Video Blog: Two Essentials with a Rheumatoid Arthritis Diagnosis
What do you say to someone diagnosed with Rheumatoid Arthritis?
If I could meet to every person diagnosed with Rheumatoid Arthritis, I’d encourage them to
- Expect the best from treatments;
- Read all of their medical records;
- Keep up on research.
I’d also wish for them that they find doctors who listen well!
What else is indispensible with a Rheumatoid Arthritis diagnosis?
Watch this 2 minute video about 2 essential weapons in fighting RA!
Recommended reading
- Newly Diagnosed with Rheumatoid Arthritis Mall Map
- Preventative First Aid for Rheumatoid Arthritis / Autoimmune Disease
- Behind the Scenes Video: Patient at a Social Media Conference
I’d tell them to always explore their limitations. Don’t take someone else’s word for where the limits are. My dad always told me that the least you ask for, is the most you’ll ever get it. It applies here as well as in business. Whatever you are willing to settle for, that’s the most you can expect out of life…
Lastly, I’d say don’t let RA define you. It may be part of you reality but you are so much more than it. Don’t let it take over your identity…
I so love what your dad said. Perfect. It is so easy to let RA define you because it effects every single part of your life. It is so easy to get in that rut and I do it myself. I always say a huge part of RA is the mental part of the game. You can’t let it defeat you mentally. That is the one thing that we have control over. Our bodies and the way they feel day to day is out of our control. I have to work on this area hugely!
great advice! thank you for posting.
Great video, Kelly! I would add, remember to really take your body’s messages seriously. You have probably spent a lot of time pushing through the pain and fatigue. Not being able to push through any more doesn’t make you weak or a failure. It makes you responsive to your body’s individual needs.
That is a wonderful thing to tell someone Lisa. And something only a fellow patient would know.
The medical websites on RA have only provided the most basic information. No site has ever addressed how swelling of the elbow joint can result in muscle swelling just below where the elbow bends on the inner elbow or how tendons can protrude in the bend itself. They have never mentioned that inflammation of the wrist joints can result in pain and swelling in the palm of the hands. I’ve never heard them mention the shooting pain that I feel frequently in my toes or how sometimes, it feels like some of my toes are being pulled out straight while the joint changes in the toes can cause some of them to be pushed so close together than if the toe area of the shoe isn’t wide enough, pressure sores develop between the toes. They don’t mention that too much inflammation can result in circulation being cut off from the affected area. They don’t talk about how inflammation in the back of the heel can result in chronic Achille’s Tendonitis. The list can go on and on. RAwarrior is the only website that tells it like it is. Knowledge is power and now, more than any other time in history, people have to take control over their own medical care. With so many specialties, it is up to the patient to make certain that test results, hospitalizations, etc, are provided to all doctors involved. Thank you, Kelly!
Great vlog thanks for sharing this info!
Fantastic Video Kelly! Perfect !
thanks, guys. I’m hoping we can get this to come up on YouTube for people instead of the “buy my RA cure book” ones…
Very helpful video . I loved it. Kelly do you know of any difference in diagnosing and starting treatment for R.A. from US to Canada ? I have had 2 blood tests 6 months apart with RF positive in both and have been diagnosed with Fibro for the last 6 years – the blood work was just recent as the pain changed and became bi-lateral in 95 % of every joint ( even ) ribs and jaw.However 2 different Rheumatologists seem reluctant to start treatment ( I am on Celebrex 200 x2 daily) and pain killers but because I have no visible swelling they have suggested it is a mental/ emotional issue. Having read so many of the different blogs I am surprised how quickly some have begun treatment . Any thoughts?
Struggling in Canada …
Lisa
Hi Lisa, yes, I do think it’s much quicker to see a specialist here in US or get a 2nd opinion. The key in either place is to find a good dr who listens and sees past expectations. Unfortunately, here in the US, we also have doctors, even rheumatologists, who hear RA clearly described in front of them by a patient and say the same thing as you heard, “it’s a mental/emotional issue.” I hope you can move past any doctor who dismisses your symptoms and get to someone who will provide proper treatment and examinations. The swelling issue may be connected – I can’t say for sure – but many doctors were not properly trained and think swelling is the only proper evidence of RA disease activity – I encourage you to read the 2 swelling posts here and the hundreds of comments – it can be encouraging to hear how many others have similar presentation to yourself – makes one feel less lonely. Unfortunately, swelling usually comes eventually – but damage and disability can come first – so we shouldn’t wait for dramatic swelling to get treatment. I’m sorry you are going through this. https://www.rawarrior.com/rheumatoid-arthritis-swelling-take-two/
https://www.rawarrior.com/rheumatoid-arthritis-swelling-my-confession/
This website has gone a long way in helping me to get my life back. Kelly’s “questions to ask your rheumatologist” are great guidelines to picking the Doctor who is right for YOU. I am one of the lucky ones….my RA is currently well controlled and I live a fairly normal life, but *I* and my doctor are both well aware that all this could change tomorrow. If I might offer a few pieces of advice, they would be:
1. Don’t ever give up….RA is a horrible disease that tries to suck the life out of you, but that next piece of research or drug may be the magic that gives you your life back. Keep praying for the best and hold your head up, there are many of us that DO know what RA is, and are pulling for you. (It amazes me the number of people out there who think RA is osteo-arthritis…..and I take every opportunity to explain the difference to them!)
