I apologize for the length of this post, but I have been vigilant in keeping my symptoms recorded, so I could take them to my first Rheumatology appointment. That was today, and he says he thinks I have REACTIVE ARTHRITIS. I am not male, I do not have any symptoms of that illness, and all my Lupus-like symptoms seem to have been ignored, or disregarded (even if just preliminary dx).
I am posting my symptoms journal in hopes that one of you, who has gone through this, or who may still be going through this, can offer me help and/or support. Even just a kind word.
I am feeling desperate, ignored, unimportant...as I am sure many of you do (or have during diagnosis).
January 13 - Both elbows hurt for the duration of the day.
January 18 - Woke up pre-dawn with diarrhea, back pain, and leg pain.
January 19 - Symptoms from previous day persisted; back pain ceased; leg pain became more intense (level 10/10). Stayed home from work.
January 20 - Fatigued and legs are weak and sore, but no longer aching.
January 21 - Felt 100% better.
January 31 - Went out to dinner. Had a glass of wine, and a couple of bourbon drinks at the bar afterwards.
February 1 - Awoke pre-dawn, after much interrupted sleep. Intense pain in both knees began in the early morning, and worsened throughout the day (level 9/10).
February 2 - After midnight, my knee pain became much worse; elbows, wrists, hands, and ankles began to hurt at this time as well. The pain was very intense in all areas, and I was awake much of the night (level 10/10). I took Ibuprofen and went to work. My ankle pain subsided, but my knees, elbows, and hands were still very painful (level 8/10). I called my primary care physician to schedule an appointment for the next day.
February 3 - Still no foot or ankle pain at all; knee pain was less (level 6/10); elbows, wrists, and hands hurt worst that day (level 8/10), which was worsened by driving to the doctor and then to work. Primary doc prescribed Celebrex, and I began taking it immediately.
February 4 - Knees began to hurt worse than the day before; stiff and had difficulty walking (level 9/10). Elbows, wrists, and hands remained painful (level 8/10). I stayed home from work.
February 5 - Back to work, but knees and hands still painful (level 6/10); elbow pain subsided. That evening, knee pain phases out, but hands begin to hurt, and this persists throughout the night. I woke up approximately 3 to 5 times throughout the night in pain (10/10). I took 2 Tylenol PM before bedtime to help with pain and interrupted sleep. No help.
February 6 - Knee pain gone; stiffness remains. Hands hurt badly throughout the day (level 7/10). Saw Dr. Winegardner again. Received a B12 shot, along with prescriptions for Celebrex and Ultram; I begin taking Ultram immediately; had been on Celebrex since February 3. That night, hands were worse (level 9/10). Also got a B12 shot, as I have been found to be B12 deficient. Primary says I will need to continue this monthly.
February 7 - Handsâ pain level 5/10
February 8 - Handsâ pain level 5/10; very interrupted sleep (3 to 5 times awake).
February 9 - Handsâ pain level 3/10; mostly stiff and tired.
February 10 - Essentially pain-free. Hands hurt intermittently (level 2/10). Developed a painful blister all along the outside rim of my nose (left side).
February 13 - Knee pain returned (level 7/10).
February 14 - Knee pain persisted (level 7/10); late evening knee pain began to subside (level 3/10 by bedtime).
February 15 - Knee pain gone; hands level 4/10.
February 16 - Hands level 4/10.
February 17 - Hands level 3/10; night sweats.
February 18 - Hands level 6/10; elbows level 5/10.
February 19 - Flew to Arizona; ankles swollen badly upon arrival; hands and elbows 4/10; woke up 2 times during night with hand and arm pain (level 6/10).
February 20 - Fatigued; swollen knees and ankles; hands level 5/10.
February 21 - Very fatigued; swollen still; hands, arms level 10/10 by bedtime; knees level 6/10. Hardly any sleep; lots of pain; night sweats.
February 22 - Extremely fatigued; still swollen; terrible, âburningâ headache in center of forehead; hands, elbows, knees all level 8/10 for the entire day.
February 23 - Flew back home from Arizona. Still swollen about 80%; hands, elbows, and knees level 10/10 in flight; level 7/10 by bedtime.
February 24 - Fatigued; knees, elbows, hands 7/10 all day; slept on the way home from work (I carpool); napped when I got home.
February 25 - Exactly same as February 24.
February 26 - Fatigued; stayed home from work to rest; hard to walk; legs weak and painful (level 8/10); elbows and hands 6/10. Rested most of the day, with my legs elevated slightly. Walked very little; knees burn and feel swollen. Swelling in ankles subsided up to 90%.
