Since my arm and elbow are currently cramping up I am going to make this short.
My last visit to a rheumy ruled out rheumatoid arthritis. I had no inflammatory markers to help diagnose PSA and as it was years ago at the time so signs of damage. Even with my psoriasis very apparent and long given history of symptoms there was nothing this doc could say or do besides give me a scrip for naproxen sodium, which I already take. I broke down in tears. He was not a caring doctor. He gave me no answers or comfort or shown any signs that he was going to help me figure it out. He looked at me like most people did at the time when I complained of years of mysterious pain, like a hypochondriac. I let that experience scar me and keep me from returning to any doctor. Along with many previous unsuccessful visits. Now I know sometimes these diseases take a long time to diagnose. But I’m so fiercely independent sometimes it gets in the way of me getting real help. I can’t get treatment without a diagnosis.
So… Please tell me how you got diagnosed and what historians questions did you ask. What made the difference? I guess I will begin my search once again for the right sympathetic doctor. 
I was lucky enough to be diagnosed fast with joint swelling in my fingers and no markers in my blood. I had just one tiny spot of psoriasis, but a long history of Raynauds, and the new joint swelling. I started off with my gp, who ran all of the blood work, including for Lyme disease (I live in NY). She sent me off to a rheumatologist who thank goodness didn’t rely solely on blood work. I had been sent to a rheumy five years prior when my Raynauds caused frostbite.
Your history of psoriasis as well as ANY joint issues, including soft tissue problems such as tendinitis. Morning stiffness or stiffness when you get up as well as how long it lasts. Joint pain and any range of motion issues, as well as joint swelling. Do you have red, warm joints? Family history of any autoimmune disease, fatigue.
If you don’t have health insurance at this point, are you going to get it before the new year begins? You may want to do research as to what specialists in your area take which plans.
Nikibobby, I have had some hair-raising experiences with doctors. Some bizarre, some worse than that really. When I was a young woman I got blown-out on several times when trying to get my rash diagnosed. One GP gave me a lecture about how we were no longer living in the stone age because I couldn't and wouldn't shave my inflamed armpits. I found some experiences around childbirth traumatic and possibly downright dangerous. My impression is that doctors in the UK have improved considerably, possibly because the profession is drawing in more people from different backgrounds.
So overall, I now feel tremendous gratitude towards most of the doctors I see. My PsA diagnosis was relatively straightforward. There was one big blip though, with a rheumy who seemed to be auditioning for a role in Monty Python. I reckon he single-handed set my progress back a year or so. By that time though, something in my attitude had changed. He tried to make it personal, shouting at me, then inviting me back for an 'informal chat' so I could watch him strutting around 'his' ward before shouting at me again and asking me if I'd like to exhibit my paintings somewhere in the hospital. He told me he'd just had lunch with the chief exec and could make things like that happen ...... wow. And to think I was wasting his time asking for a slightly higher dose of Methotrexate so I could like, you know, walk .....
What's changed? Well, I got desperate. Not desperate-angry, desperate-determined. I asked for a second opinion with a different rheumy in a different hospital. Dr Thingy sent me a near incomprehensible letter saying (I think) that that wasn't going to happen. I phoned up the Patient Liaison service at the hospital and asked if they could help interpret it, they could not. I waited 6 months for a new rheumy. The new rheumy's professionalism and expertise were evident from the start. He did not mess around and as soon as he could he started me on Humira. To be honest, I did myself no favours at that first appointment, I was extremely stressed and expecting the worst. But his pertinent questions soon got the info he needed. A thorough physical examination clinched it. I did not need to be the perfect patient, I just needed to have active PsA.
I hope you can find a good doctor too, very soon. But the thing is, wonderful as the good ones are, they are a means to an end for us. The um, less good ones, they need to be passed by. Their incompetence or complete lack of people skills are not our problem. Or they won't be once we find the professionals who can really help. The 'scars' you talk of will disappear once things get moving. Being fiercely independent is a good thing, that's not why you've had such a difficult journey. It is not your fault.
Stoney gives excellent advice. Make sure you are clear about all the indicators of PsA that you have and don't omit anything that does not fit the picture ... it could still be PsA but if it isn't your rheumy will still require the best possible information about what is going on. But the key thing is to find a good rheumy.
Nickibobby, I had symptoms – many symptoms – for years. What finally nailed the diagnosis in my case was joint erosions in my midfoot. I had never had inflammatorry markers that were out of the normal range, so in the many years that I had mystery symptoms, nobody (mainly my GP) ever considered an inflammatory arthritis.
So when the damage was found, I knew that I had inflammatory arthritis, but what kind was a mystery. I started on my own diagnosis mission, and I hit Google hard. I kept coming back to PsA, which I didn’t believe because I didn’t have psoriasis. But with more research, and I realized that I did have psoriasis. By the time I got to the rheumatologist, I had a list of current and past symptoms. It was a fairly eay job for her to make a diagnosis.
You are smart, independent and motivated. Thank goodness for that. I would say make a list of symptoms that you have and also that you have had in the past. To do that effectively, you will need to research this disease as thoroughly as you can. There’s tons of stuff in our Newbies’ Guide as a start. The book that I recommend in the Book Reviews section is invaluable: it describes in detail how PsA is diagnosed (or rather, how it should be diagnosed). One thing that you need to know is that something like fifty percent of people with PsA are like me: there’s nothing about their inflammatory markers which would make a doctor suspect an inflammatory arthritis. That particular oddity is probably the biggest stumbling block in getting this disease diagnosed, along with the fact that our pain is often not confined to the joints, because PsA also attacks tendons.