2. If you have a doctor who is not sympathetic to your RA (i.e. “its all in your head, get over it”) KICK HIM/HER TO THE CURB!!! Find a Rheumatologist who IS sympathetic and KNOWS what they are talking about….even if you have to drive hundreds of miles to get to them. Trust me, I saw several doctors before my RA was diagnosed and properly treated. But thank the Lord, I have a doctor that listens, and then allows me to discuss possible treatments with him, and then we JOINTLY make a decision as to my treatment. Stay involved, do your research, and be an active part of your treatment program.
Finally, hang out here a lot…..Kelly is a crusader who refuses to allow her RA to control her or her mind, and keeps us informed as to what is going on in the medical world with regards to RA. So to her I say “thanks Kelly, your one of my heroine’s”
Thank you, Mark, for such important points. It can be so hard when one is sick to pull oneself up to do the things you say, but this is the only way for us to pursue life – to live as full and long as possible. I have done research about how to address this dismissiveness that seems to pevade rheumatology and I’m working on it from all angles; however, you have made the most important point: Patients themselves must refuse to continue to be treated that way (and recommend good doctors to one another – they are out there).
Hi Kelly. I like what you’re doing with video. Your blog looks great!
I also live in Canada. Socialist medicine is not where it is at. The last rheumatoligist I saw spent four minutes with me and I waited 5 months to see this ‘specialist’. He said he could not do anything for me. This has been happening to me since age 4 off and on (and I am63) Doctors simply do not believe me and it is frustrating.
My salvation has been with alternative medicine. In Toronto I saw a very gifted Chiropractor who used different methods that were not medically approved but they worked. In BC I also saw a Chiropractor who was gifted. He even had me skiing! Unfortunately he moved out of the country. In Alberta I see a Kinesiologist who also performs different treatments than the norm. He said I will never get better but with his treatment the disease can be managed.
The medications all have horrendous side effects including cancer, blindness and the ultimate – death!
I do feel blessed that I was able to find these wonderful medical people who took the time to understand and treat the disease. Western medicine will never work – there is too much money involved with Big Pharma and kickbacks to MD’s
So my advice would be to find a good alternative medicine practitioner
I am so glad I found this site!!! I actually found it in a magazine in a doctor’s office….Anyway, I love reading the articles here.I was diagnosed with RA in 2005…I am very curious to know if any of you have pain on only one side sometimes? It seems to me that my right side, (hand, elbow, feet, knee, shoulder and knee) seems to hurt more than my left side..I am also having a lot of neck pain mainly on my left side which goes all the way up into my ear…I am tired all the time..and rarely ever feel good…I also wanted to know if it is possible to have some of these videos with closed caption…On top of having RA, I am nearly deaf, which also makes it very hard to communicate with my dr sometimes..I am very frustrated, and there is no RA in this area, so I am depending on my family doctor to treat me…He gave me 3 shots in my right knee last week, and my knee is still swollen very bad…I hate to complain about the symptoms all the time and being hearing impaired does not work well when communicating with the dr. Thank you so much….
I’m reading up on the embedding captions on youtube now Lucy. I’ll see how it works. I wonder if there is a program to also translate captions for videos that don’t have them embedded? I’m looking for both. Two of my children are almost deaf and I understand why this would help!!
Many people have symptoms that are worse on one side with this disease. It sounds like your family dr is very compassionate, but he might not be able to prescribe all the treatments you need. There is a shortage of rheum drs and it might be hard to find yourself a good one but I hope you can! Even if you have to travel every few months to another city.
Kelly, Thank you so much for the reply!! And, thank you for understanding the hearing problem!! I live in Pearl River County, MS…I see that you are from Jackson…Do you know of any good Rheum. Drs in this area? I don’t mind traveling if I have to..Thanks again, Lucy
I’m not from Jackson, but my daughter went to college there. I don’t know a dr there, but here are 2 posts with some drs listed in the comments pages. Good luck to you!!
https://www.rawarrior.com/the-appointment-with-doctor-perv/
https://www.rawarrior.com/santa-bring-her-a-rheumatologist-please/
Hi – would like to continue reading and learning from yr comments
Have got the disease – sometimes great other times not / but thanks for yr information to research further
Sue
Australia
Hi Sue, there are hundreds of pages and you’re welcome to keep reading. If you want new posts emailed to you, there’s a request form near the top RIGHT of the page.
Thank you, Kelly. I’m newly diagnosed and it’s all a mystery to me. I’m so glad I found this website.
I am so scared. New to this. Got diagnosed November 2015. I was put on methotrexate and prednisone , it worked for awhile. Not so much now. Devastated.
Thank God I have found this website!
I have just been diagnosed with Rheumatoid Arthritis and I have so many questions about this rotten disease! I am taking methotrexate by injection and I am finding that I am having some side effects after having the injection and for a few days after….towards the end of the week it is getting easier but then I have another injection and the side effects start again. Nausea, extreme exhaustion, aching limbs (like the flue) and freezing cold. It takes about 3 days for the symptoms to ease off. Is this common with this drug? I do suffer with multiple chemical sensativities as well as fibromyalgia. I had been on
prednisolone for a long time as I have bronchiectisis and it wasn’t until I came off the prednisolone that my RA symptoms appeared (hands/wrists/feet and ankles) up until the time I came off the prednisolone my blood tests were negative. So, all of this has happened since coming off prednisolone. I cannot believe that it literally seem to blow up over night. I am a bit
apprehensive about the side effects I am getting from the methotrexate. Do these side effects
go away the longer that I am on this drug? Or will I just have to deal with these side effects??