February 27 - Legs weak and still somewhat painful (level 4/10); elbows level 4/10; hands level 5/10. Moderate headache in forehead in early morning to mid-morning.
February 28 - Overall pain level subsided; virtually pain-free the entire day. Elbows hurt (level 5/10) for about 10 minutes in the middle of the day.
March 1 - Awoke with hand, wrist, elbow, ankle, and knee pain. Level 6/10 early, but became level 8/10 by bedtime. Night sweats, very interrupted sleep, pain level consistently 8-9/10 throughout the night.
March 2 - Awake at 4:00 am due to pain and sleeplessness. Pain level 9/10 in hands, elbows, and knees, and becoming 7/10 within about 4 to 5 hours. Took 2 Ultram (approx. 4 hours apart). Also had a headache in my forehead when I woke up, but it completely subsided in approximately 2 hours.
Other Various Possibly Related or Non-related Symptoms:
Rash behind both ears since October 2008.
Heavy rash on chest since October 2008.
Extreme hyper pigmentation inside my bottom lip (have had for nearly 3 years, and keeps growing, even without sun or UV exposure)
Fatigue, lethargy for at least 2 years
Sleeplessness and night sweats for at least 3 years
PMDD (irregular, super-painful periods)
Long periods (3 weeks); early periods (every 2 weeks); skipped periods (one month only)
Osgood Schlatterâs Disease age 7 - still have knee pain into adulthood. I was told I would âoutgrowâ this.
Non-bacterial ulcer age 20; healed by age 21 via use of Prevacid and Prilosec. Have continued to take over-the-counter meds to help with heartburn and indigestion. Recent endoscopy showed healthy stomach, esophagus, and small intestine.
Benign heart arrhythmia at age 20
Bilateral elbow pain as many as 10 years ago (1999); three to five events in a yearâs time. I received no treatment.
SEVERE Hyperhydrosis at age 25; treated since age 28. Was originally prescribed Hyoscyamine, but it was discontinued a year ago. This medication was replaced with Oxybutynin. Some days, I still have breakthrough sweating; I mean PUDDLES under my feet when I wear sandals. Crazy...
Oxybutynin 5mg once daily since May 2008 (for hyperhydrosis)
Solodyn 90mg once daily since November 2008 (for acne)
Brevoxyl face wash twice daily since May 2008 (for acne)
Tazorac cream at bedtime since May 2008 (as needed for acne)
Duac gel spot treatment since May 2008 (as needed for acne spot treatment)
YAZ for PMDD since November 2008
Celebrex 200mg once daily (as of Feb. 3 for joint inflammation)
Ultram 200mg once daily (as of Feb. 6 for joint pain)
Family Health History:
Rheumatoid Arthritis (maternal grandmother has it; her brother had it; paternal great aunt had it)
Fibromyalgia (first cousin has it)
Osteoarthritis (mother has it; paternal grandmother has it)
Recent Blood Tests:
All blood tests "fairly normal" results. Positive ANA (do not know titre, but have requested a copy from my primary); negative Rheumatoid factor. These tests were performed twice by my primary. She said, "your Lupus panel is positive," and referred me to a Rheumatologist
Today, the Rheumatologist REPEATED all blood tests after my physical evaluation, and âinterviewâ process. He recommended I get a hand and pelvic x-ray; and a bone scan. He prescribed 10mg daily of Prednisone for one week, as he suspects I could have REACTIVE ARTHRITIS. Even though in my interview I told him I have no bloody stool; no vaginal sores or irritation; no mouth sores; etc. I just didnât know why he was asking about these things till I got back to work and read about Reactive Arthritis - which occurs mostly in MEN, ages 20-40 (which I am not), and because of a Venereal Disease, which I DO NOT HAVE.
My symptoms SOUND like Lupus-related occurrences, and I have been reading about each symptom as it occursâ¦it all comes back to Lupus With a "positive Lupus panel". With all these symptoms, what would lead my Rheumatologist to think I have Reactive Arthritis. Please help! I am frustrated and confused.
for almost 6 months now I haven't been feeling well. I'm 17 almost 18 and at first dr.s thought mono because of the extreme fatigue and aches. After blood showed it wasn't mono I was referred to a rhuematologist for possible autoimmune. The first rheumatologist thought maybe I had lyme even though I'd never noticed any bite. He did a little bit a blood that showed a slight vitamin D deficiency. He wrote me a rx for vitamin d and said see ya in 6 months. Went back to my general for a second opinion and he referred me to a new rheumatologist. He ran a FULL panel of blood and did ultrasounds on my hands and feet. I had my follow up today to go over all the results. My ultrasounds did show swelling but my blood is normal. He didn't tell me what tests they ran, what my numbers were just "they're fine". After all this he told me it's probably reactive arthritis and wrote me a rx for a new NSAID. My symptoms, which are:
-Swollen lymph nodes
-Almost constant low grade fever
-General feeling like crap for a long time
I'm not saying I think I have lupus but I know it's not reactive arthritis. I don't know how to get the answers I need and I'm tired of not being able to live my life anymore.
