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HI,
Most people call me Cella
I can remember when my RA journey started like it was yesterday.
It was in 2005 that I was seen by a rheumatologist for
my osteoarthrtis. I was concerned because my fingers had bumps on them and they hurt.
So I was treated for the OA, then I saw the doctor the next month and he went over my lab work with me.
AS he looked at the lab work he shook his head as if something was wrong. He turned to me and said, the lab results indicate you have Rheumatoid Arthritis.
I responded and asked him can I have both OA andRA?
He said unfortunately, yes you can. He told me he wanted to start me on the RA meds. I told him, I don’t present any symptoms, so I would rather not take the meds.
So, I left his office and thought about the OA and RA. I just could not see myself taking meds, after all I had been physically in great shape all my life.
I was an exercise nut, and didn’t smoke or drink.
Not letting my doctor treat my RA early on was a BIG
MISTAKE!
A few months later, I noticed I had some pain in my ankles, nothing big. Then one of my fingers started swelling, still no big deal to me.
Then it Happened, one night I awoke from my sleep in excruciating pain. The sheet touching my fingers that were all on fire was too much. As I awoke, I looked at my hands, they were like sausages, so I tried to get up from bed, my knees felt like someone had broke my knee caps and as I tried to stand I fell back onto the bed. I tried again and again as I struggled to stand. The pain was intense as it felt like my whole body had been attacked.
I struggled to walk to the bathroom and could not attend to my bathroom needs , I could not hold a toothbrush.
I envisioned a life of disability and thought, “why didn’t I listen to my rheumy”
Needless to say, I stayed home from work, could not drive, could barely walk. In the days afterward I was started on methotrexate, prednisone and some other meds.
Since then I have gone through a list of RA Meds and am now on my second biologic.
I guess you could say the drugs have slowed my RA, but RA is so resilient and continues to cause other problems for me. Sjogrens came out of the RA and my eyes hurt despite the restatsis and exxovac.
I still get swollen hands and my ankles hurt along with my cervical spine, lumbar spine, my shoulders.
I have spinal stenosis and have been in and out of physical therapy.
So, yes, I can stand on my own again, but the fatigue and multiple issues combined with trying to stay in the work force seem to be wearing me down.
Driving home from work and trying to stay awake because the fatigue has just drained my body of energy. Leaves me almost hallucinating, which is a recipe for disaster.
These days I tend to just tell people I feel okay, as I know they are tiring of me not feeling well.
I realize that so many people do not understand RA.
I have tried to explain it, but just when you think you have made progress, someone will ask you something that comes out of left field.
I am very glad that we RAers have the meds to help us , but they are not a cure. I do wish the cure would come soon.
Hi, you can call the manufacturer and get low-cost or no-cost Enbrel. I was on it for a while and they have a wonderful program where in won’t cost you over $10 a month! So if you are really uncomfortable with your Dr, find another one!
J
Hi!
What are your opinions regarding medical marijuana use for chronic pain relief, and CBD to reduce inflammation? Could you please point out any information regarding medical marijuana you have on RAwarrior?
Thanks so much,
Cindi
Cindi Lamb Wiley
RD Warrior
Conowingo, MD
I want to thank everyone who shared their stories. I have not read all of them, but read Robin B’s because she and I are nearly the same age. I am 61. Our stories are different though…..I was diagnosed at the age of 37, this was after I was initially diagnosed with psoriatic arthritis (although I had no psoriasis). It took until I was nearly 41 for a Rheumotologist to diagnosis me with RA. The confusion about my diagnosis was simply due to the fact that I had no “rheumatoid factor” when tested, and still do not to this day. I’m told I am one of the “lucky” (ha ha) 15% that have RA with no rheumatoid factor in their blood.
Like most/all of you, I have had my struggles with RA throughout the years, and have been on several biologics. I am now taking Enbrel and Methotrexate. I was actually pretty bless for many years to only have occasional flares, however when I turned 50 those flares began to increase, and since I have turned 61 it feels as if there are more days with a flare than without. I wonder if age has anything to do with the disease progression? Any comments or helpful hints would be appreciated. I feel very alone with this disease. I am married but it is difficult for someone without it to understand the depths of pain you suffer. I do not have much of a social life, but would like that to change dramatically but find it hard to find friends where I reside now. I would love to make a few new people here. That would be a Godsend having someone in my life that understood. God Bless you all.
Thank you for reading this…. Sheila Hendee