Looking back on it, what got in the way of your PsA diagnosis?

General
1

Over and over we get new members who tell about the years they suffered, the doctors who ignored their complaints, the specialists who completely missed the mark, and the ones who misjudged the severity of their disease. Of course, lots of factors contributed to our not being diagnosed in a timely fashion, or our being diagnosed completely wrong. Those setbacks have cost some of us dearly.

If you had to identify the factors that contributed to your delayed or incorrect diagnosis, what would you say?

2

In my case, let's see:

  • A GP who, for about twenty years, didn't recognize my treatment-resistant toenail "fungus" and my dry, flaking skin as psoriasis. She could do with a dermatology refresher course.
  • My reluctance to complain about things that seemed minor at the time, compared with the "truly ill" people in the waiting room.
  • Menopause, that convenient scapegoat for all that ails us women. (Really, what would docs do if they couldn't blame "it" on menopause?)
  • My insanely high tolerance for pain. My legs hurt. My feet ached. I was tired. In retrospect, I should have been in screaming agony, and unable to get out of bed.
  • The GP's always having a facile solution, usually involving something that's my responsibility. Eat better. Put lotion on. Exercise more. Get new orthotics. Use bath oil. Lose weight. Pace yourself. Get new orthotics. Blah blah blah. After a while, I quit asking. After all, it was my own fault if I couldn't be perfect.
  • A lovely rheumatologist who was very quick and efficient, but whose only way of gauging my disease was with my swollen finger and toe joint count.

I'm sure that I'll think of more as I go along.

So what factors messed up or delayed your diagnosis?

3

So, Seenie, the little boxes...are they purposeful or still random? (grin)

On November 10, 2005, Paul came home from Iraq. Exactly a week later, I was in my GP's office with an infection (and I did have one). Problem was, I was ill from November 17 until sometime in May, when with an elevated SED rate and a diagnosis of polymyalgia rheumatica (because I only had arm pain), I began Prednisone for six weeks. I felt better. For a while.

In 2007, my knees began hurting. Went to an orthopedist who did x-rays and said yep, arthritic changes. Lose weight. No blood work, no SED rate. Nada.

From then until 2009? I begin to be unable to stand for long periods (including during an oral argument) and then begin having trouble sitting in some chairs. Also now having trouble walking. I'm reluctant to talk about it to anybody because I don't want to complain because 1) as a kid, I was never allowed to, even with serious stuff; 2) I did NOT want to be seen as a complainer like my mother and grandmother were. SED rate high; still diagnosed with polymyalgia and periodic steroids. Somewhere in here, I talk to my GP about PsA and begin sulfasalazine but I don't stay with it. Paul wants me to go to a specialist; I won't because I'm afraid I'll get told the same thing the orthopedist told me.

2010--Sick from sometime in the spring until sometime in October (I thought it was stress from back to back to back horrible cases in addition to supervising seven attorneys); able to stand for even shorter periods, having trouble sitting in more chairs. I'm reluctant to talk about it to anybody because I don't want to complain because 1) as a kid, I was never allowed to, even with serious stuff; 2) I did NOT want to be seen as a complainer like my mother and grandmother were.

Sometime this year, I have my first bout of left shoulder trouble (Paul remembers us talking to the doc about adduction and abduction in that arm/shoulder), prescribed muscle relaxers but no x-rays done. Fatigue begins and grows worse. Still not talking even though I was worse than I wanted anyone to know. Late this year (I think) is where I'm down to going to work and coming home because that's all I can manage. October=big dose of steroids and taper. Feel better. For a while. Paul wants me to go to a specialist; I won't because I'm afraid I'll get told the same thing the orthopedist told me. He's grows ever more frustrated. I begin sleeping on the couch because our bed is just too painful for me to get any sleep at all.

2011-Even more arm trouble, even more leg/knee/foot trouble. more trouble standing, sitting, more trouble with fatigue. Sometime this year is when I go to a prison visit and I can't walk the distance from the parking lot to the headquarters building (two different prisons). Still not mentioning what I should have. Paul wants me to go to a specialist; I won't because I'm afraid I'll get told the same thing the orthopedist told me. He's even more frustrated. I'm still on the couch.

2012--I'm worse. September 24, 2012--FINALLY find Dr. Abbas, am properly diagnosed and begin treatment.

