Comments on: The Four Courses of Rheumatoid Arthritis, part 1

By: Kelly Young

Kelly Young — Sat, 21 Apr 2012 12:56:20 +0000

Welcome, Linda. Good luck with the Plaquenil today. I have the same hope for all of us and we are working every day for just what you said!!

By: Linda Gail

Linda Gail — Fri, 20 Apr 2012 22:27:17 +0000

I had an episode with tendonitis in my hands in 1997, after moving furniture. It gradually subsided over a year and a half. Then I had a period of extreme fatigue in 1998, right after I finished remodeling a house. It resolved after about 6 months. Soon after, I had extreme pain in both feet, the balls of them, and was diagnosed with neuromas in both of them by a quite arrogant podiatrist I never liked. After a year of NSAIDS, I agreed to surgeries – he did one on my right foot and I opted out of the second, as nothing changed. He told me the a new neuroma was created by the surgery. After another year or so, the pain left, and I assumed I learned to walk differently.
Fast forward to 2004, when I developed a chronic cough after a flu – 7 years later I finally was diagnosed correctly with a hiatal hernia that caused me to breathe acid for all those years. Throat damage, vocal cords burned, and my lungs took a beating. I had the surgery mid-Jan. of this year, and was so excited about getting my life back and healing up from the GERD-induced asthma. In a year my lungs and throat should heal, though I do have precancerous cells in my esophagous to be followed for a few years. A few weeks out from the surgery, migratory arthritis struck, moving all over my body. It peaked the first week of March when I could not walk for 2 days. I went to several doctors, had foot x-rays, a DEXA scan (and a mammagram while there), some blood work, and managed to get in to see a very nice rheumatologist who lives next to a friend. Bottom line, my RF was 372 and the anti-CCP was greater than 250, poor prognosis. I start Paquenil tomorrow. In the meanwhile, I have exposure to TB in my past, a spot just found in my breast, lungs that need to heal up, and precancerous cells in my throat. I have severe osteopenia and now a borderline Hep B test. UGH! Seems I am cornered with limited options. What gives me hope is that perhaps I’ve had this a while and went into a 12 year remission – hopefully, I will be able to do so again. I think I got HEP B in the hospital as I noticed some symptoms afterwards, but my gut was also recovering from Nissen Fundolplication and I assumed that was the deal. I am actually handling this better than I expected, but then, my daughter is expecting a baby and it is spring, and I am still on my feet. My awesome chiropractors practice a bit outside the realms of conventional medicine, and physically moved my foot bones back into normal position. They also worked to get my shoulder back into place one day. My rheumatologist was quite surprised that my foot swelling was reduced, and I credit their nontraditional physical manipulations with being able to get around now. In fact, I am heading to the park for my evening walk with my wee dog in a minute. Of course, the Prednisone is helping too – I’m now on 10 mg. daily.
Glad to have found the site, and hoping to be in the first group, or the second. Already, my life has changed completely due to this, and my heart is wide open to the plight of everyone with this disease. Let’s work to find effective, safer treatments and a cure!

By: Mr. C.

Mr. C. — Wed, 11 Apr 2012 14:38:40 +0000

It’s the tower for me, just not sure how tall the tower is or how much the meds are doing to mask / control it.

By: Lyndsey

Lyndsey — Sun, 12 Feb 2012 15:15:46 +0000

Kelly – I would like to thank you again. I went through 8-10 books on autoimmune and RA after I was first diagnosed and although I had a sense that RA was different for everyone (DUH,right?) nothing really explained it in one concise graphic manner as you have here. Now I will quit comparing myself to the other person in my office with RA that doesn’t seem to have flares and pain and has motored along on 15 mg of MXT for 4 years. Thanks!

By: Ruby

Ruby — Sat, 04 Feb 2012 02:23:16 +0000

Tower of Terror I hate RA

By: Kelly Young

Kelly Young — Wed, 28 Sep 2011 15:24:57 +0000

Isel,
Well said. I agree that this is what is missing for RA – a little understanding of what we deal with.

By: Isel Porras

Isel Porras — Tue, 20 Sep 2011 01:56:39 +0000

Hi, I am 46 and was diagnosed in May with moderate to severe RA. I chanced upon this website as I was looking up the stages of grief. I started simponi and methotrexate in June and noticed an immediate difference throughout most of my body. In Mid-July, my shoulder and neck began to bother me. I suspect part of the pain is stress- related and the other part is RA. I haven’t quite figured out which of the four RA types I might be, despite having had the symptoms for a while. I’ m still in what might be called a “pity party”, but just want to get out of this state of mind. I mourn, I cry, worry. I don’t care what I look like, I just want to continue to work and enjoy my family. I want to have hope and do sometimes, but am filled with questions and self doubt. I don’t want sympathy from others, but they don’t seem to understand the condition assuming I’m just exaggerating or meek. My family has been so supportive, but friends just dont’t get it. I want acceptance. I want concern….. I don’t want pity, nor do I want attention. I just want to feel that they are there for me – not that I would ever put anyone in such a position as to become a pain or a burden.

By: Amy Fowler

Amy Fowler — Sat, 17 Sep 2011 19:45:02 +0000

Kelly,
I sometime wonder if its these “different courses of RA” that creates a lot of the confusion over what RA is. When someone has the the chicken pox – EVERYONE gets this blister rash that itches like crazy, etc. It’s those symptoms that allows the diagnosis of the virus. For RA, some cases, Dr’s can’t agree on a diagnosis of RA because of the lack of “textbook” symptoms. Then even once you have been diagnosed, courses of treatment are different depending on Dr. Sometimes that treatment is deemed successful with disease in remission even with visible swelling of joints.
In my own case, different symptoms appear on different days. Severity of these symptoms can be effected by humidity. I don’t know if that is common for everyone, but both winter and summer humidity extremes cause greater severity of symptoms.
I guess my point is, I believe it is these differences or courses that seem to cause a lot of the lack of understanding of our disease. That “you don’t look sick” mentality is there because of the question you are asking here – what is RA supposed to look like?

By: maggi wolfendale

maggi wolfendale — Wed, 11 May 2011 16:58:30 +0000

Dear Kelly,
A friend passed on your site address when he saw it and I’m so grateful!
I will be 50 years old in June and have had RA since I was 21. After the initial diagnosis when I was still in the army(which strangely disappeared when I got out???) it took another 2 decades to get re-diagnosed and the information I was given then just didn’t gel with my own experiences, or those of other RA sufferers I had spoken to. The answers I found here ring true and I’ll be passing on your site address myself. many thanks. Maggi

By: Kelly Young

Kelly Young — Thu, 17 Feb 2011 16:04:13 +0000

Thanks, Patty. I’m so glad you hear you are getting answers & your husband has been supportive. No, I hope you can also feel better soon!
By the way, I smiled since I’ve had a hard time trying to convince certain people that the movie theater is not “easy.”