I am curious how any of your journeys began with PsA. How did you know or find out you had PsA? Looking back over the last few years, I feel this has been brewing but not acknowledged as a real thing until about a year or so ago. And it is still a work in process trying to find a life balance (since everything has changed) and the right meds that get me thru the day. I wonder for my own peace of mind but also for my daughter who is in her early 30's and has begun having problems as well. I would say she is having sympathy pains (haha) but her bloodwork has been showing the same autoimmune issues. the one time I don't want her to follow in mom's footsteps! Would love to hear from you all. This is all new and quite challenging...so please share....
Hi, Breckstar, and welcome! Too bad you've had to join us, but I'm glad you're here! Asking for our stories ... LOL, oh boy, do we have stories! Most of us have two stories: one story being how our disease was diagnosed, and the other being how we got to the point of our disease being diagnosed. Many of us have had a very long (and often frustrating) journey to get here.
How my PsA was diagnosed. I'd had sore feet for a couple of years. Orthotics didn't help. Then an x-ray showed erosions, and I ended up seeing a rheumatologist. The rheumie did a complete examination, and looked at my fingernails and said "this looks like psoriasis". "This" was slight ridging, as well as a couple of nails lifting a bit. The dermatologist agreed. Voila, I have PsA, and not only that, I have psoriasis too.
My retrospective story starts, I'm guessing, about twenty years ago. I was chronically achy and tired. Family doc, after a bit of puzzling, suspected fibromyalgia and sent me to a rheumatologist. He was a horrible man, who said it wasn't fibro, because I didn't have pressure points, and he thought it was depression. All in my head, you see. Antidepressants helped, but I still had aching and fatigue. The only helpful suggestions I ever got was to lose weight and exercise more, but that didn't seem to make much difference. Oh yes, and I had toenail "fungus" that defied several anti-fungal treatments. My joints would do funny things too, like my knees would swell and then the swelling would go down. X-rays and blood work showed nothing. I also remember once puzzling the docs once with one inflamed big toe. They never figured it out (the closest they came was gout, which they admitted was a ridiculous suggestion), and it never returned. But I now know it was probably dactylitis. Then my knees started to head south (keep your weight down! strengthen those quads!), and within five years, I had two knee replacements. That was called osteoarthritis (if only I had lost weight and exercised more!) until my rheumatologist said she was pretty sure my titanium knees are compliments of PsA. Like you, I knew something was brewing, and I knew it for a long time. During my painful feet years, when I was chronically exhausted, I often said "something is wrong with me!". By the time the rheumatologist said I had PsA, it was almost a relief to know that what ailed me wasn't a result of a lack of willpower or because I was lazy or carrying some extra weight.
I am still coming to terms with the fact that this is a condition which I will have to contend with for the rest of my life. Quite a challenge, as you well know.
I'm sure there will be lots of other stories!
Seenie
Sheesh, Seenie. Your story really does emphasizes how subtle an illness PsA can be and how difficult diagnosis can be when the disease is so subtle. And Seenie, your story scares me because it's almost identical to mine and yet I have no PsA diagnosis...I thank you so much for posting your story because there will be people with PsA who just don't know and who aren't sure, and your story will help them. I know I will be much more vigilant in watching for more signs and being proactive if they arise.
Thank you.
Hi, Breckstar, me again! I just came across Gilth's story. Like me and many others, he had years and years of clues and symptoms (in retrospect) and finally a recent diagnosis. Interesting.
I think the mods should put a sticky on this thread so that we can collect the journey stories in one place. Reading that it's also taken other people many years to get a diagnosis, and that they've also had so many missed symptoms and clues, has helped me shake some of my anger. I'm not the only one who went undiagnosed for so long. Yes, this disease is a slippery one.
Best wishes to you. Keep in touch.
Seenie
Thank you for sharing. I am totally blown away by what I am reading. The stories are a bit different but yet the same. How ironic that I have seen the doctor for crazy stuff like: random joint pain-knees (had steroid shots and told not to run), C5 disc replacement (told too much weight lifting for older woman), shoulder and neck pain (old and have arthritis which is normal for my age so they say), hand stiffness, elbow pain (stop lifting weights-again), and last but not least i have suffered for years for TMJ and was told to stop being so stressed.
