My name is Traci. I am a 49 year old wife and mother of three. In 1998, shortly after giving birth to my second child I was diagnosed with psoriasis. The areas affected included the top of my left foot, my left ankle and my left knee. I also had smaller patches on my right knee and foot. Several years later I began to feel fatigued and also had problems with tingling, pain and swelling on the bottom of my left foot where my toes connect to my foot. In 2007, a year after my third child was born, I was diagnosed with fibromyalgia and continued to have problems with fatigue, swelling, & pain. By this time my fingers would swell & hurt & I was having pain in my back and neck too. I have been trying to get my doctor to refer me to a rheumatologist since Feb. because the pain has gotten worse. The pain is across my lower back, tail bone, left leg, left knee, left foot, pelvis area, & neck. I also get very painful muscle spasms in the area around my ribs on my left side. The pain seems to radiate from my back and takes my breath away. I can only get relief from muscle relaxers & heat. The fatigue is mind numbing. I hardly have any life outside of work and feel like I miss out on so much with my family. My grandfather had psoriasis on his knee and a lot of pain in the area above. I had never heard of psoriatic arthritis at that time but looking back I am convinced he had it. I feel strongly that I have it too but my doctor keeps blaming my symptoms on fibromyalgia. I would love to have input from those who have been diagnosed. Do my symptoms sound familiar? Should I continue to fight for a referral to a rheumatologist (it has been years since I have seen one and a lot has changed since that time) or accept that all my symptoms are caused by fibromyalgia? I am attaching a picture of my left pinky toe. When I showed it to my doctor, she said "Oh, my toenails split too. That isn't caused by psoriatic arthritis." What do you think? Thanks in advance for your help. Traci
Get thee to a Rheumatologist. Obviously you can't tell from a picture but those look like psoriatic nails an at least one sausage toe to me. Sadly your symptoms sound way too familiar. The other approach is through the back door. Many of ushave started treatment through a dermatologist.
It is impossible without a culture for a doc to say those nails are not psoriatic, though they will try. A rheumy will also check for white spots ridges etc along with othe changes. Hope that pinky isn't as sore as it looks.......
Gosh that pinky nail looks just like both of mine. Never thought about them as potentially psoriatic nails bit it makes total sense!
Definitely fight for that rheumy appointment, Traci, or as suggested by Lamb, go via a dermatologist if need be.
Why are they insisting it's fibromyalgia when you have swelling? Nail quality can be greatly impacted by PsA. Get to a rheumatologist. And if you're in an area where the wait is forever, you may be able to start with the dermatologist. But get yourself checked out.
I want to thank everyone for the replies. I have wondered why my doctor thinks all my symptoms are from fibromyalgia when some, like swelling, clearly aren't. She has actually seen some of the swelling but says that my blood work doesn't indicate that I have inflammation. I don't understand how that can be since my left foot/toes swell every day and my fingers and left knee swell several times a week at the least. I will try a dermatologist and hope I don't need a referral. I haven't seen one in quite a while as my regular doctor prescribes ointment for the patches of psoriasis I have.
I have PsA. My blood work doesn't indicate inflation sometimes even when I have visible swelling in several joints. I have read that your blood work can be normal. It sure sounds to me like you have PsA. I too was diagnosed with fibro for a year before my PsA diagnosis. Good luck!
My blood work doesn't indicate that I have inflammation either. Yet I clearly do. I don't understand how a doctor will look at blood work that looks clean, and ignore joints that are obviously swollen. My rheumatologist looks at the whole picture, including patient report. My running joke is that if I'm using ice then things must be bad, especially for my feet. I do get swelling, although it can be subtle at times.
Any doctor that is only looking at your bloodwork and not considering the exam and your own report. . . . Well, I would get a second opinion. It really angers me when doctors do this. It lengthens your time to diagnosis, and clearly lengthens the amount of time that it takes for you to get proper treatment. What happens in the meantime? Permanent, serious joint damage.
We have people on this site who have experienced this. My own mom went undiagnosed for about 15 years after joint damage started occurring in her fingers. Oh, it's osteoarthritis. Nothing we can do. Except that it wasn't osteoarthritis, it was psoriatic arthritis, and it seriously damaged her fingers. Even the joint replacements and fusions that she had last year will never repair the damage. It just lowers the pain.
