I'm new here as of this evening, but I've had a chance to read a number of your comments, and I'm impressed with the compassion, support and creative ideas. I look forward to getting to know you better.
I do not actually have a PsA diagnosis from a rheumatologist yet - I'm getting the idea from you all that this may not count for much. My diagnosis is sort of from an infectious disease/travel medicine specialist my husband and I have visited several times in a ridiculous, painful and stressful trajectory that we try to laugh about. I will actually get to see a real, live rheumatologist on February 20th.
I have a strong family history of rheumatic disorders. My Mom had both gout and psoriasis. I have two brothers and two sisters. Both of my two brothers have gout. One of my sisters has dealt with fibromyalgia for years. Three of my four siblings have had extensive, troublesome cutaneous psoriasis throughout their adult lives, and one of those sibs, my younger brother, has modedrate deformities of the fingers and nails of his right hand due to psoriatic arthritis. Given the strong genetic component of PsA and other rheumatic disorders, a health care provider might consider that in making a differential diagnosis. I bet you can guess that this is not the case.
In October, 2011, I had what a thought was a stubborn conjunctivitis that would not go away with my usual remedies: cold compresses and patience. I saw an Immediate Care doctor who put me on an antibiotic. I also showed her a little patch of redness at the base of my R 4th toe that was slightly painful. She told me I should see a podiatrist. New to town, I picked one out of the phone book. By the time I saw him, about 60% of my R foot was red, swollen, hot and painful. He prescribed an antibiotic, and although I took the full course, my foot got worse, and my 4th toe was swollen and discolored. My foot was so swollen, I couldn't get a shoe on, and I haven't worn a shoe since! Unable to get an appointment with the podiatrist, I went back to Immediate Care, was given a different antibiotic, but my foot kept getting worse. I made a third visit to Immediate Care, was given yet another antibiotic by a doctor who did not even look at my foot and obviously did not care if I lived or died.
We headed off on a long-planned trip to visit our daughter and her family in Colorado. I was afraid I might have some contagious problem, so while I enjoyed looking at our grandchildren, I didn't go near them. We went to the ER, where I was seen by a couple of kind and compassionate physicians: a podiatrist and a hospitalist. They put me on two more antibiotics and told me to continue the one I was still on. Although my foot had hurt, and it had become difficult to walk, I'd never felt sick until that night. I had teeth-chattering chills all night and my previously normal temperature spiked to 103 degrees. Big red blotches worked themselves up my leg toward my knee, and I thought I might have blood poisoning. We returned to the hospital the next day, and I was admitted with a tentative diagnosis of MRSA - (methicillin-resisitant staph aureus) and yet another antibiotic - IV vancomycin - was added to my meds. Foot x-rays were normal, as was my blood work. The next day I had the most painful experience of my life: an MRI of my R foot. I'd had MRIs before. They had not been painful. But the very slight pressure of the disposable pad on the MRI piece that held my foot in place was excruciating. Before we even started the test, I said, "I don't think I can get through 45 minutes of this." The imaging staff didn't pay much attention. As the MRI continued and continued, I felt as if an auger was boring a hole through my foot. I was just sobbing with pain, and I'm not a person who often cries in public. About 30 minutes into the procedure, I said, "I am getting up and walking out of here if you do not get me some pain medication, and I am filing a lawsuit against the hospital as a corporation and against each one of your as individuals." They stopped the MRI and got some minor administrator who kept crooning at me: don't you want to just continue and get this over with? It was apparently very hard to find any doctor in the hospital, but I finally got 1 mg. of hydromorphone, which did very little, and later I think I was given more, but my brain was just scrambled eggs with pain. You know that: rate your pain on a scale of 1-10? I've never found that useful, but in my head the pain was saying: "Ten. Eleven. Twelve. Thirteen. Fifteen." I began thinking that I was being tortured somewhere around twelve, and started wondering if I would give up someone from my intelligence unit (if I belonged to one) at that point. At thirteen? At fifteen, if it happened to be someone I didn't like very much? And then a line from Edna St. Vincent Millay came into my head. I'm probably misquoting it, but I just kept repeating it to myself: Am I a spy in the land of the living / That I should give men over to death? I like to think that I would not have betrayed my cell, but we didn't get past fifteen.