I can go on but point is - story sounds so much the same. Keep sharing folks. this has clarified much for me and I know for others. Bless you
33 years ago we were on a family vacation in New Hampshire and my ankle swelled up. We assumed I'd twisted it, iced it, and wrapped it in an ace bandage. The next day it felt fine, but my mom wouldn't let me walk around the lake with my sister and father. I was four years old. Throughout my life, I've had periods of time when my joints would swell, I experienced extreme fatigue, etc. My doctors chalked it up to growing pains. I had surgery on both knees my junior and senior years of high school due to chondromalacia patella. When I was in my early twenties, my symptoms were particularly bad, but still I never got a diagnosis. Then I got pregnant with my first. Throughout the pregnancy, I felt amazing. I hadn't felt that good in years. A couple months after giving birth, my health started going downhill - joint pain, exhaustion, etc. Then I got pregnant, and felt better. I went downhill between each child, and then would get pregnant and feel better. After giving birth to my fifth child, I went downhill quickly. Test after test revealed nothing. I finally got a hypothyroidism diagnosis. A year later, still trying to find a levothyroxine dosage that worked for me, I lost most of the range of motion in one of my ankles and a lot of range of motion in my other ankle overnight. I was referred to a rheumatologist and had to wait nearly three months for an appointment. By that time both ankles, toes on one of my feet, my hands, back, and neck were incredibly painful. Oh, and my knees, but I'd been told after the surgeries in high school that I'd need total knee replacements by age 25, so I just thought it was my knee issues. I walked out of the rheumy's office with a preliminary PsA diagnosis that was confirmed with further testing. I went from hiking with my family to using 2 canes or a wheelchair in three months. My rheumy couldn't believe I'd walked into his office my ankles and feet were so bad.
For me I didn't even know I had psoriasis. My doctor said that's what caused my PsA. I thought it was just rough skin on my elbows. But my journey with it happened very rapidly. It started with in the mornings I had a hard time walking down the stairs because my ankles hurt and got weak. Then it traveled to my knees and had trouble even leaving the couch. This all happened in a matter of a few months. I had a feeling it was arthritis and one night I was in such pain I went to urgent care. She ran some blood work and found out that something was wrong with my autoimmune test. She referred me to a rheumy and that was it. He started me off on just Plaquenil and it didn't work. So I'm going to try to convince him to give me Enbrel. My pain is so bad that I cant sleep or even relaxing anymore is painful. But I'm going to the gym which helps me feel better during that time. This site has helped me tremendously because not many other people understand.
Welcome, I know you will find the support here you need!
Hi Breckstar! I'm new here. Thank you for asking this question, it feels good to be asked and be able to share our stories with those who get it!
My PsA started off as Psoriasis, I had a motorcycle wreck that earned me some road rash, yet it never healed. I finally went to a Dermatologist who immediately had an answer for my skin ailment and, after a couple starter meds, prescribed Raptiva which cleared it right up. Yey
And so the pain begins....One morning I woke up with a swollen hand and it just kept swelling, double it's size. A trip to the ER earned me a cast for my "broken hand." bad bad bad idea to cast a swelling hand so I cut that sucker off as soon as my fingers turned purple. it just kept swelling on and off for a few months - Then I experienced some intense pain in my hip, I stood from bed and hit the floor, I couldn't walk - at all. Living alone, I mastered the low crawl. Another trip to the ER in which I spent 17 hours waiting for an answer, mostly because I refused to leave until I had an answer. I just got more pain meds and a nifty hand splint. Finally, I convinced the ER docs to call my dermatologist, who's actually a PA, because she seemed like a genius to me. She immediately knew I had PsA. because she's a genius...and she did some tests. She told me that Raptiva had some rare side effect that creates some horrid PsA symptoms. o'boy It did!
