Around the time I started my running 2001 the joint pain started, bursitis in the hips, tennis elbow, repeated cases over the years of tendonitis/bursitis. 2004 I severed the end of a finger at work, they managed to save the finger but my biggest issue was a case of rotator tendonitis that left me in physical therapy for about 6 weeks, trying to regain the use of my arm.
My doctor told me I was to young to have arthritis. I had a few flares a year and managed my pain with Celebrex, the odd cortisone shot and pain pills. I was sent to a sports therapist, physical therapist, but never a Rheumatologist, even with a lengthy family history of arthritis and other auto immune diseases.
In 2009 I had a flare in one of my hands my doctor was on vacation and the doctor relieving took one look at my hand and said, " You have RA". He gave me a referral to my Rheumy and she figured it was PSA, although I had no psoriasis.
The end of 2012 my flares started increasing, thankfully they always seemed to happen on my days of rest, so I was able to maintain. I tried a course of Plaquniel, however due to side effects and work I had to stop.
Spring of 2013 my flares increased to bi weekly and along with the flares came daily pain. In April of 2013 the psoriasis showed up, hands and feet. I started seeing my Rheumy again regularly and started on medication.
Last week my sister was also diagnosed with PSA. It seems this disease runs in our family. Thankfully with the family history and having a younger sister already diagnosed PSA, she was diagnosed after her first appointment.
My mom sounds very similar to your mom Stoney. She has never had an official diagnosis as her experience with her first and only Rheumy was a bad one. Her hands are really bad, she also has diabetes and has also suffered a heart attack that required her to have two stints. I have been talking to her recently and urging her to follow through and get on treatment. I can almost guarantee she also has PSA, as two of her daughters are now diagnosed.
Stoney said:
I'm going to give the long long story of my mother now. She has been a type 1 (autoimmune) diabetic since the age of 31 or 32 years old. Because type 1 diabetes is a risk factor or is co-morbid with many different issues, all of her bursitis, tendonitis, etc, were never given a second look. Starting in her early 50's, the surgeries started. Not a big deal at first, started out with carpal tunnel surgery. Then in her early 60's it accelerated. Shoulder surgery was done to repair a shredded rotator cuff, partly due to an old injury. More carpal tunnel surgery, trigger finger release, and the big ones. . . back surgery. She wound up having four back surgeries, and uses a walker due to permanent nerve damage.
Her fingers started to swell and deform probably about 15 years ago, and while there were little noises about possibly inflammatory arthritis, she was basically untreated. She was told by her doctor, when she asked, that they would wind up looking like her own mother's hands had. Well, my grandmother had the most beautiful perfect hands her entire life. My mom basically only has movement left in the MCP joints, and is now looking at having fusion done on two joints, and replacement done on another, due to ongoing pain.
Last year, she had new x-rays done on her hands, and the radiologist determined that it was most likely PsA. She recently started MTX, but if you could see her hands, you would cry. They are destroyed. My mom is 69 years old, and only recently received a diagnosis and started treatment.
We all know the importance of early diagnosis and treatment. My mom will benefit only minimally from treatment at this point, due to the sheer amount of damage done at this point. I imagine how different things would have been if she had been diagnosed 15-20 years ago.
Stoney and Tara Lynn it must be very hard to watch your mother suffer so. I am trying to wrap my mind around it. My mother has never been ill, except for mental illness, and is really harsh to me about my PsA journey as if it is some sort of deficiency of mine. Thank you for this perspective. I think it must be doubly hard as we identify with our mother's so it must make you fear for your own futures. Thank goodness we live in a time of biologics and will have much less deformity than the generations of PsA patients before us. Thanks for your compassionate view point on this.
My first complaints of joint pain all over were in the late '80s. Psoriasis was first present in 1995 but never diagnosed until I was diagnosed with PsA in 2013. Had an episode of both knees on fire, full of fluid, could not bear weight in 2010 but was denied a referral and the fluid was not aspirated and analyzed or it would have been diagnosed then! So... in years, 20-30!
I wouldn't say"except for mental illness". . . . My sister is mentally ill, primarily bi-polar. I couldn't imagine having to go through the drama if it was my mother. So much rougher to manage.
On the one hand it DOES make me fear for my own future, but I also tend to be pretty stoic, so I know that I will deal with whatever comes my way. Meanwhile, I have many more years of dealing with this, having been diagnosed at 37 years old. There is no choice but to manage. I'm realizing though, that even though the deformity may be less, the damage is still real.
michael in vermont said:
Stoney and Tara Lynn it must be very hard to watch your mother suffer so. I am trying to wrap my mind around it. My mother has never been ill, except for mental illness, and is really harsh to me about my PsA journey as if it is some sort of deficiency of mine. Thank you for this perspective. I think it must be doubly hard as we identify with our mother's so it must make you fear for your own futures. Thank goodness we live in a time of biologics and will have much less deformity than the generations of PsA patients before us. Thanks for your compassionate view point on this.
first time I was diagnosed with tendinitis in 2006... later on had several more cases of "tendinitis" throughout the years... went to physical therapy, had leg braces, orthopedic inserts, and lots of NSAIDS that ruined my stomach. Now diagnosed with PSA as of a few months ago in late 2013. Oh and I was diagnosed with Psoriasis of my skin in 1989.
