Patient Comments: Rheumatoid Arthritis - Early Symptoms

What were your symptoms at the onset of your rheumatoid arthritis?

Comment from: Tracy, 45-54 Female (Patient) Published: December 05

I had just been through some severe personal life changes that happened back to back throughout the past year. My depression had increased as expected and my doctor related my symptoms to that so it took longer to find the true diagnosis. I would wake up in the morning just bone tired. The fatigue was there constantly and was life altering. My knees felt like if I attempted squatting, they would literally explode. It hurt my knuckles to knock on a door. The summer prior I was mountain biking and was very active. My son who was also very active often in the woods, was diagnosed with Lyme disease. 1 month later I started having those symptoms also and although the Western Blot was unequivocal it showed I did recently have parvovirus. The next summer, almost to the day I started having some of the same symptoms again and then it was clarified as RA (rheumatoid arthritis). I have read studies that parvovirus could be linked to RA and also that an extremely stressful event could be linked to RA. I guess I have both of those risk factors. I am now taking Plaquenil. That has made a big difference but I'm not in remission yet. Can't say that I look forward to our life together but it is what you make it. I am told now that it is a mild case, I hope that is as far as we go together.

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Comment from: Tria, 45-54 Female (Patient) Published: December 05

I have had no diagnosis as yet and the rheumatologist appointment is still 2 months away. Initial symptoms have been neck pain, left ankle and elbow inflammation, then both hips began to be sore although left appears to be the worst. The knees hurt also, left being the worst; my hands are also stiff first thing in the morning but are good once I use them, although they feel what I call grisly all day. I tried to continue with aerobics for a while and although it did not hurt when doing the aerobics, it was painful the next day. I have not experienced fatigue and I do not feel my joints are stiff, only my hands. My chest also feels strange and makes me feel 'blah'. I have thought if it is rheumatoid arthritis or lupus, blood tests to date have proved negative to both. But it may be some other form of arthritis but am not very happy I can no longer go to the gym as the pain the next day is too much, life sucks at the moment. Diagnosis takes too long due to long waiting lists for appointments. So far it has taken over six months to get to this stage as I think due to some stressful situations in my life six months ago; the doctors I believe thought it was due to depression and anxiety.

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Comment from: Kate, 55-64 Female (Patient) Published: November 21

I had a deer tick bite with rash, went to the doc and was given 1 week of amoxycycline. One month later, I was back at the doctor's with pain in my feet, one shoulder, and one finger. I was treated with 1 month of doxycycline. I got better, then worse. I was diagnosed with RA (rheumatoid arthritis) in mid-October. Did the Lyme cause RA? No one can/will say! By October my entire body felt swollen, in severe pain all over; very swollen legs/feet and hands. I am using a walker. I have fatigue and loss of appetite, and I am not able to sleep well.

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Comment from: Katrinka66, 65-74 Female (Patient) Published: November 20

I was just fine - jogged 5 miles each day, helped my husband build a three story addition on to the house, worked on rebuilding player pianos, sewed for others, etc. One evening about 7 years ago, my fingers began to tingle, an odd feeling. Then I went to get up from the couch and my knees pained like someone was cutting them off. By 4 AM, I was screaming to my husband to "cut off my hands". The pain was unbearable and my wrists and fingers were twisted to one side. He rushed me to the emergency room and they thought maybe it was a spider bite or something. No one really knew what to do. I was sent home when the pain let up enough for me to walk. The next night the same thing, awake at 4 AM in agony. The next day I had an appointment with my psychiatrist as I had had severe panic disorder and depression since age 23 and needed a refill. He took one look at my twisted wrist and fingers and said, "Oh my goodness, you have rheumatoid arthritis!" He pulled strings and got me into see a "booked up" rheumatologist the next day. Every joint in my body was inflamed and my CRP turned out to be about 405! I was put on prednisone 5 mg each night, but became psychotic because of this drug and could not take it at all. I was then put on methotrexate for one year, but it did nothing to help. (I later learned doctors have to follow "protocol".) Finally, I was started on Humira. Week by week, my hands began hurting less and less and I was able to hold a glass of water and feed myself. Then I could walk again with pain, but I could walk. Then I began my housework, cooking, sewing clothes, mowing the lawn, helping my husband with carpentry work, etc. Without the Humira, I think I would be dead by now, or just lying uselessly in bed screaming in pain. I've been in severe accidents when I was younger and known pain, but the pain of sudden-onset RA is indescribable.

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Comment from: Paula, 45-54 Female (Patient) Published: November 20

I was 27years old and my 2nd child was one year old when I noticed one of my fingers was inflamed, swollen. The swelling wouldn't subside. Tests showed RA (rheumatoid arthritis). Then progressively other joints started to get affected and I had much pain, not able to do up the buttons on my children's clothing. Dressing myself was very painful. I would ring my mother in tears not knowing what was happening to my body. I was hoping I would lose it after my 3rd child, as I had heard sometimes it leaves when you have children, it was not to be, I am now 50. I tried numerous medicines. I was on Arava up until 6 months ago which gave me good relief, but wanted a rest off medicines, (23 years). I was coping ok up until 2 months ago, taking prednisone 5 mg every 2nd day to get some relief. I will probably go back on Arava.

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Patient Comments

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Rheumatoid Arthritis - Treatments Question: What treatments have been effective for your rheumatoid arthritis?
Rheumatoid Arthritis - Experience Question: Please describe your experience with rheumatoid arthritis.
Rheumatoid Arthritis - Prognosis Question: What's the prognosis for your rheumatoid arthritis?
Rheumatoid Arthritis - Diet Question: Discuss the diet or other lifestyle changes you've made to relieve symptoms of RA.
Rheumatoid Arthritis - Diagnosis Question: What led to your rheumatoid arthritis diagnosis?

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