I see that most have had to wait years for a diagnosis or are still waiting and I thought the few months of not knowing were torturous for me. I guess I'm lucky to have found out early. if it's possible for anything about this disease to be lucky!?! Here I am 7 years later and I really haven't come to terms with it yet. The only break from pain I have had was during pregnancy which suppresses the immune system but then I had to deal with being prego. I did score a pretty awesome kid out of the deal though :)
Well, my journey started with what I called "DRY SKIN" on my elbows & knees some 15 years ago. Then about 6 years ago came the sciatica & horrible pain in my feet. My podiatrist said I had heel spurs & gave me an orthotic. But about 3 years ago I went through a divorce. I went from a stay at home mom to a working mom. I was always so tired. Chalked it up to my new role as a single mom. Till one winter day as I came home to our then basement apartment I slipped on the snowy step & fell. I was in horrible pain. Of to the doctor. Then stared the diagnosis coming. First was the Hashimotos & arthritis. So then I went to a rheumy who said I had osteo & PsA. I later was diagnosed with Sjogrens syndrome. I was never one to go to a doctor and so my diagnosis may have taken longer then others. It has not been fun but at least I have the answers and know I am not crazy. There is actually a reason for my being in so much pain and being tired ALL THE TIME. I have two daughters that I lecture all the time to be aware of the autoimmune issues. I do not know if my mom or grandma had this........they were never told of this to my knowledge. So all's I can do is fore warn my own kids & my grand kids. Our stories have many similarities, that is why I felt I was at home as soon as I found this group. I felt so understood and a place I could come where people knew I was not "imagining" anything.
So I hope you read all our stories & see some of yourself in all of us so you too will feel connected. Keep us updated to how you are doing.
These stories all have some common threads, don't they? PsA can be tricky to dx. I've had Psoriasis since age 17 and always had strange joints that would click and my knee would pop out of place. I did not have too much pain, it was intermittant and short-lived then. I was physically active and did gymnastics. In college, I noticed more aches, but chalked it up to a slightly more sedentary life. In my mid 20's I did complain to a gp about increasing joint pain in hips and knees. He mentioned psoriatic arthritis, but since my symptoms were not severe, he only tested for RA factor and sent me on my way. I never thought about it much and just figured it was part of getting older. I'd never heard of PsA before. After having 2 kids the joints were getting worse, but still managable. Fatigue was getting ridiculous, but I thought it was mommyitis, and stress of dealing with special-needs at home. The GP agreed though did test for RA. None of my RA tests were positive. Now I'm 47, and last year I single-handedly staged a four-bedroom home, including painting, and packed nearly 20,000lbs of household items to move out of state with due to my hubby's job relocation. Ironically, my psoriasis had "gone into remission" at the time and my joints were not too horrible. I had morning stiffness, and walking pain with the hips, but I was working myself at an insane pace. We moved in Jun 2011 and I unpacked for 2 weeks straight and did fine. My joints were really getting worse though and I started having to find more comfortable ways to sleep, such as on the couch. My asthma was flaring too so I thought I'd get a new gp and get some answers about the joints and fatigue too. My right hand was swelling up as well. He did much testing that came back negative, but then sent me to a rhuemy since the psoriasis had returned at this point, and he suspected PsA. By Feb. the flare was so bad I was having difficulty walking normally and was taking daily naps (something I'd never ever done). The rhuemy dx'd me with PsA. 12 weeks of Mtx did not work, so I've taken my first dose of Enbrel this past Friday. I am hopeful.