What is that? Mostly me?

4

For me, it was my own fault. Looking back, there were so many aches and pains and fatigue that I just thought were normal aging. If I did mention it I'd make light of the symptoms and I'd refuse pain meds or muscle relaxers. I just didn't even think PsA was a possibility, and when the doctor did start telling me I had it, I'm like, it's not a very serious case, right? And the rheumy said mine was probably going to continue on a slow path so I kept holding out, trying to be tough--visiting my rheumy as seldom as possible (once a year). Finally, I'm sure he was seeing the overall swelling and the worn out look on my face and my sore shoulders, elbows, wrists, hands, back, feet and weakness in my legs and arms and started telling me I should try sulfasalazine or mtx. Oh yeah, and the fact that I was getting back therapy on a regular basis. I wanted to push through it all really with the hope that it would just go away without any strong meds. Seenie, I definitely have the high pain threshold, too. And, a huge fear of meds.

God I'm glad I finally gave up the fight and went for Enbrel. I'm really lucky my damage isn't more severe, considering how long I had so many symptoms.

5

I would say doctors' prejudices are in there for sure, especially some of the crack-pot theories about psoriasis in which presumed lack of hygiene loom large. Menopause too, but I colluded .... I assumed feeling like death warmed up was all down to menopause. So I guess I need to add denial to the list.

I've had intermittent symptoms most of my life, but of course prior to middle-age I was too young to have anything much wrong with me. I think that covers most decades!

There is one very specific thing that delayed diagnosis. My left knee swelled up about 2 years before diagnosis for a few months and then again about 18 months beforehand. The second time it stayed swollen until I started Humira nearly 4 years later. As the swelling became persistent I started to feel more and more unwell. But with just one knee affected nobody considered inflammatory arthritis. I raised the possibility of rheumatoid arthritis but both the GPs and the Orthopaedic consultant said that RA was invariably symmetrical (which I now know isn't so). PsA wasn't even on the radar. Once the other knee got involved then inflammatory arthritis was finally suspected. Even then there were more obstacles ahead. But I wonder whether anyone else has come up against the 'symmetry clause'?

6

For me PsA always seemed to get in the way of diagnosis...such a slippery thing....hiding for my drs appointments only to emerge again from hiding a fee days later,... ha ha :-)

7

I had pain and fatigue for as many as five years. I went to doctors who would always explain it away for other reasons like I needed to lose weight, or I did not exercise enough, or I was a smoker. Then I quit smoking, I lost 40 pounds, and I started working out 4 days a week and I felt really good for a short time. Then I was back to pain and fatigue. I knew something was not right my bras left bruises my socks left indentations and my clothing felt tight despite the weightloss. Now I know I was so inflammed. I was misdiagnosed because many drs. when I asked about psoriatic arthritis just looked at my hands and said no. If they looked at my feet they may have known. My toes were swollen but they looked like that for as long as I could remember so I just thought I had really fat little piggies. I was told as a teenager that my toenails were fungus so I ignored that too. I was told I had osteoarthritis in both hips at 36 kind of strange and told to take an NSAID I did for awhile but it didn't help so I started the ignoring of symptoms. The doctors never had answers and never helped anyway. I had pain in my feet for years and tried all kinds of insoles and orthotics I bought in stores they worked fo awhile. Then the pain and fatigue just took over my chest hurt my pelvic bone got so bad my husband and I could not be intimate my tailbone my neck feet ankles fingers just about everything hurt. I went to a urologist because my pcp said all my pain was my kidney stones and newly diagnosed kidney disorder. He said my pain was from dr inking too much water but yet also said my blood work was off because I was dehydrated. I had an er pa who basically said I could not be in pain because my kidney stones were non obstructing and her kidney stones were much worse and she did not have pain. She acted like I was a drug seeker. I had three er visits with pain in multiple areas they could not figure out. Gastroenterology checked me for celiac I had an endoscopy and colonoscopy on the same day because the er found inflammation in my bowel that they said was gastroentrritis. Then I had two lumps in my breasts mri lit up and I needed a biopsy. I was starting to think I had breast cancer that spread to bone especially since I had pain in the pelvic area and breast bones it took abut two months when all was said and done to be checked out ok but still pain fatigue and no diagnosis. Then on to rheumatologist where it took about another month for diagnosis. I went straight to enbrel 4 days after diagnosis because so severe. I currently can't stand or walk. 6 weeks into enbrel and no improvement yet had prednisone two rounds but now have added methotrexate too. My misdiagnosis went on for years a lot is on the drs. but some is on me too my feet hurt for at least two years where I kept saying I should go to the dr. I was also so obsessed with a few breast lumps I have had and needed two biopsies for I was convinced they were what the problem was. Though I did ask several drs about psa they all said no. I am still somewhat in the angry stage not denial because I asked for years about this. I also have been told I have anklyosing spondylitis as well. I am also still in the process of finding out more about my kidney disorder which is supposedly really rare but my nephrologist is useless I have sent two messages since Jan. and I have still not heard back. I know I need to do something else about it but am so drained by this 7 month battle for diagnosis where I have gone downhill so fast. I guess my question is can a flare last this long? Will I ever improve? Or do some people not get better? I have hope but I am also very scared.