So getting a diagnosis done efficiently may well depend on your going into the consultation very well prepared, and unafraid of explaining to the doctor why you think that you have PsA. You may find, on meeting the rheumatologist, that s/he doesn’t need to be primed with your information. But you are going to have to have your homework done before you go there.
Nikibobby, I had pain for a long time, too, but never really wanted to connect it with PsA. So, I didn't really make many doctor appointments because they pretty much just wanted to throw pain pills at me if I did mention pain. And I hate filling my body with pills--they're like poison to me.
I don't have the inflammatory markers in my blood tests, either. You need to find a doctor who knows more about PsA. You don't necessarily have visible swelling. A good doctor can feel PsA in your joints. Do you have tendonitis in one or more places? I had a lot of it. Are you weak and tired all the time--when you shouldn't be tired?
PsA symptoms are varied, but there are things we seem to have in common. Everybody's pain is probably described a little differently, but we can relate. The time I told my rheumy my fingers always felt "fizzy", he laughed and said her never heard that one before! But, that's how they sometimes felt. Or, they felt like they were being squished in a vice grip!!!! And, I only had one finger that was sausage-like. But they all hurt, along with my knuckles and wrists-and a ton of other pains and symptoms I was having.
You'll just need to be persistent. Someone will listen and understand. The sooner, the better!
My fingers would always swell up in the mornings I couldn’t put my rings on. I have short stubby fingers anyways so it is hard to tell but they have been red and swollen before especially the outside two toes on each foot. My pinkie toes are curled forward I can no longer straighten them out. I have tendonitis in my arms, elbows, wrists, low back to hips, legs and feet. Oh how my feet used to bother me! I wake up and my feet hit the floor and instant pain. I wake up exhausted every morning and that feeling lasts all day.
That's a lot going on. It sounds real, believe it, though of course you'd rather not! This is not 'normal' at all and you need that diagnosis and the options it will bring. In your shoes I'd be wanting treatment if only for the fatigue, which is the one symptom that for many of us is the one thing that is too much to bear. At the age of 56 I felt more alive than I had for years once the drugs I'd feared started to take effect. And I still do. I have no agenda with regards to recommending treatment other than my own experience really.
Nikibobby said:
My fingers would always swell up in the mornings I couldn't put my rings on. I have short stubby fingers anyways so it is hard to tell but they have been red and swollen before especially the outside two toes on each foot. My pinkie toes are curled forward I can no longer straighten them out. I have tendonitis in my arms, elbows, wrists, low back to hips, legs and feet. Oh how my feet used to bother me! I wake up and my feet hit the floor and instant pain. I wake up exhausted every morning and that feeling lasts all day.
The funny thing is, in my teens I always made excuses for this or that pain or symptom. I blamed diet since mine was horrible but I blamed working out too hard or some things I just took as normal because in my young mind arthritis wasn’t even conceivable. So for a long time I felt like that was just a normal thing. Aches and pains came with life. It wasn’t until I got older and realized how limited I was compared to others my age in college that I knew something was definitely wrong and I wasn’t just making it up or complaining for no reason.
Interesting, isn’t it, how we adapt to our situation, blaming it on perfectly normal things like doing too much or not eating well enough. And really, how were you to know what it was like to be in the skin of a “normal” person? Reminds me of when I first got glasses at the age of 19. I put them on, and oh my! I could see every brick on a building! How was I to have known that everybody didn’t see the faces of buildings as a textural blur? In my middle age, the pain and fatigue crept up on me, and I just regrded it as something that came with ageing, or hard work or menopause.
You are not making any of this up. You are strong and determined, and that has got you a long way despite whatever this is. It sounds a lot like PsA, but I’m no rheumie.
BTW, how did you feel when you were pregnant?
When I was pregnant was a nightmare. With my first born the joint pain seemed to double. My skin rash spread all over my body and my clothes made it burn like crazy and irritate it. With my son the joint pain wasn’t as bad except in my back but the skin rash was horribly itching. I spent months scratching and waking up all night, and being so big with my son made it hard too be around at all. I worked up until the week before my c section and I had a desk job but I literally felt like I was crawling into work at 6:30am. I couldn’t hardly get into my car, worse pain when I had been sitting for the commute. It seems like as long as I’m moving I feel better but at the end of the day when I stop all the pain comes rushing back and I lay in bed and rest but my feet and knees sear in pain. Like fire but also like someone is stabbing my arms and knees.
Moving does help--but it's so hard to keep moving when you feel exhausted. :-(
Ugh … lying in bed with “that” pain. I remember my whole lower half (and especially my feet)feeling like it was in knots and on fire. Horrible.
I don’t know if you’ve found this article already. I should have pointed you to it sooner. Sorry.
http://discussion.livingwithpsoriaticarthritis.org/forum/topics/getting-th…
Nikibobby, how are you? Haven’t heard a thing from you for a while. When you get a chance, let us know, OK?
I’ve been ok. Started working a full time job at a medical office again so I’ve been worn out and most days struggle to just get through it. Between the job, kids and responsibilities at home I don’t have much time. Still working on getting on insurance again so I can go back to the doc. My hands are cooperating much these days. Certain fingers I can’t close all the way anymore.
Good for you, Nikibobby!