Traci, when my hip was deteriorating with shocking speed, my blood work showed nothing much out of the ordinary as far as inflammation went. My rheumatologist said that my PsA was mild, while I was afraid that my PsA was raging. My GP told me that it was “just” osteo, and that I needed to quit worrying so much. But, in fact, the inflammation was so bad that when the surgeon replaced the hip, I suffered massive blood loss because the inflammation in the joint was so severe. My PsA was much worse than my rheumie thought. It’s one of the quirks of this disease. There’s an article about inflammatory markers in The Newbies’ Guide:
http://discussion.livingwithpsoriaticarthritis.org/forum/topics/inflammato…
Like the others have said, you seem to have every reason to insist on going to a rheumatologist. Sadly, GPs don’t have a great track record with diagnosing this disease. Your nails certainly remind me of what mine looked like before I was diagnosed and treated. My GP was sure I had fungus.
Like tntlamb says: a rheumatologist, Traci, or failing that, a dermatologist.
You might try writing a letter to your GP requesting that she give you a referral to a rheumatologist. That will get her attention, and I suspect she will be a reluctant to refuse a formal written request.
Let us know how you get on.
Traci, I agree with everyone else- request a rheumatologist. One thing that may help is if you keep a photo log of swollen joints/fingers/toes and skin patches. Makes it harder to ignore if it is not swollen on appointment day but you have a log of photos. Also, although you are exhausted a-trust me I know try to write a couple words describing the pain and it’s severity daily. Again a little hard for them to ignore if you have a record. Hang in there!
Omg, Traci, I agree with everyone. Your symptoms are classic PsA. At least that's what my dermatologist and rheumatologist would say! You definitely need another opinion, or two or three! My blood work has always been normal except for the other inflammation test (there's CRP and CPK). The one they typically do for detecting inflammation from PsA is normal, as well as my sed rate. Also, my swelling was gradual and it took my rheumy to point it out to me in my feet. My hands were pretty obvious. It wasn't until I went on Enbrel and my feet and hands started looking skinny and bony again that I realized how swollen they had been! And the stiffness??!!--before I started Enbrel I was so stiff I walked like a 98-year old when I first got up from bed or sitting! And all that did permanent damage. My back and feet have given me lots of trouble since being in Enbrel.... But I can tell the Enbrel is working because I don't have the fatigue, stiffness or swelling I had before.
You need to get a correct diagnosis, and the sooner the better. Good luck--I feel so sorry for everyone who is suffering from PsA. I had moderate psoriasis for nearly 40 years which I tolerated well despite all the itching and embarrassment. Only a few years with PsA and I was ready to call it quits! It's not fun, but don't give up--you can feel better with the right meds!
Our pinky toenails could be twins! I didn't realize it could be related to PsA until reading this thread, but now that I think about it, since I started treatment they have gotten better.
I echo everyone else - Rheum or Derm (whatever you can get) and if your GP won't give you a referral get a new GP. It was actually a doctor at my university clinic that first diagnosed my PsA (he saw the pitting on my nails when I went in for awful foot pain and immediately said, to paraphrase and borrow from tntlamb, "Get thee to a Rheumatologist" - then proceeded to show my nail pitting to all the other doctors and nurses (with permission of course) as a "teaching moment" for them). With that said, many GPs don't recognize the nail problems as symptomatic of PsA but the fact that you have psoraisis and joint swelling/pain should have been a clear indicator.
Pinky toenails! Come to think of it, since starting aggressive treatment, I can put polish on mine. Before, they were too crumbly and gnarled to do anything with them.
Flicker, I’m impressed with the clinic doc who took advantage of using you for “Show and Tell” and having a teaching moment. You were lucky to have encountered him! For so many of us, our diagnosis and treatment has turned on being lucky enough to meet the right doc at the right time.
Yeah - I'm learning that I was very lucky to have encountered him, especially considering it was pure chance that he was my clinic doctor that day :) I've had my share of less than satisfactory doctors but I've been very lucky in that I've had a few really great ones as well, counting my current Rheum.
Seenie said:
Pinky toenails! Come to think of it, since starting aggressive treatment, I can put polish on mine. Before, they were too crumbly and gnarled to do anything with them.
Flicker, I'm impressed with the clinic doc who took advantage of using you for "Show and Tell" and having a teaching moment. You were lucky to have encountered him! For so many of us, our diagnosis and treatment has turned on being lucky enough to meet the right doc at the right time.
My blood tests did not show inflammation for approximately four to six tests. Then I was prescribed a medication that I told the Rheumatologist wasn't working. I'm sorry I don't recall the name of the medication. After the doctor took me off the medication I had a full blown flare up which finally resulted in blood tests that showed inflammation.
This made like a bizzare story, but truly it's the truth and it's how I was diagnosed!
Immunity?
Traci, how are you doing?