8

Scienceteach, you have had the lion's share of pain--related to and unrelated to PsA! :-(

Everyone's story is a sad saga of off and on pain and symptoms either we or our doctors wrote off as ordinary and possibly temporary and no cause for concern. Those of you who don't have noticeable psoriasis really have a hard time getting diagnosed with PsA. I guess that's understandable, but how frustrating it must be when the so-called experts can't put a label on it, so instead just write you off as pill seekers or whiners. That's such a universal attitude doctors seem to take (sorry, I don't mean ALL doctors--but, unfortunately, many of them), although I think in recent years doctor attitudes have been improving. Do you think it helps that we all have so much access to information through the internet now we can arm ourselves with that and doctors can hardly avoid giving us a more accurate diagnosis?

When you mentioned the doctor saying their kidney stones were worse than yours I recalled when I was in the process of passing a stone, not knowing it. I had labs for my physical the day before so when I called the clinic about the unusual cramps I was having the nurse told me there was a little blood and bacteria in my urine and they were sure it was a bladder infection, so to pick up the antibiotic they ordered. I tried to insist I knew what a bladder infection felt like and this was different. A couple hours later I was in the ER, urine was dark reddish brown and I was sweating and nauseous and doubling over from the pain. End result was a 3mm stone I caught a couple hours later at home.

Same thing with a weird dizziness I woke up with once about 5 years ago. I was so dizzy the room wouldn't stop spinning. My daughter drove me to the clinic and I was seen by a P.A., Kathy K., who first said this must be an ear infection, but found my ears were clear so ruled that out. She was stumped--suddenly nausea came over me really strong--the only other time that had ever happened to me was when I had the kidney stone!!! I said I can't function with the room spinning like this and she said she was dizzy for three months once with ear issues and went to work every day! I was so p.o.'d she was pretty much telling me I was a baby that couldn't handle a little dizziness! Luckily, mine, whatever it was, only lasted a day, but boy was that scary and boy will I NEVER allow Kathy K. an appointment with me EVER again!

My husband once told me I make the mistake of going in and not stressing how bad things are, and doctors don't realize how big the problems are. But, for over a year now, he's been having all sorts of pain and various swollen joints, and other than saying it's chronic gout--which some of it probably is--they are not coming up with an accurate diagnosis, and he has disabling pain that comes and goes (goes because he gets prednisone bursts for it) but his rheumy (my same rheumy) said he's never had a married couple with both having PsA, so didn't think that was the problem. Even though my husband 's dad and a couple brothers had psoriasis and he has some weird spots he's always scratching!!! We WILL get to the bottom of this, but I can see where he and all of you get so frustrated having severe symptoms that aren't diagnosed correctly until you've suffered for too long!