There were a couple of people who were diagnosed within six months, but by far the majority of us suffered symptoms that remained a medical mystery (or were blown off) for three years and up. Many of us limped along for at least twenty years.
Lamb: Please don’t ask me what the standard deviation is because I nearly failed stats 101, and that was forty years ago.
What a lot of suffering and lost productivity and pleasure these statistics represent! Let’s feel sorry for ourselves in unison. NOT!
It’s not too late to tell your story! Thread’s not closed …
30 years, or more… I kept having individual symptoms treated so no one ever put it together. Joint destruction over the last three years finally led me to a rheumatologist. My mom has RA, so I went in to find out if I had it too. Turns out it was PsA.
There were a couple of people who were diagnosed within six months, but by far the majority of us suffered symptoms that remained a medical mystery (or were blown off) for three years and up. Many of us limped along for at least twenty years.
Lamb: Please don't ask me what the standard deviation is because I nearly failed stats 101, and that was forty years ago.
What a lot of suffering and lost productivity and pleasure these statistics represent! Let's feel sorry for ourselves in unison. NOT!
It's not too late to tell your story! Thread's not closed ...
haha I just got done taking General Education Math and I had to learn how to do the standard deviation formula. That was a very long formula and would take like 10 minutes to do one problem let alone my homework would take hours.... YUCK
Exactly, Sublime. So you don’t want a go at the stats from this thread?. LOL
SublimeAmiga said:
haha I just got done taking General Education Math and I had to learn how to do the standard deviation formula. That was a very long formula and would take like 10 minutes to do one problem let alone my homework would take hours… YUCK
LOL, we do have fun here sometimes! Anyway, I hope this thread continues to populate. I find the things that people say very interesting. I also feel a sadness when I think of the years spent looking for a diagnosis. What a loss of quality of life!
My first symptoms were severe uveitis and iritis. Two years later severe psoriasis breakout. One year after that random stiff fingers and toes (only one at a time) stumped dr's. Two years after that full blown body flare, all the joints. I really can't blame the dr's for being unable to dx early based on my backwards presentation of symptoms (eyes first). I guess 2 years from the psoriasis / stiff fingers and toes to dx? PsA was pretty new then (1978) and juvenile onset even more rare.
My first symptom in 2005 was muscle pain and spasm in my neck, caused by inflammation of the fascia. In 2010 I mentioned joint pain to my doc. I'm not sure when that started, probably in 2009, as the soft tissue pain and tension in my hands makes it difficult to tell what's joint vs soft tissue pain. In late 2010 I was diagnosed with OA, courtesy of a bony node on my pinky. Fast forward a few years, and I had skin and eye involvement, severe joint pain, sausagey fingers and toes, and neurological issues. It was almost 9 years to dx.
Thinking about it I had growing pains as a child like some of you! I was told they were growing pains, I remember crying at night as a kid over them. When I was 9 I had a single langerhans cell histocytitis (sp?) lesion in my cervical spine.
I’ve read a few places children with it are more likely to have a strong family history of autoimmune diseases.
As an adult I would say it started around 8 years ago with my neck. And being incredibly tired. Not having a gp I never could really follow up with a doc and was told to get more rest,
Forgot to add when I was in 8th grade I broke out in a red scaly rash in patches all over my body. No one else in my family got it but me. It cleared up on its own… Doctor didn’t even take it seriously…
I had growing pains all the time in my legs :( I had no idea?!
West_CoastMeg said:
Thinking about it I had growing pains as a child like some of you! I was told they were growing pains, I remember crying at night as a kid over them. When I was 9 I had a single langerhans cell histocytitis (sp?) lesion in my cervical spine.
I've read a few places children with it are more likely to have a strong of autoimmune diseases. As an adult I would say it started around 8 years ago with my neck. And being incredibly tired. Not having a gp I never could really follow up with a doc and was told to get more rest,
I would love to have a good answer to this for myself. Even as a kid, the family joke was that I was standing behind the door when they handed out the good tendons and ligaments. My mother once suggested that I ought to marry an orthopedic surgeon. I don't think she was joking!
I've had trouble with a knee since hurting it in 1978. Surgery on that knee in 1985 damaged a jaw joint, which has been a problem ever since, three surgeries and countless other treatments later. Probably 25 years ago I ended up in the ER with a foot I suddenly couldn't bear weight on. Then there were the months-long episodes of "tennis elbow" in the non-racket arm, the "bursitis" in a hip, and on and on.
Psoriasis reared its ugly head about 20 years ago in the aftermath of an allergic reaction to amoxicillin for a strep infection. My little toes "sausaged" at least five years ago, and I've had nail problems for maybe 15 years. A bad reaction to a drug about five years ago left me with joint pain for months. Surgery for a trigger finger 3 years ago caused hand problems that never did clear up, and helped lead to a visit with a rheumatologist a year later when one elbow lost a lot of range of motion. The third rheumy finally decided that it was indeed PsA. She feels that the TMJ problems are definitely PsA related. That means this has been active since at least 1985: that would be 29 years.
