Thank you for approving my membership! I have been seeking a correct diagnosis for about three and a half years. I have been to my family doctor, two Rheumatologists, a neurosurgeon, and two pain management doctors. I do currently have congenital lumbar spinal stenosis, bulging discs, degenerative disc disease, primary insomnia, Raynaud’s Syndrome, and moderate to sever osteoarthritis in both knees. But none of this has explained all of my symptoms. So far we have looked at rheumatoid arthritis, fibromyalgia, Polymyalgia Rheumatica, ankylosing spondylosis, and undifferentiated Spondyloarthropathy.
My current symptoms are:
Pain and stiffness in fingers and thumbs
Swollen fingers
Nodules on several knuckles
Occasional pain in wrists
Pain in both elbows (tendonitis)
Shoulder pain (tendonitis)
Neck stiffness, pain, and grinding
Upper back burning pain
Low back pain and stiffness
SI joint pain
Occasional hip pain
Knee pain and stiffness
Dry eyes and mouth
Tachycardia
Planters fasciitis
Pain in big toes, other toes, ball of foot, heel, and other locations
Fatigue
Heat intolerance
Profuse sweating from my head mostly and particularly after a shower
One extended round of uveitis
HLA B27 negative
Inflammation markers are normal
My doctors say that there is something most likely autoimmune and rheumatological, but we just don’t have a name or face yet.
I have had a rash of sorts and occasionally small blisters on my feet, but thought it was recurrent athletes foot. After doing more research it now appears that my foot issues are actually psoriasis. I will be seeing my doctor and looking at the possibility that I have psoriatic arthritis, but I really think that is what it is.
You aren’t the first person to be a medical mystery for a long time! Have you been to a dermatologist yet? How are your toenails and fingernails? Mind you, ten or fifteen percent of PsA patients have no dermatological symptoms until after the joint misery starts, so lack of skin symptoms doesn’t rule out PsA.
Good luck with your quest for answers. Getting a solid diagnosis is the first step to feeling better. Again, welcome here.
Boy your list does seem to point to Psoriatic Arthritis doesn't it. A Dermatologist may be your best ally. Sometimes Psoriasis can be really tricky to identify. I have been very lucky with my Dermatologist she has found it between my toes, between my buttocks, my nails and my scalp. Psoriasis is sometimes called the great imitator it looks like so many other things. I had a huge welt on my foot one year. My primary had me treating ring worm. My Dermy took one look and said no that is another patch of psoriasis. I was so surprised. But after she said that i realized it had appeared right after I borrowed my step mother's ski boots which didn't fit me well and I ended up with a welt on my ankle. I now know this is the Koebner Phenomenon were a skin injury turns into psoriasis. I've had it all my life and never knew! I though I had caught soap under my wedding ring and got a rash! Even a tight bra or pants can leave a welt that is psoriasis. Who knew!
Hi ralst4...I had to comment because you pretty much described me... Even the disease in your back. The only things different are I haven't had uveitis or Raynaud's. I have vitreous detachment in both eyes that causes flashes of light and some annoying floaters, but Idk if that's related to PsA.
When you said heat intolerance and sweating from your head-Omg those are major problems I have. Of course, I blame menopause for those symptoms...I sweat from my neck up and it is so embarrassing. I've never seen anyone else sweat like that except men laboring in the hot sun! Is that actually a PsA symptom?! Wow, we shall see, if it stops from taking Enbrel--so far it hasn't.
Oh, and I've had psoriasis in a lot of places for 38 years.
It's all a major pain in the back end... I wanted you to know there is hope. I started Enbrel 4.5 weeks ago and it started making me feel better right away. (With absolutely no side effects.) There are a few others on here who got symptom relief after the first or second injection-but for some it takes longer.
I avoided most of the usual prescription meds that my rheumy tried to talk me into taking, including biologics, but OTC pain meds just didn't help and by the time I found this website a few months ago I felt hopeless. I had begged my rheumy and internist for prednisone, because I had been prescribed it a couple times in the past and knew it would help, but they refused. I guess they knew it wasn't good for me, and I actually appreciate that now, but I was so desperate for some relief.