Scienceteach said:

I had pain and fatigue for as many as five years. I went to doctors who would always explain it away for other reasons like I needed to lose weight, or I did not exercise enough, or I was a smoker. Then I quit smoking, I lost 40 pounds, and I started working out 4 days a week and I felt really good for a short time. Then I was back to pain and fatigue. I knew something was not right my bras left bruises my socks left indentations and my clothing felt tight despite the weightloss. Now I know I was so inflammed. I was misdiagnosed because many drs. when I asked about psoriatic arthritis just looked at my hands and said no. If they looked at my feet they may have known. My toes were swollen but they looked like that for as long as I could remember so I just thought I had really fat little piggies. I was told as a teenager that my toenails were fungus so I ignored that too. I was told I had osteoarthritis in both hips at 36 kind of strange and told to take an NSAID I did for awhile but it didn't help so I started the ignoring of symptoms. The doctors never had answers and never helped anyway. I had pain in my feet for years and tried all kinds of insoles and orthotics I bought in stores they worked fo awhile. Then the pain and fatigue just took over my chest hurt my pelvic bone got so bad my husband and I could not be intimate my tailbone my neck feet ankles fingers just about everything hurt. I went to a urologist because my pcp said all my pain was my kidney stones and newly diagnosed kidney disorder. He said my pain was from dr inking too much water but yet also said my blood work was off because I was dehydrated. I had an er pa who basically said I could not be in pain because my kidney stones were non obstructing and her kidney stones were much worse and she did not have pain. She acted like I was a drug seeker. I had three er visits with pain in multiple areas they could not figure out. Gastroenterology checked me for celiac I had an endoscopy and colonoscopy on the same day because the er found inflammation in my bowel that they said was gastroentrritis. Then I had two lumps in my breasts mri lit up and I needed a biopsy. I was starting to think I had breast cancer that spread to bone especially since I had pain in the pelvic area and breast bones it took abut two months when all was said and done to be checked out ok but still pain fatigue and no diagnosis. Then on to rheumatologist where it took about another month for diagnosis. I went straight to enbrel 4 days after diagnosis because so severe. I currently can't stand or walk. 6 weeks into enbrel and no improvement yet had prednisone two rounds but now have added methotrexate too. My misdiagnosis went on for years a lot is on the drs. but some is on me too my feet hurt for at least two years where I kept saying I should go to the dr. I was also so obsessed with a few breast lumps I have had and needed two biopsies for I was convinced they were what the problem was. Though I did ask several drs about psa they all said no. I am still somewhat in the angry stage not denial because I asked for years about this. I also have been told I have anklyosing spondylitis as well. I am also still in the process of finding out more about my kidney disorder which is supposedly really rare but my nephrologist is useless I have sent two messages since Jan. and I have still not heard back. I know I need to do something else about it but am so drained by this 7 month battle for diagnosis where I have gone downhill so fast. I guess my question is can a flare last this long? Will I ever improve? Or do some people not get better? I have hope but I am also very scared.

9

Good question. My list is lonnnnnnnng and I’m not sure it’s even complete, since I’m still waiting to see the ‘experts’ and there are symptoms that may or may not be part of my PsA…

  • A period of very significant stress just before I became ill - many of my symptoms were put down to this (and stress may in fact have caused some of them - or my PsA - who knows);
  • My age (mid 40s at the time) and GPs’ attitudes - they were very ready to dismiss many of my symptoms as ‘peri-menopausal’;
  • My weight - my joint pain was certainly attributed to this;
  • Presenting first with joint pain that was diagnosed as ‘moderate osteoarthritis’ and considered ‘early’ but seen as something that ‘just happens sometimes’;
  • Previous diagnoses of osteoarthritis and hypermobility syndrome, which could explain many of my symptoms;
  • A whole load of symptoms that come and go, and didn’t present simultaneously for a long time, so the ‘big picture’ was missed (by me as well as doctors);
  • Apparently I have a less usual form of psoriasis, inverse psoriasis (though I am still waiting to see a dermatologist to confirm), which no one recognised. I have been investigated for a whole load of other conditions, including eczema, scabies, ringworm and even herpes, but tests were always negative and no one saw the pattern;
  • Being sero-negative: all my blood tests are within normal range;
  • A hip replacement 2 years ago (nearly) which obviously got everyone’s attention - including mine - and masked other emerging issues, especially bursitis and knee swelling and pain;
  • Pain spreading to so many places that doctors (who think rather mechanistically IMO) are inclined to think it must be all in my head;
  • Doctors not knowing much about enthesopathy at all, which I think I really clearly have, and which is the major cause of my pain, but only my GP shows any interest in this at all so far;
  • The fact that my local hospital has no permanent rheumatologists, just a string of locums. I saw a good one about 3 years ago who I reckon might have got to the PsA diagnosis sooner, if I’d ever seen him again;
  • Doctors who don’t listen or respect what patients have to say about their own health; I reckon that if I was less assertive, and hadn’t changed GPs, I’d still be undiagnosed;
  • The loss of confidence that comes from not being listened to or believed; a large part of me still thinks I’m a hypochondriac;
  • Possibly a high pain threshold. I’ve never thought of that before, but local anaesthetic doesn’t work well on me, and I have had fillings with no anaesthetic at all and a 32 hour labour with only gas and air, so maybe that’s a factor for me too;
  • An upbringing that expected stoicism; and a sort of expectation of ill-health: my mum was dying of cancer throughout my teens, and my dad was ill from then on… So I think maybe I just expect middle age to be like this…;
  • General fragmentation of the health service that means no one has had an overview: in the past 4 years I’ve seen 6 GPs, 3 rheumatologists, 2 orthopaedic surgeons, a surgical podiatrist, 3 other podiatrists, an orthoticist, 4-5 physios, an occupational therapist, an ophthalmologist… As far as I remember…! It’s not until I started keeping copies of all my own health notes and sort of ‘case managing’ myself that I began to build up a picture…



