A pacemaker-like chip implant may be the future treatment for rheumatoid arthritis. Starting in August, the Academic Medical Centre (AMC) in Amsterdam will study whether surgically implanting an electrical device in a patient’s neck can inhibit the inflammation of joints, a common side-effect of the disease.
“This is a whole new way of treating rheumatoid arthritis,” says study supervisor and AMC Professor of Rheumatology Paul-Peter Tak.
Real Profiles of Rheumatoid ArthritisPhotos © Marissa Hormell
Marissa Mullins Hormell
Kennerdell, Pennsylvania, United States
How long have you lived with RA?
14 years. I was diagnosed at 2 with JRA.
What advice would you give to someone who has just been diagnosed with RA?
Don’t be afraid to ask your doctor/rheumatologist questions. Find local or online support groups that help with dealing with pain/depression. Check sites like arthritis.org or, of course, rheumatoidarthritisguy.com for facts and other people who have RA. No one understands better than they do! RA tests your courage and emotional strength in many ways, so don’t give up on yourself. This isn’t the end of a long wonderful life and you are the strongest you can be at this time.
Do you use any mobility aids?
No aids yet!
How has living with RA helped to improve your life?
Living with RA has helped me realize that I CAN do things I’ve always wanted to do. I still swim, hang out with friends, and go on vacation. Also, some days I feel like I am stronger because I can cope with my arthritis in a mature way. Some people wouldn’t think that RA can help you in a positive way, but it really can.
Do you have any visible signs of RA?
I have purple blotches on my legs and dark bags under my eyes. I also occasionally have visible swelling of my knees and fingers.
Can you please describe some of your favorite coping strategies for living with RA?
When it comes to feelings and mood and my RA, it’s like a rollercoaster. Some days I feel great about myself but other days I feel as if nothing is going right and I am always in pain. The #1 thing that always can help me through a depression stage is music. Usually I’ll listen to the kind of music to fit my mood. Like if I am angry, I’ll listen to loud rock music. Or, if I’m sad or depressed about my pain, I’ll listen to inspirational music. I remember when I was going through a tough time a while ago with school and everything was so messed up it seemed, and the only song I listened to for 3 days straight was “No Boundaries” by Kris Allen. It really helped me realize that I could make it through the bad days. Music really helps me cope with a lot of things, not just my arthritis pain. I’m glad to have such an awesome therapy method.
Can you please describe your current medical (traditional and alternative) treatments?
Right now for my RA I am not on any medications. I was put on Methotrexate and Folic Acid a couple of years ago for my RA. I was doing exceptionally well and my arthritis was also doing great, so I was taken off. Now though, since the pain has returned, we concluded that I was just in a remission. As for my pain, I have another condition called RND, which has to do with my nerves. Most of the pain is in my nerves and muscles now, which I only take OTC drugs for that pain.
Is there anything else about yourself that you would like to share?
I am a huge animal lover. I have 3 cats, a bunny, and my grandparents have the cutest dog. All of my life I have been around animals and have always had a knack for getting them to trust me. Hopefully someday I can have a job that deals with animals along with my dream of becoming a journalist. I can also be found on Facebook.
“There is one best place to bury a dog. If you bury him in this spot, he will come to you when you call – come to you over the grim, dim frontier of death, and down the well-remembered path, and to your side again. And though you call a dozen living dogs to heel, they shall not growl at him, nor resent his coming, for he belongs there. People may scoff at you, who see no lightest blade of grass bent by his footfall, who hear no whimper, people who may never really have had a dog. Smile at them, for you shall know something that is hidden from them, and which is well worth the knowing. The one best place to bury a good dog is in the heart of his master.” -Ben Hur Lampman
June 2, 1998 – July 17, 2011
Lily was the first dog that I lived with during my adult life. She was a Cairn Terrier, and I got her as a puppy. She was my friend, family member, and companion. I often called her my “little assistant”; whenever I was working at my desk, she always wanted to sit on a chair next to me. I got Lily when I was a graduate student at Harvard working on my thesis. She learned to climb on the steps of the university’s main library, and could often be seen running around Harvard Yard with the many other dogs who went there to play. After graduating, she and I went to conquer the hills of San Francisco, and during the last few years we have been living in South America.
