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Stephanie,
Thanks for doing this. I know you will make a difference. You have to me already: I’m more determined than ever. :heart:
Have you had hair loss
yes a lot, and several times over. at this time, most has come back. but it came back curly.
Yes but only started 2 years after being on Methotrexate! They discovered I had Osteoporosis and Iron deficient anaemia at the same time though! Rheumatologist not sympathetic at all
All I can say is, wow. Glad you’re here to share your story. Hope things will get under much better control with new meds and that you never have to wait so long for proper treatment from a rheumy or a pulmo again. Here’s a support site for folks with interstitial lung diseases, of which autoimmuners can get, although I don’t know if you have only nodules, or restrictive or obstructive disease. There are many lung problems that can arise in RA as well as lupus and other diseases. Some are progressive, some aren’t so much but always best to keep watch over them.
Huff-n-Puff www. huff-n-puff.net
Stepanie, Thank you for sharing your story. It had me in tears a bit to think you had to suffer all this and permanent damage too. I know your story will help others. For me, it confirms my chemical sensitivities are related to RA. I know people had pegged me “high maintenance” for this. I had other early signs that were considered this also. Take care
I read your story with great interest Steph, I am so sorry you had to live like that and go through this hell, can I ask why it took 12 months to get into see a RA Dr?? I mean, why a year just to get an app? Thanks again for sharing
Viesta: In Canada they have socialized health care which means that everyone who is a citizen gets health care. Being that, even to have a urgent surgery you can wait weeks and weeks because there are more people than appts available at any dr office or hospital. It is nice that everyone has health care but it is hard when people like Stephanie are suffering for a year straight before they can get in to see a doctor. My friend said the same thing, she lives in Canada and when she needed an urgent surgery when she had an infection in her kidney’s, she was on a waiting list and expected to not have surgery for four to six weeks so her husband drove her from Canada to the US where she could have the surgery immediately.
Chelsea, thanks for the site info for interstatial lung disease. I will check it out. Mine is obstructive. It took forever to figure out as I “fit the box” for COPD but have never smoked a day in my life. Never even tried it. And the fact that I’m only in my 30’s didn’t help either.
Rhonda : I’m so sorry you are suffering with chemical sensitivities too. In some ways, that is harder to deal with than the RA itself because it is even less understood. I react to everything. So much so that I had to give up my job as a manager with the Canadian Federal Government to take a demotion within the same Department so that I can work from home. For me, avoiding exposure to what I react to means that I have to stay away from pretty much everything. It’s maddening and very isolating.
On my blog, I also talk about my MCS and how I have had to adapt, what has worked and what hasn’t. Check it out. I hope some of my experiences will help you get through it. And if you ever need advice from someone who has been there or just a place to vent, feel free to contact me anytime!
Viesta, I’m in Canada and some specialists have long wait lists. But I’m fine with as I’d never be able to afford my care if it weren’t for the fact that we have Health care coverage here. And the Rheumatologist I got is fantastic. He spends as much time talking to you as you need. Last time he spent over an hour with me making sure I was ok with the treatment route and going over in detail my questions. I’m so glad I waited for him. I could have gotten into another one sooner but he spends no time with his patients. My mom went to see him and she saw him once for 5 mins, and he didn’t even examine her. She is now on the list to see mine.
Stephanie,
Wow! Thank you so much for sharing your story. The things you’ve been through are awful. I’m so glad you finally have a good doctor who is giving you the treatment you need.
You are an inspiration; your strength, endurance, and never giving up. It’s very affirming for other people with various manifestations of RA. Your story and others’ experiences help us all become better informed and more assured when we describe symptoms to our docs.
Thank you!
I am so sorry you had to wait so long Steph- that was just wrong, but thank god you are happy with the doctor you got into, I am in Canada too, I see my rheumatologist here in Alberta, longest we ever had to wait was a month…. blessings to you, be well~ Viesta
Viesta, I’m in Ottawa. Unlike Alberta fantastic system, you may have heard about Ontario’s difficulties with Dr shortages, long waiting lists etc. My mom used to live in Edmonton and always raved about Alberta’s health system. She just recently moved back to Ottawa and was shocked about how different the two systems were. But ether way, at least it’s better than nothing right?
Everyone, thank you for your kind words. Some days I don’t feel very strong and I’m not so sure I’m all that inspirational but it is so kind of so many to say. I can’t have kids so I have no one to teach my life lessons to. If I’ve helped any of you in at least a small way, I’m thrilled.
