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Hi I’m feeling so frustrated.
Here is my story. I’d like any input you may have.
My PCP Dr. Has been telling me a couple years now he thinks I have some type of inflammatory arthritis. Rheumatoid was ruled out.
My pain started in my feet almost out of no where. My PCP ordered an MRI. I have arthritis in top of my feet, Achilles tendinitis, plantar fasciitis in both feet and “torn” tendons in both feet. By the time I saw the podiatrist the pain was unbearable. She ordered a round of steroids, mentioned surgery and sent me to a rheumatologist. The steroids helped so much i thought that was the key. Boy was I wrong. Didn’t get much help from rheumatologist. I then went to a dermatologist to get a diagnosis on scalp, forehead & nail pitting. His dx was scalp & nail psoriasis. Told me 90% of people with nail psoriasis will have or develop psoriatic arthritis. Questioned me about joint pain. By this time it was horrible and I had just came out of what I called a “flare”. He dx me with psoriatic arthritis. Felt like the world was lifted off my shoulders! I had a diagnosis and I was going to finally get relief, right? WRONG! I scheduled an appointment with my rheumatologist and brought in my dx from the dermatologist. As he was reading it he was shaking his head no. He told me I DO NOT have PsA. I felt so defeated! His dx is fibromyalgia, because I felt like he didn’t know what else to say. Told me I have no “sausage digits” and not enough nail pitting. Also told me I don’t have psoriasis that I have seborrheic dermatitis. As you can imagine I was upset but I think he was “offended” with the dermatologist dx. Asked me why I believed the dermatologist over him. I told him I have been researching and reading lots of message boards and I can relate with most all symptoms of the pain. He told me google is not a dr! I told him no but it’s real people with real stories. I have joint pain! Only muscle pain I experience is calf muscles at night which leads my to believe it is definitely not fibro. Maybe it’s a combination? I’m not even sure what to do at this point! The brain fog and fatigue are also bringing me down. I have been searching for answers for over 2 years now. I don’t get if the couch much because the pain is unbearable most of the time.
Sorry for such a long post. Please I need feedback!

  1. forgot to add I also have knee pain, swelling, dx with bursitis. I have ankle pain and also joint pain in my hands! My hands have woke be at night multiple times from pain.

    1. I can also sympathize on the knee pain and swelling @Defeated. I have had to have surgeries on both knees this year. Have you tried a heating blanket or heating pad? It definitely helps me. I really do hope you will find another rheumatologist. It is so frustrating when doctors treat you like you do not know what you are talking about. Vickie W., Team Member

  2. I am so sorry you are going through all this @defeated. My suggestion and pardon the pun but run do not walk and find another rheumatologist. You do not have to have sausage fingers to have psoriatic arthritis. It definitely sounds like he took offense to your dermatologist diagnosis. You also can just have the dermatologist treat you. I did for years without having a rheumatologist. The sad part is there is not a definitive test that can say you have psoriatic arthritis. As a derm once told me what does it matter what kind of arthritis it is. It is still joint pain. If your not sure about another rheumatologist you can go to the National Psoriasis Foundation website and search by zip code for one in your area. Keep pushing and keep looking for answers. It is your health not his. We are here for you. Please let us know if you decide to get a second opinion. Vickie W., Team Member

    1. I definitely will get a second opinion. The scary part is he is known as one of the best in my area. I’m so sorry for everyone suffering and I hope he is correct that I don’t have that BUT I really think I do and I’m afraid of joint damage. He did blood work and my inflammation markers are high. I’m just so frustrated. He actually told me he thinks the dermatologist mislead me in his dx. I am to the point I can’t go up or down steps with a hand railing or help. I have lost so much ROM in my left knee and my right knee is also starting to bother me.

      1. Hi . Even some of the best rheumatologists might not be very familiar with PsA. There are so many health conditions that fall under the rheumatology umbrella that it would be impossible for one doctor to be an expert in all of them. PsA is complicated to diagnose and not likely a favorite for many doctors, so I would not be surprised to find that your rheumatologist doesn't know much about it, regardless of his reputation. Do you know anyone with PsA? If so, you might want to get the name of that person's doctor. You can also try calling around to the offices of rheumatologists and asking the staff whether that particular doctor has many PsA patients. I hope you get some answers and some relief. Thinking of you. - Lori (Team Member)

    2. It took me 5 rheumatologists to get a diagnosis.

      1 - looks like MS, MRI, nope
      2 - can't find anything
      3 - poke poke, fibromyalgia (5 minute appointment, go see your GP for meds)
      4 - wait and see, keep seeing me, probably some type of inflammatory arthritis, COVID halted everything
      5 - I moved to a new city, got a referral and some xrays, got in fast and diagnosed !

      Six if I count the one I saw in my 20s that ruled out Lupus. I'm 52 & spent the last 12 years with increasing joint issues and pain and fatigue trying to find a diagnosis as things progressed. In between there I had SI joint dysfunction, hip bursitis, various tendon issues, etc. My current rheumie assessed me & then actually asked me what I thought I had (it was a painful assessment - poking & prodding). I said either seronegative RA or PsA as things are very symmetrical. She said I definitely had PsA and prescribed Otezla - which is for mild to moderate PsA and "I wouldn't call yours mild". I'm now trying Humira biosimilar.

      For your next rheumie, come armed with some stats. Approximately 30% of people with psoriaisis develop PsA, and something like 30% of those get 'sausage finger'. Some folks never even have psoriasis but have it in their family. I had scalp psoriasis in my teens and a small spot on my elbow now that comes & goes. I have no nail pitting but do have Beau's lines on most nails. There is a lot of variation.

      Best of luck but do seek out a new rheumie soon - everything takes time - getting in for an appointment, getting the diagnosis, any treatment seems to take at least 3 months to kick in (with the exception of steroids, not always a good option though due to side effects) and the first treatments may not work for you. During this time permanent damage can occur.

      Bare minimum you need a new rheumie who wants to work with you, not one with a chip on his shoulder. Remember you will be working with this person for years to come.

      1. @Northernelf thank you for responding. Wow so it really took 6 doctors. That is crazy. I am so glad you finally found the last one who even asked you what you thought you had. I wish there were more of them that actually did that. I too am on Otezla. It has actually worked for me. Hopefully the Humira biosimilar will work for you. Please keep us updated. Vickie W., Team Member

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