When rheumatoid arthritis entered my life and I started to spend a lot of time in bed, Lily was always by my side. She always seemed to know exactly how I was feeling, and a couple of years later started having arthritis problems of her own, especially in her hips. On many days people could look at her and figure out how I was doing, or they could look at me and figure out how she was doing. Going on regular walks continued to be more of a challenge for the both of us, but we continued to move forward the best we could.
When Lily had her 13th birthday a little over a month ago, we celebrated with the usual homemade doggie treats. And even though she continued to do well, her health had been on a decline over the past three months. When she woke up yesterday, she did not have the use of her rear legs. We immediately took her to the vet, who informed us that her heart was already failing. At this point, our only real option was to peacefully put her to sleep.
We asked for one more day with her. Yesterday, we went on our usual walk–although she had to be carried the entire way. (I was grateful that I’ve recently had some really good days in regards to my RA, and that I was both able to walk and carry her. That meant the world to me.) We cast her paw prints in a memorial stepping stone, and spent the rest of the day together. She drank lots of water, and ate some steak that was prepared especially for her. For one last time, we went to sleep together…and woke up together.
A little over an hour ago, in the comfort of our living room, we said our final farewells and had the vet put her to sleep. Just a few minutes ago, the funeral home came by to pick up Lily. We will receive her ashes later today. She will be missed by all of those in her lives, including her two younger “sibling” dogs (Alva – 9 year old Terrier/Chihuahua and Oliver – 3 year old Pug), but she will remain in our memories and in our hearts. She was indeed a “little assistant”, and helped me more than anyone will ever be able to know.
I love you Lily.
Living With RA And Fibromyalgia
I can’t really remember when I first started having pain. The pain in my lower back has been plaguing me for many years. I’ve had problems with my joints before, but usually only when it’s really cold outside. For that, I would just wrap them with an ace bandage and be done with it.
Read More: http://kmdrajournal.blogspot.com/
An Unguided Missile
I support my family with my QA job. I have a crazy commute and never get enough rest. I write this blog to help me keep my sanity. Lack of rest is compounded by the fact that I’ve been diagnosed with Psoriatic Arthritis and Hypermobility Syndrome. These disorders play a huge role in my life and on my blog. I’m loud and pushy about awareness, especially of the autoimmune spectrum. Be prepared for forceful posts demanding action.
Read More: http://nonavigation.blogspot.com/
Peace Love Wool
I’m a woman in my late 20′s. A knitter, wife, mother of two, RA patient, and nurse-wannabe who is working as a waitress instead.
Read More: http://peacelovewool.blogspot.com/
“Simplicity, Simplicity, Simplicity.”
My mantra. The best things in life are usually simple. Simple art, simple food, simple pleasures…my dogs, a good porch swing, a perfect sunrise or sunset. Truly a life lesson from living with Chronic Illness.
Read More: http://fatamorgana9.blogspot.com/
Kittycats Litter Tray
On top of that, I have been suffering from chronic pain, on and off for 2yrs. I was diagnosed at the time, with having carpal tunnel syndrome as most of the pain was in my hands. Lately the pain has effected every.single.joint in my body, some days its so bad its a struggle getting dressed in the morning. But I follow that old British War Time Phrase……[Keep Calm And Carry On] I was recently diagnosed as having Rhuematoid Arthritis, I am still, at this time in ‘denial’ stage, but I am learning to live with it.
Read More: http://kittycatslittertray.wordpress.com/about/
Pain With No Gain
Budding Gonzo author, amateur photographer and anxious paranoid who dresses up in movie costumes to scare children for charity. I also have Seronegative Rheumatoid Arthritis and Meniere’s Disease which make for some interesting waking experiences.
Read More: http://brandywhinesra.blogspot.com/
For rheumatologists, the five most influential factors were:
- number of swollen joints
- DAS28 score
- physician global assessment of disease activity
- worsening erosions over the last year
- and RA disease activity now compared to three months ago.
For patients, the 5 most important factors were:
- current level of physical functioning
- motivation to get better
- trust in their rheumatologist
- satisfaction with current DMARDs
- and current number of painful joints.
Conclusion: Factors influencing the decision to escalate care differ between rheumatologists and patients. Better communication between patients and their physicians may improve treatment planning in RA patients with active disease.
Read More: http://onlinelibrary.wiley.com/doi/10.1002…
What factors do you use when when deciding that it’s time to escalate or change your treatment plan?
Thanks to @RheumEpi for originally sharing this link on Twitter.
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