Anyone know if there is a linkage between RA and infertility? Not that it would help us as DH is infertile too but at least his has a cause. Mine has been listed as unexplained. Is this another thing I can add to my list of RA complications?
Stephanie, I have also wondered about any connection between fertility or more like fertility problems and arthritis. Thank you for sharing your story, you are very brave to endure what you have endured. I also was diagnosed with Juvenille Arthritis but then they thought it was reactive arthritis, but when you are diagnosed in preschool or kindergarten it is difficult, the drs don’t know what to do. I think treatment has come a long way since we were children. I pray the children who have the symptoms we did get much better treatment and much quicker treatment than we did. Hang in there, we all are rooting for you!
I am sorry for your long waits – that is just wrong- no one where else in Canada has long wait list like that, I just dont understand on only Ontario, *shrugs*
Stephanie, Thank-You for sharing your story and being so brave, you are truly a WARRIOR! It angers me that you had to go through what you did but, you are stronger for the experience. If I had not read your story I would still be thinking that my hoarseness and constantly losing my voice was symptomatic of years of smoking despite the fact that I quit over 3years ago and this just started a year or so ago. I had asthma as an infant and thought that was why I could hardly breathe now, it had come back. Now I KNOW that I need bring up these issues with my Rheumatologist ASAP. Thank-You again for braving the icy waters for the rest of us. God’s Blessings!
Alice, did you see the three part series on cricoarytnenoid arthritis? It includes more info about Steph & how I found out about her CA!
One thing I have in common with a lot of others is that the doctor didn’t recognize I had RA. I went complaining of pain in my feet and hands. The doctor gave me aspirin. Of course, it didn’t work and I just got worse. My hands swelled up so bad I couldn’t open a door, hold a cup of coffee or even unzip my pants.
I went back and he told me that since the blood work didn’t show anything it had to be in my head. I got angry and yelled at him and he brought in another doctor who thought I looked like I might have R.A.
The first doctor argued that the blood work didn’t show that. But he agreed to send me to a Rheumatologist.
I walked into the Rheumatologist’s office and he took one look at me and told me I had RA.
He put me on Predisone, methotrexate, and salsalate. I recovered enough to continue work till this past year when the fatigue, the depression and the all too real pain has caused me to seek disability.
Charles,
Your story is one I hear frequently. I’m hoping we will see changes in our lifetimes.
I wonder whether yelling at the doc would have had the same effect if you were a woman. Just saying…
Wow
I have been suffering probably 40+ years.
However this pass September 2009 different things were happening. As everyone else has said one thing at a time, therefore unable to connect the dots. January 2010 everything got worse. I went to my doctor, with many questions? Asking why is when I come for a physical I always have to come back because I have weird problems. When the numbness and pain in my left hand would not go away he had me in to see a Rheumatologist within 2 days. I live in Northern Ontario we had to drive south for the appointment. The doctor was wonderful spent alot of time talking to me. Had me do some extra blood tests and then started the Mtx. The fingers on my left hand are still numb, seem to improve daily all my other problems have disappeared(for now). There is a strong family history of RA.
I feel sorry that so many people suffer especially the younger people. I wonder if the doctors really understand the pain that you have, or do they think you are just imaging things.
I can relate to your onset story, Stephanie. Luckily I had peristent parents also. And yes, the treatment in those days was pretty limited. Luckily I’ve had waning periods ==I think they used the word remission once–but my rheumatologist always kept an eye on me. Sorry you had such a tough time getting help. Thanks for sharing your story for others.
I think these stories are great. Those of us that have RA and have suffered through the pain and fatigue and also treatment with different drugs, it’s great know that your not alone.
I just wish doctors were more compassionate and believing when your sharing symptons and concerns with them.
I have a RA Dr. that is strictly a pill pusher. She dismisses concerns like dizziness. It couldn’t possibly be caused by medication. I’ve never had dizziness like I experience until I went on medication.
I started with Methetrexate then Plaqunequil and now I’m on Arava. I still suffer from dizziness but not as bad as on the two other drugs.
Thanks for the stories. They encourage me and also great information. It’s not all in my head. Thanks again.
Good to hear from you Frances. Its not in your head. 🙂
Every comment on any of the stories or comments on these pages should be dated…for reasons of research, and also because the treatments, research, etc. on RA changes constantly.
I don’t see anything on these pages that seems to have occurred in 2013, for example. How often is this website updated?