    I’ll stop now :frowning:
10

flow, so many things you say ring bells. I also have hypermobile joints .... or did have, that was the first thing to change. Time was I could put my feet behind my head. Also inverse psoriasis which is actually pretty common I think but yes, it eluded diagnosis as I think we've already discussed. And the high pain threshold, my one experience of normal childbirth was a breeze. And finally, the early experiences that shape our expectations. My Mum had MS when I was a child, I almost felt I owed it to her to stay fit and well. She was quadriplegic eventually so mere agonising hobbling didn't seem too bad but the first rheumy I saw put me straight on that score: 'you can't walk, this is serious'. I must admit there are some doctors whose communication and diagnostic skills have made such a difference.


flow said:

Good question. My list is lonnnnnnnng and I'm not sure it's even complete, since I'm still waiting to see the 'experts' and there are symptoms that may or may not be part of my PsA...
- A period of very significant stress just before I became ill - many of my symptoms were put down to this (and stress may in fact have caused some of them - or my PsA - who knows);
- My age (mid 40s at the time) and GPs' attitudes - they were very ready to dismiss many of my symptoms as 'peri-menopausal';
- My weight - my joint pain was certainly attributed to this;
- Presenting first with joint pain that was diagnosed as 'moderate osteoarthritis' and considered 'early' but seen as something that 'just happens sometimes';
- Previous diagnoses of osteoarthritis and hypermobility syndrome, which could explain many of my symptoms;
- A whole load of symptoms that come and go, and didn't present simultaneously for a long time, so the 'big picture' was missed (by me as well as doctors);
- Apparently I have a less usual form of psoriasis, inverse psoriasis (though I am still waiting to see a dermatologist to confirm), which no one recognised. I have been investigated for a whole load of other conditions, including eczema, scabies, ringworm and even herpes, but tests were always negative and no one saw the pattern;
- Being sero-negative: all my blood tests are within normal range;
- A hip replacement 2 years ago (nearly) which obviously got everyone's attention - including mine - and masked other emerging issues, especially bursitis and knee swelling and pain;
- Pain spreading to so many places that doctors (who think rather mechanistically IMO) are inclined to think it must be all in my head;
- Doctors not knowing much about enthesopathy at all, which I think I really clearly have, and which is the major cause of my pain, but only my GP shows any interest in this at all so far;
- The fact that my local hospital has no permanent rheumatologists, just a string of locums. I saw a good one about 3 years ago who I reckon might have got to the PsA diagnosis sooner, if I'd ever seen him again;
- Doctors who don't listen or respect what patients have to say about their own health; I reckon that if I was less assertive, and hadn't changed GPs, I'd still be undiagnosed;
- The loss of confidence that comes from not being listened to or believed; a large part of me *still* thinks I'm a hypochondriac;
- Possibly a high pain threshold. I've never thought of that before, but local anaesthetic doesn't work well on me, and I have had fillings with no anaesthetic at all and a 32 hour labour with only gas and air, so maybe that's a factor for me too;
- An upbringing that expected stoicism; and a sort of expectation of ill-health: my mum was dying of cancer throughout my teens, and my dad was ill from then on... So I think maybe I just expect middle age to be like this...;
- General fragmentation of the health service that means no one has had an overview: in the past 4 years I've seen 6 GPs, 3 rheumatologists, 2 orthopaedic surgeons, a surgical podiatrist, 3 other podiatrists, an orthoticist, 4-5 physios, an occupational therapist, an ophthalmologist... As far as I remember...! It's not until I started keeping copies of all my own health notes and sort of 'case managing' myself that I began to build up a picture...