So, I saw a new dermatologist, who prescribed me Enbrel. If you get it for psoriasis, you start on a double dose, which is 2 - 50mg shots per week for 3 months. I'm not sure if your psoriasis will qualify you, because I think it has to cover at least 10% of your body, but I feel like a success story already, and I was a doubter. I can't say what the future will hold-we may never feel perfect, but it is uplifting once you find out there actually are meds that can make you feel a lot better!
I am so glad I found this site!!! Thanks to everyone for their help and support. I figured I would go all in. Attached are a couple of pictures of what I now believe could be psoriasis. 232-image.jpg (841 KB)
Yes it certainly could be psoriasis but a Dermy can tell us for sure. Be sure to take the pictures when you see him/her as mine can get bashful when an appointment approaches.
Did the derm do a punch biopsy? As I understand it sometimes psoriasis can be a bit sneaky to look at, but the pathology is generally obvious (they could see it in my skin even though to my eye it had completely cleared up! )
Darn, Ralst … that’s a curve ball, isn’t it? If the derm didn’t think what you had was psoriasis, did he have any suggestions for what it could be? No? Is it perhaps time to get a second dermatology opinion, with perhaps a biopsy, as Jen suggested?
A small percentage of people with PsA have skin symptoms that appear after the joint symptoms, if they emerge at all.
Forgive me if I’ve forgotten, Ralst, but what kind of treatment are you on in the meanwhile?
Sybil: my Rheumy has passd me on to pain management. They have never seemed interested in PsA without the skin symptoms.
Jen: No punch test, just a visual exam.
Seenie: They thought it was just very dry skin and gave me lotion to use for four weeks. I’m currently only on Diclofinac and Cymbalta. Considering a second opinion, but going to sit back and regroup for now.
I hate to say this but psoriasis can be a blessing when you're wanting to get approved for a biologic..... And that's sort of crazy because in my case, the PsA made me way more miserable than the psoriasis! Your symptoms all match what everyone on here has dealt with and more.....so, if it's not PsA, what exactly are they telling you they think it is? Bring some of our comments to your next rheumatologist visit!
Grandma J, I was really hoping they would say it was psoriasis so I would have a name for it. They keep saying that there is something there, but we don’t have a name or face for it yet. Right now undifferentiated spondyloarthropathy is the best we have.
Ignore the typos I'm on my phone and lost my stylus.
So if they have dxd USPa, they can still step up treatment, but I must say you have an unusual combination of meds, either your doc is way off the wall, or you have been dealing with this thing for a while and have self diagnosed. I don't mean to be negative, but despite your list of occurences, there simply isn't enough there to diagnose anything but USPa, and even that is a stretch. At your next rheumy appointment, I would push for a complete count of enthesitis points, a PT referal, and a sulfazine trial if it serms apropriate after the point count and PT evsluation. Should you not respond to PT, then, we start over I guess. Chart your morning stiffness daily in the meantime and get any family history of first degree relatives.
There is far more to diagnosing PsA than some pain symptoms. There are a few in your list that simply don't fit with PsA. Your doc is going to need more hard data to be able to help you. Family history, duration of morning stiffness, response to phsical stimulus, enthesitis poits, joint counts, bilteral (or not) are helpful. I hurt here and have hurt here and here, along with other pain symptoms pretty much goes in one ear and out the other. Pain syptoms are far too subjective. The medications we take come with enoigh risk, that one needs to be sure what they are treating.
Definitely ask for a biopsy or in my case two. On sight my initial lesions which came about 18 months prior to joint issues were blamed on insect bites. When several of these lesions erupted on my legs along with a swollen knee, a biopsy was done and I was diagnosed with something called Sweets's syndrome. I wasn't convinced I had this condition as a couple of major symptoms were missing, so I sought a second opinion and another biopsy. This time the findings were psoriasis and my original dermatologist after reviewing the first biopsy concurred the results were consistent with this diagnosis. This all delayed my PsA diagnosis by a couple of months, because my rheumatologist mentioned this condition from the off, but was side-tracked by the lack of psoriasis diagnosis.