Thank you for mentioning your need for naps. I have NEVER been a nap person, but seems I cannot make it thru an entire day without a power nap. thank God I work at home. So my daily 30 minute lunch is now a power nap. Otherwise I don't think I would make it the entire day. Sad but true...
breckstar, I totally agree with you. It's the only way I can make it through. I have tried going to bed earlier and it does not seem to make a difference. I ALWAYS seem to need a nap. But it is nice to know we aren't alone and its not because I am just lazy.
hello! I am new and this is the first time i am responding, so what better reply than that of my story with PsA! In comparison to everyone else’s stories I guess waiting about a yr and 1/2 isnt so bad for a diagnosis. I was 22 and started having pain in my left middle finger that would not go away no matter how I tried to ignore it. For a while before this, I had very bad dandruff, which of course, turned out to be the psoriasis. I also developed a small scaly patch on my arm but never thought it was related to the finger pain. What complicated my diagnosis the most is that I did not have any form of insurance and it was not until I began grad school that i was able to finally tell a dr. about my symptoms at the student health center. By this time, I had already done extensive research and was suspecting PsA mostly because I was studying public health and know a lot about medicine. thankfully, the dr was great and listened to my suspicions. however, all of my lab work was normal, including tests for RA, except for my sed rate (the inflammation marker). The only visible signs were my very swollen and sausage like middle finger and my dandruff. Not being able to offer me anything else at the student health center, he ran a ton of xrays, which showed nothing, and sent me home with a referral to the county hospital and naproxen. I never even heard back about my referral and ended up paying for insurance out of pocket because I couldn’t stand the fatigue and pain that had now spread to all my other joints. I finally got an official diagnosis last year and am still trying to find the right combo of meds to give me relief. My psoriasis is practically gone and under control but the arthritis is as bad as ever and lately my hip has been acting out on a daily basis.
Mine all started 7 1/2 months ago. Started to feel tired and run down. Doc said oh your RA count is elevated let’s get you into a rhumey. Called in January of 2012 and the next avaiable appointment was in August. So each month my joints started to hurt and swell. One by one they started to give way. In May my ankle started to hurt, doc put me in boot. (a big no no) did not get better so they did an MRI and showed inflammation but no damaged to bones, etc. Did gout test, yes positive so went on meds. Ankle swelling left but still very painful. In June started to get patches on leg and dermatologist did a biopsy and came back psoriasis. Started me on Mdx and folic acid. Changed anti-inflammatory. Later part of June my shoulders started to swell and not able to lift over head. Nothing showed on mri but tendonitist. Now hands and wrist are all tender and hand doctor said the same thing as the shoulder doctor. The ortho drs all agree that I have no bone or joint damage just pain in tendons. Internist told me two weeks ago that he feels positive the rhumey will start me on something and I should respond well. If rhumey does nothing the internist is going to take over. As of today, I do nothing but exist. I do not drive, cook, clean or do laundry all due my hands and shoulder problems. I basically exist. Next week is my rheumy appointment, after waiting 7 1/2 months, so I am anxious to see and hear what he says.
Oh by the way, I changed internist due to a personnel problem and did not like how she did not fight for me.
Hi Pamela Corini, I find it does not get better. There are days that are better then others. But you are never 'better'. I find the more I exert myself the worse it is. Most people who do not have PsA do not understand this at all. Maybe you should take your husband to the doctor with you and that will help you husband understand a little better. Also literature about PsA may be helpful. As for if you should continue working......my best advice to you is to listen to your body,it will tell you what you need to do.
Hello there, I can't really state when my PsA began..........psoriasis since I was 12, general aches and pains especially tendons from my early 20's, but my blood work always came back clear, no raised inflammation markers nor rheumatoid factors so my GP generally drew a blank and supplied me with various anti-inflammatories from around 7 years ago, until the pains in my feet, hands, shoulders was so bad I was struggling at work and at home. I was referred to the rheumatology dept. and, althrough my blood work was still clear, PsA was diagnosed through a process of elimination. One of the doctors explained that PsA can be a "zero serum condition" which means the blood work comes back clear even though there is obvious swelling, pain and restricted movement. But by far the worst symptom for me has been the overwhelming fatigue, Many days I'm back in bed by noon! and have had to be off work for 4 months at the start of treatment a year ago (Methotrexate) as I just couldn't cope...........but you can work out some ingenious ways to get around problems and my occupational therapy department are fantastic with the support and encouragement they give.............just don't give up don't let it beat you, yes! your life has to change but you are not alone. the best advice I can give is: do not be hard on yourself! do not berate yourself for not being able to be as you were, treat yourself like you would do others with sympathy and empathy.............its easy to show to others but not always yourself Even my Rheumatology Consultant does not really recognise the fatigue I suffer and suggests I take more exercise!? I do swim and do Shibashi Tai Chi at home when I can but, I do work and run a home! but often I'm in bed by 8 if I can make it up the stairs!