Thank you for your postings. I am suffering the same way and do appreciate the time you took to write this out. I have similiar symptoms and my nose is growing and my elbows are swollen and I have been to many doctors. They thought I had Rhumatic Fever, Siths desease, Lupus, Arthritis. The truth is not one of them really cares and they realize if they invest there energy in one patient they will loose money, so they've learned not to get attached and run out of steam while we live with this until it strips us and our friends and family of all life. I have lost much hair and have a noticeable change in my nose and wake up in the night with my hands completely dead from the lack of circulation due to the swelling in my elbows. Don't give up, that is what they want us to do. I even had the infectious desease specialist tell me that maybe I was bipolar just because I mentioned I wake up at night in pain. I asked him why he would come to such a conclusion and his reponse was that he thought I was having difficulty sleeping. It is rediculous and insulting to label someone just because you don't know what it is. I have three children and am a single mom so I don't have time to be ill. I do have a great faith that I trust in and believe if we endure we will get an answer, even if it is not what we want it to be. I have to trust that for what ever reason God is allowing me to be ignored and disregarded and he will bring good out of it. I think I was a little too attached to my appearance and I needed some humbling.
Hi, I was diagnosed with reactive arthritis december 2008 in Australia.
I started getting joint pain, mainly outside knees then progressing on to shoulders, hips and hands after returning from a holiday in Bangkok Sept 2008. I did get a case of Vomiting and Diarohea at the end of the hol.
Rheumatologist in Oz put me on Sulphur meds. Was also on increasing doses of painkillers to make it thru the day.
I didn't see great improvement until Specialist in Shanghai put me on Methotrexate prednisone and hydrocholoquine as well as Sulfasalazine 1000mgs 2xday.
Methotrexate was 1xweekly for 3 months.
Still on others but reducing dosage..... much better.
back at work...even riding my bike.
I have massage, accupuncture, and Glass cupping too every week.
Keep reading the internet... there is info out there, especially blogs from other sufferers.
hi i have just been diagnosed with reactive arthritis, and bizzarly i had been in bangkok as well. i just remember on my first day my girlfriends sister cooked for us, i ate some food, but not much, but within 30/40 minutes after eating, something came upon me, i spent the night with a fever, no vomitting, but severe sweats. i think it was this were i developed reactive. i only have it in my right knee, and ive just started on sulfasalazine. did you have a similar experience with food? ive been with my lady for a long time before and since so im ruling out chlam..
Reactive arthritis can be a very bad disease as it can progress to spondylitis, and it can caused by other than a venereal disease. I was misdx''d with lupus but turns out I also have reactive arthritis.
I hope by now you have been able to find some answers.
I was diagnosed with Reactive Arthritis in 2005, with my only symptom being swollen/painful knees, left knee worse than right.
As both knees were affected Dr was concerned may be early signs of Rheumatoid Arthritis.
After 9months, it just went away as fast as it came. Then in 2008, Litterally woke up in pain, both knees completely swollen. Tests showed I had caught Ross River Virus, and hence "Reactive Athritis" true to its name, was back.
Now exactly 3years later, I have my left knee swollen, right knee and right elbow niggling.... Test have shown Lupus this time, but still undergoing further testing, and put straight onto Salone @37.5mg daily.
So just thought I would share, that reactive may not be all the symptoms - rashes, conjunctavitis etc. But stay on top of it, as it may be the beginnings of something else.
Sunshine Coast, Australia
Hi, I too have had a series of symptoms take their turns over the past two years. I moved to australia and ever since started to develope symptoms. I remember having a really bad reaction to a mosquito bite on my right arm that eventuated into a huge blister which is normal for me. After this, episodes of feeling unwell, even now two years later, pain behind right eye ( which isn't frequent) swollen lymph node for two weeks, continuous ache and pain in right elbow with tissue swelling, urgency to urinate, pain in little finger, unable to concentrate, forgetfullness. All these symptoms take their turn and at the moment I have no symptoms. I have now cut out drinking any alcohol and meat and noticed a vast improvement, either that or I'm in remission again. My doctor says I have reactive arthritus, neg for lupus and RA. They though I had ross river but neg. I am more than anxious over what may be going on, I am 41