Taken back to the main hospital, still sobbing and still shaking, but feeling better after seeing my husband's face, a word started forming in my brain. The very kind and bright Infectious Disease Specialist who was one of the people treating me came in and sat down and said that scrutinizing their data on me, he saw no fever or "blotches" until after the added sulfa drug and that my blood work had been consistently normal. While some of the staff thought from the very ambiguous MRI that I had osteomyelitis - an infection of bone and surrounding tissue, manifesting itself as cellulitis, he thought that I was having an allergic reaction to all the antibiotics. He explained the possible risks, but said that in the absence of a wound, injury or surgery that it was extremely unlikely that I had osteomyelitis. We agreed to stop all antibiotics and I got a good night's sleep with my husband in my hospital bed. The Infectious Disease Specialist - bless him - did not, as he worried all night that I would die.
My foot looked a lot better, but that R4th toe remained swollen and discolored. I just wanted to get out of the hospital, and did, and had a good Thanksgiving with our kids. Back home, my toe still looked weird, but I felt fine. Nevertheless, I made an appointment with a podiatrist just to check things out. She was a very aggressive woman, and got copies of my Colorado records and a CD of my MRI. She and a local radiologist were convinced that I had osteomyelitis. On my return visit, she shocked my husband and me into silence by saying that she wanted to amputate my R 4th toe and about half of the metatarsal bone (the foot bone that connects to the toe), so that my bones didn't all turn to mush and lead to a gruesome death. She wanted to schedule the amputation for mid-January. My first thought was that I could live without my toe. After we got out of her office, I began to wonder about her ability to think rationally.
Both she and the doctors in the Colorado ER had made the same logical mistake (where is Mr. Spock when you need him?): because I had been treated with an antibiotic, I must have an infection, and because I had been treated with multiple antibiotics, I must have a serious infection resistant to everything. My husband and I are both scientists, and we decided to go back to square one and look at all the possibilities. In this we had the help of an Infectious Disease Specialist, who was also unwilling to accept Dr. Lopper's diagnosis without more evidence. And then I remembered that word I'd been trying to think of during the MRI: allodynia. I've realized that the city we've moved to does not have the brightest doctors in the world, and our ID Specialist had never heard the word, but when I explained to him that it meant an abnormal, extreme pain response to a normally non-painful stimulus, he said: "Gout." Interestingly, my older brother, who suffers with painful gout, had suggested this a couple of days before, and my psychiatrist (who is, of course, an MD) had looked at my toe a couple of days before and said: "Gout."
I understand that allodynia can be a symptom of PsA as well.
Because I can barely tolerate NSAIDs, I was put on an evil medication called colcrys. I felt better getting into the rheumatoid family. But this was such an abnormal presentation for gout. Gradual, instead of sudden. Did not occur at night. 4th toe instead of big toe. Certainly possible, but it just didn't feel right. I began reading The Journal of Rheumatology and ran into another helpful word: dactylitis. I Googled it and clicked: Images - and voila! - there was my little discolored sausage toe. The more I read in various places, the more I read that it was often a symptom of PsA. Given how many first degree relatives I have with psoriasis, and one with psoriatic arthritis, I was suspicious.