Good Luck xxxxx
It depends on your job. If you have an office, close the door and take a snooze at your desk if you need to. As for your question about the fatigue, I cannot say. This has been my worse year for it. I think that the major flares are likely accompanied by greater levels of fatigue. This is compounded by side effects of the medicines which also can add to fatigue. Hang in there. I take naps now when I can and no longer feel guilty about it. I feel it best to listen to your body. If it says to rest and you are able to do so, do it. My hubs doesn't quite get it, but half the time he's out of town anyway and I have to just deal with it on my own anyway. The kids are fairly understanding most of the time. Blessings for wisdom to you in your decision about work. That's a tough one and a decision you don't necessarily want to make without consulting your spouse, doctor, and one you don't necessarily want to make when you are feeling your worst.
Pamela Corini said:
How can I get a nap when I am at work? I am exhausted and have a husband not getting this whole thing......He is always wondering why I fall asleep sitting up.....ah because I am tired. Does the fatigue ever get any better ???? I need to make a decision soon about work it takes me the wk end just to rest after working Thurs and Fri. Is it worth it ?????
Yep, sometimes the fatigue seems worse than the pain I think. Before dx, I'd been tested twice for Epstein Barr (Chronic Fatigue Virus) which came back negative each time. I just couldn't figure it out. I was not at the point of taking naps, but I sure felt like it. Now, I literally have NO choice. It is Nap or Fall Down some days. I understand. Hugs and blessings from one who knows. :)
Louise Hoy said:
Hello there, I can't really state when my PsA began..........psoriasis since I was 12, general aches and pains especially tendons from my early 20's, but my blood work always came back clear, no raised inflammation markers nor rheumatoid factors so my GP generally drew a blank and supplied me with various anti-inflammatories from around 7 years ago, until the pains in my feet, hands, shoulders was so bad I was struggling at work and at home. I was referred to the rheumatology dept. and, althrough my blood work was still clear, PsA was diagnosed through a process of elimination. One of the doctors explained that PsA can be a "zero serum condition" which means the blood work comes back clear even though there is obvious swelling, pain and restricted movement. But by far the worst symptom for me has been the overwhelming fatigue, Many days I'm back in bed by noon! and have had to be off work for 4 months at the start of treatment a year ago (Methotrexate) as I just couldn't cope...........but you can work out some ingenious ways to get around problems and my occupational therapy department are fantastic with the support and encouragement they give.............just don't give up don't let it beat you, yes! your life has to change but you are not alone. the best advice I can give is: do not be hard on yourself! do not berate yourself for not being able to be as you were, treat yourself like you would do others with sympathy and empathy.............its easy to show to others but not always yourself Even my Rheumatology Consultant does not really recognise the fatigue I suffer and suggests I take more exercise!? I do swim and do Shibashi Tai Chi at home when I can but, I do work and run a home! but often I'm in bed by 8 if I can make it up the stairs!
Good Luck xxxxx
Hello Breckstar
I’m new to this disease. I started with symptoms exactly a year ago with bursitis on my hip. At the time my doctor did think much of it and sent to physical therapy. A month later my wrist and shoulder. It was all dowm hill from there. The pain in my body, the swelling on my feet, the test with no clear diagmosis. I was finally diagnosed with RA. I changed rheumy and he diagnosed with PsA. Through all this, I started seeing a Chinese doctor. He treats me with herbal teas. He doesn’t mess with meds. The change I noticed an improvement on is the fatigue. I finally had the energy again. I’ve beem seeing him for 5 months and the swelling is almost gone. If you can find one, I strongly recommend it. He’s in Encinitas, CA. Good luck!!