have to stop working several years ago due to fatique, no sleep painful joints and many other symtoms but i was told it was fibromyalgia until recently when i woke up and could not move or bend by fingers so i went to the doctor and here we are. I have gained so much from this site.
It is so good to know I am not alone.
 
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karentcutillo replied to karento's response:
I am new to this board, but was diagnosed 2 years ago. My best friend can't understand me and what's going on and thinks I take too much medicine even though she went online to look it up. I am now permanently disabled but that was because I have spinal cord damage and had 4 operations on my neck. It was after than that I was diagnosed with RA, trust me - the pain and stiffness get better once you are given the proper meds. It took 4 meds for me to end up on Humira and methotrexate. I also have severe osteoporosis and have to take an injection of Forteo every day. It started for me in my knees, ankles and hands. I have found that if I take a good long walk, with good sneakers on, it really helps my knees and ankles. I take my dog who also has arthitis in his hips - so we're both getting better. But the pain in my hands has come back and I had to start a medrol pack which has made me tired. Have lots of stress in my relationship which only makes my disease worse. You are not alone and that's why I signed up today - because I need to talk to other people with the disease. Hope you feel better and I'm glad your're here so I know I'm not alone/
 
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Snazzyactor replied to karentcutillo's response:
You are definitely not alone! I just recently joined this group and it has become my lifeline from debilitating depression. Knowing there are people who truly understand has raised my spirits. I find myself checking the discussions in the middle of the night when I can't sleep. I feel I've found friends and then eventually I can get back to sleep. I was diagnosed in Jan with RA but the docs feel that I've probably had it for many years. I've had six operations on my spine and have 95% of my spine rebuilt with rods, bolts, and a cage. It's a miracle that I can walk! When I was recovering from surgery and in all kinds of braces etc, I had a lot of sympathy from friends and family. Now that you can't "see" the pain, everyone says things like, "isn't it wonderful you are doing so well now!"
I truly pray that the RA organization finds a way to rename this disease so that people are more understanding. I think that taking the "arthritis" out of the equation would make a world of difference in most people's understanding.


By the way, I have two cats who sleep with me. (and you are wondering what this has to do with anything).......but in the morning, the petting helps my hands and fingers to loosen up. It's amazing therapy! They also seem to sense where I'm hurting the most and they lay on that area and purr. Body heat with built in vibration feels great on my shoulders in the morning! I recommend cat therapy. LOL


I'm available most of the time for anyone who needs to talk.
 
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Lissah47 responded:
OOOOOHHHHHH.....I understand you so much. It seems like my friends see me walk/function and APPEAR to be just fine so they think I am great...don't wear my heart on my sleeve...but...mornings are miserable and very slow to start because of the stiffness....my whole life has been affected by this disease....If I didn't take my meds I would not be able to function at all. Sometimes I feel like I am damned if I take them (due to the long term side effects) and damned if I don't (as I said earlier) Please, keep your chin up and know there are others who feel similar to you...you are NOT alone.


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