Of course, I was also terrified that I had a gruesome bone infection that was getting worse and worse while I was reading medical journals in the stacks. What to do? Whom to talk to? Dr. Lopper? I tried and tried to get an appointment or a referral to a rheumatologist, without luck. We had another visit scheduled with our kids in Colorado, and a few days before we were to leave, I told my husband not to get near me, as I had conjunctivitis symptoms and didn't want him to get it and pass it on to the grandkids. And I had strange, hive-like eruptions on the sides of my face. And a little tickle in the palm of my left hand. The next morning, I could not move the 3rd finger of my L hand, the palmar surface was swollen and the back of my hand was swollen. Looking back over my notes, I realized that the toe incident had started with what I thought was conjunctivitis: red, swollen, scratchy, painful, tearing eyes and weird hives. I made both my psychiatrist and my new PCP document the swelling and inability to bend my finger. At last I was sure I did not have a deadly bone infection, because bone infections don't spread from R foot to L hand, nor spread in that way at all.
Checking more of my notes, I realized that when I took NSAIDs (which are so hard on my stomach) my symptoms abated, and when I did not, I got what I've started to call the flare: painful eyes, painful joints, skin eruptions and extreme fatigue.
It is now about two months since I saw Dr. Lopper. Had she done an intelligent differential diagnosis, she would have considered rheumatoid problems, and I would have seen a rheumatologist by now. As it is, the middle joint of my R 4th toe is hard and unbendable and the swelling of the metatarsal joint beneath it is so painful that I can hardly walk. My R 3rd toe is also painful to bend, and the R 3rd metatarsal is painful to walk on. My R 2nd toe is painful. The L 3rd finger is better, but the L 4th finger is painful and somewhat swollen, as is the R 3rd finger. My eyes are so sensitive to light that I have to wear sunglasses to use the computer.
My most worrisome symptom is pain in the middle area of my rib cage, which has awakened me almost every night since last October. It hurts to inhale or expand my chest. I get up for a couple of hours and walk around or sit up and read until it eases up. Early on, I once went to Immediate Care because it hurt so much I thought I was having a gall bladder attack. The physician on duty was actively hostile toward me; I have no idea why. The next time I woke up with severe chest wall (?) pain I thought I might be having a heart attack - I'm 58 and have a poor family history there; my younger brother had his first heart attack at age 46. I was so tired of it all that I said, "What the heck" and turned over. If I was dying, I'd prefer to do it in my own bed, next to my beloved husband.
So I have these bizarre (to me) symptoms. They seem to get better when I take NSAIDs and I am eating a lot of food with anti-inflammatory properties, such as turmeric, ginger, green tea, pineapple. I have interrupted sleep almost every night, which is making me dotty, and I have worrisome pain in some part of my chest, all the way around. I was diagnosed with osteoarthritis in my knees last spring, and bursitis in my hip joints last fall, which I now read can be confused with PsA. I was referred to a Physical Therapist for help with the bursitis; she's the only sensible person I've seen. She did a lot of evaluation and is sure that the chest pain is neither muscular nor skeletal. Because the foot problems interfered with our exercises, I had to stop seeing her.
I can't get down on the floor and play with my little granddaughter, because it hurts me knees and my hips. I can't keep up with my grandson (5) in outdoor play. I can walk about as far as the end of the block, and am exhausted before I get to the end of my grocery shopping. I used to be an extremely energetic woman. Now I need my morning and afternoon naps. Ordinary light hurts my eyes.
Does any of this resonate with anyone? I'm not qualified to make a rheumatological diagnosis, but neither have I cut off my toe nor poisoned myself with antibiotics.
I'm certainly not asking anyone here for a diagnosis. But does anyone have any suggestions? I'm afraid I'm going to see the rheumatologist and she'll have nothing definite to tell me; I'm also afraid that she's going to be pretty mediocre.
I'm very depressed, but that seems completely normal since I go from my bed to my chair to the bathroom, and a couple of times a day downstairs for a meal. I'm afraid that I won't be able to walk normally again.
However, there's at least one positive, and that's that I can get on and off those trains at the Denver International Airport with a wheelchair and an attendant without fear of being squashed between the doors! Also, my dear husband and I laugh a lot about Dr. Lopper now.
Thank you very much for listening, and thank you for sharing your stories. I'm so very sorry for the suffering you've gone through and are going through, and impressed by your courage in keeping on keeping on.