My entire life I have had psoriasis on my scalp, it waxes and wanes but is never completely gone. That is the only place I know for sure that I have psoriasis, although, I have recently started to learn about the nail symptoms and never knew that ridges and pits in my nails could be associated with psoriasis; I have always had little pits in my nails that look almost like I had pierced my nail with something. Never went to doctor for that, and never had any discomfort associated with it.
I have also had intermittent joint pains throughout my life, did not go to doctor for most of them. I couldn’t possibly mention all of them here; but I will mention what I can remember.
In 1996 at age 25, my thyroid suddenly quit, and I was started on thyroid hormone replacement. I was never diagnosed for a reason for this happening; I was just put on supplementation and I will be on it for the rest of my life. I mention this because I have learned that there can be an autoimmune component to developing hypothyroidism.
In 1997, at age 26, went to doctor for wrist pains; ended up having surgery on right wrist for a presumed ganglion cyst removal, but when he was in there, he found that I had extensive tenosynovitis and he routed out a lot of the synovium and removed some bone spurs, etc. Was told afterwards that I will have chronic tendinitis in both wrists and should avoid activities that bring on flares. Was also told that I should be monitored for development of rheumatoid arthritis in the future and x-rays were taken of my wrists as baseline x-rays.
I did not go to a doctor for joint issues again for many years, although I did have trouble now and then with my joints. In about 2005, I went to a podiatrist to investigate a bad pain I was having in my feet; was diagnosed with bunions and this was on a watch-and-see status.
In 2009, I did go to the doctor for a sudden onset of weakness and shortness of breath. I had gone from being able to walk 1-2 hours a day comfortably to being winded trying to walk across the room. I ended up in the hospital for a week, and on lots of steroids and anti-anxiolytics; the only thing that ended up working was nitroglycerin patches which I wore for about a year and eventually stopped. This experience really made me gun shy about going to the doctor for any vague symptoms, as I really felt as though my symptoms appeared psychosomatic, no matter how real they seemed to me.
In about 2010, I noticed a real loss of range of motion of my right hip and did not go to doctor for that.
I had a bout of epicondylitis in late 2011 and at the same time, my tail bone began to be very tender and I was unable to sit as I used to. Did not go to doctor for those issues either but self-treated the tennis elbow at home with a strap and eventually it healed.
In Spring of 2012, I had sudden onset of severe swelling of my ankles, both ankles, daily. They were puffy and cold to the touch, and yet I did not go to the doctor for a good year after that symptom began.
In Spring of 2013, I went to the podiatrist again to see what component of the swelling and hip problems might relate to the foot problems. I was immediately scheduled for joint replacement of my first MTP joint of my right foot, as he saw on x-ray that I was bone-on-bone and there were just two giant spurs holding the joint together. He said it was impossible to see how much cartilage and joint capsule remains on a simple x-ray; when he got in and did the surgery, he found that I had zero cartilage and no joint to speak of remained. He put a titanium one in. Although the recovery from this surgery was pretty smooth and it was not particularly painful, I do not have any more range of motion in the joint than I did initially, mainly because the swelling in the joint never subsided, probably because of the PsA which was undiagnosed at the time. I would have him do a fusion in the future probably when he fixes this toe. It still is very painful and I cannot do things like getting down on the floor without being able to put weight on my right forefoot.
In summer of 2013, I finally went to doctor to discuss the swelling of my ankles, and at that time, discovered that I had some real hypertensive issues as well as blood markers positive for an autoimmune process at work.
Was referred to rheumatologist and at the first visit, as soon as he heard that I had a history of psoriasis on my scalp, he diagnosed me with psoriatic arthritis at the age of 42. I began methotrexate, waited 3 months, had minimal benefits but my liver functions worsened, so I am not to take that. I tried Humira for 3 months, had some relief of symptoms but he feels that it is not working as much as he would like to see; so next week I will have my first Enbrel injection and we will see where I am in 3 months from now with Enbrel. Fingers are crossed.
So, I am in “the gap” right now. I am spending this time educating my family and significant others about how they can help; this is not easy as I do not like to ask for help and I really don’t like to complain. I had to ask a few different ways, but finally got Physical Therapy going and I have good feelings about the idea of being able to strengthen my muscles and maybe be able to get back to walking for extended periods. Nothing would make me happier than being able to do even half the walking I used to do. I have 4 children and have been married for 20 years. I am glad to have a large supportive family but I am not 80, I am 42. I need to do all I can to have normal function.
I hope my story will be helpful to someone out there.