No swelling - getting diagnosis

[raina]

Hi. I'm Raina.

Here's the symptoms I do have:

-Pain in hips, knees, ankles, toes, shoulders, elbows, wrists, and fingers
-Elevated ESR (in the range of 25-55)
-Hip X-Rays 2 years apart showing joint narrowing in one of the hips (which just happens to be the one that hurts the most)
-Flare up of strange skin condition 2 years ago on hands and feet that GP couldn't diagnosis and dermatologist didn't see soon enough, but sounds like pustular psoriasis
-Nail pitting
-Family history (mom and maternal grandpa) of bad rheumatoid arthritis

Here's the symptoms I don't have:

-Joint swelling

On the basis of this, my rheumy has diagnosed me with fibromyalgia, despite the lack of muscle pain, the inability of that diagnosis to explain most of my symptoms, and he didn't even check me for tender points. He says he can't diagnose me with arthritis, PA or RA, without swelling. For the past few years as it's been going from mild to worse, I've been expecting that the swelling will show up eventually, but it hasn't. Now I'm to the point where I'm hurting all the time and I just want a diagnosis so I can get something for the pain. (I'm allergic to NSAIDs and can't take any of the usual over the counter stuf.)

I've seen some other people here say they have little or no swelling, which makes me hopeful. Unfortunately I don't think that's going to convince my rheumy. What I'm wondering is if anyone can point me to an "official" reference discussing this issue that I can show to my rheumy? I would be ever so eternally grateful.

[Allie]

Raina,

I am not sure I can add much, as I got my dx fairly easily. However, I am bumping this up to ensure it doesn't get lost overnight.

[sergecosta]

Hi Raina

I had very little swelling with my PA. Funny that you mentioned that you can't take NSAIDs. It appears that neither can I. I simply stopped taking Advil and Naproxen and two months later I was way better than I ever was. I was in chronic pain for well over 6 years. My problem areas were always the tendons and ligaments - principally in the feet, around one knee cap, and my sternum, believe it or not! It's great that you identified that NSAIDs do not work for you because it sure masked my problems for a long time. I believe it triggered my PA when the drug was minimizing the pain for however many hours it was intended to work.

I took an Advil for a headache two months ago, after having no pain for over a year, and lo and behold...my pain came back. I still have some residual pain in my right foot heel. It certainly took me some time for the pain to go away once I went off NSAIDs.

Like you, I worry about what I might need to take if my PA suddenly returns for some other reason. Everything else seems too strong or the side effects too scary. Alas, compounded dilemmas.

Good luck
Sergio

[ouchyk]

Hi,

Here is a great thread to read about tests and such.

http://www.psoriasis.org/forum/showthread.php?p=74786&highlight=favorite+question#post74786

It could be that you have fibro, but you really want to be sure, a second opinion can't hurt.

I'm like alli, slam dunk...I did have swollen hot joints to go along with the tendons and ligaments issues, my bloods ( sed rate ) showed inflammation but don't in everyone...

Such an oddball disease. I'm off nsaids for now too...

[MikeK]

Hi Raina,

Welcome to the Board! :cool: Nice to meet you. I'm sorry to hear that your hurting and that you're having problems getting a diagnosis. :(

You've gotten some pretty good advice. You also might want to seriously consider getting a second opinion. What city do you live near? Perhaps someone who also posts here lives near you and can recommend someone.
You can can also find a rheumy via the NPF's Physician Directory. The director is basically a list of derms and/or rheumys who've contacted the NPF and expressed interest in treating psoriasis and/or PA. It's not an endorsement by the NPF, but it's a great place to start. It's searchable by zip code. Here's a link to it: http://www.psoriasis.org/treatment/directory/. You also can find another rheumy via the American College of Rheumatology's website. (They also list rheumys who are located outside of the United States.) Here's a link to the "find a rheumatologist" section of their website: http://www.rheumatology.org/directory/geo.asp?aud=pat.

I hope this helps.

I hope you feel better soon.

Good luck. Keep us posted. Let us know if you have any other questions and please don't be a stranger.

Mike

[patti2957]

I couldn't see any swelling in my joints (except two, obvious sausage toes) when I was first dx'd, before I took any meds. The fact that I had patchy skin was enough to convince my rheum that I had PA right off. She did many tests, though, and found no joint swelling, but the lack of other issues confirmed it; later I realized that I had a bout with psoriasis a decade ago and that my dad has it. I would get another opinion - soon!
good luck,
patti

[RichJ]

hi raina,
sorry i can't help much but welcome to the p family. you have met some of the wonderful people on here and will find alot of great info. welcome and nice to meet you

have a good night all

richard

[Stillworking]

I just thought that I was experiencing middle age weight gain which turned out to be aggressive PA as I found out a few months later. The first rheumy I went to said that I had the start of PA and only wanted to inject cortisone into the worst joints. When I declined, he was done with me. Thank goodness I have a primary who won't take no for an answer. She got permission for me to be seen outside the HMO and I was officially off and crawling. The second opinion showed spinal compression, along with involement of a multitude of joints, tendons and synovitis. I am now on Remicade for 18 months and doing okay. If I had not gone for a second opnion, I doubt that I would be stillworking. It took me 45 minutes to walk 2 blocks before. Now I cruise it in 10 minutes. Second opnions help.