I'll stop now :(
11

I agree can relate to a lot flow. Sometimes I thought I was a hypochondriac too. I also had more inverse psoriasis than visible and just dealt with it mostly and had docs that treated as fungal. I can also relate to being able to say more about how this was missed for so long. Now I just hope it is not too late. I keep hearing about early diagnosis and treatment is key.

12

So many of us have felt like hypochondriac nutters! While we were feeling like that, our doctors were seeing us as well people imagining that we were ill, when, in fact, we were ill people trying their best to act well.



One thing I’m seeing here is the issue of diversity of symptoms: problems with skin and nails, fatigue, bowels, eyes, joints, depression. And each one of these symptoms would suggest a different medical specialty. The joint complaints might suggest a rheumatologist, but if you are one of the 50% or so of PsA sufferers who show nothing out of the ordinary in your inflammatory markers, and especially if your joint issues aren’t symmetrical, you are more likely to be seen as a candidate for physiotherapy or orthopedics instead.



I guess you need to be lucky enough to find yourself in the presence of a doctor who knows enough about PsA to be able to ask about your skin, digestion, eyes, and mental health when you present with joint issues, so that they can connect that constellation of often very faint dots. Thank goodness there are still some of those.



So that brings up another question: what event(s) got you into the presence of the right doctor who was able to say “You have psoriatic arthritis”?



In my case, the precipitating even was the discovery of erosions in my feet. You?

13

I have to admit, I did not have this scenario. I have a long history of tendinitis, dating back into my twenties. But when my second child was nine months old, I started having these bad swellings in fingers. It would come and go within a few weeks. I also had fatigue. I went to my gp with my concerns, and she ran the full autoimmune panel as well as tested me for Lyme disease. Nothing showed up in the blood work, but she still sent me to the rheumatologist. The rheumy took a look at me, found a spot of psoriasis, and told me that I had PsA. I didn’t start a DMARD until a year later.

In terms of age, doctors should know that autoimmune disease can present at a very early age, and my situation of being in the thick of my childbearing years is classic.

14

Stoney said:

Nothing showed up in the blood work, but she still sent me to the rheumatologist. The rheumy took a look at me, found a spot of psoriasis, and told me that I had PsA. I didn't start a DMARD until a year later.

Now you probably realize how lucky you were to have have had a gp who had good instincts! One spot of something she recognized as psoriasis, along with sore fingers and fatigue, it rang a bell ... and bingo!

15

Seenie, you hit the nail right on the head "doctors seeing us as well people imagining that we were ill.....". That's another reason I hated going to the doctor with my pain! For me it wasn't as much pain as I was just feeling yucky all the time and the pain would come and go and move around and be in varying degrees. I guess a smart doctor should be able to figure that out, knowing the nature of PsA.


Seenie said:

So many of us have felt like hypochondriac nutters! While we were feeling like that, our doctors were seeing us as well people imagining that we were ill, when, in fact, we were ill people trying their best to act well.

One thing I'm seeing here is the issue of diversity of symptoms: problems with skin and nails, fatigue, bowels, eyes, joints, depression. And each one of these symptoms would suggest a different medical specialty. The joint complaints might suggest a rheumatologist, but if you are one of the 50% or so of PsA sufferers who show nothing out of the ordinary in your inflammatory markers, and especially if your joint issues aren't symmetrical, you are more likely to be seen as a candidate for physiotherapy or orthopedics instead.

I guess you need to be lucky enough to find yourself in the presence of a doctor who knows enough about PsA to be able to ask about your skin, digestion, eyes, and mental health when you present with joint issues, so that they can connect that constellation of often very faint dots. Thank goodness there are still some of those.

So that brings up another question: what event(s) got you into the presence of the right doctor who was able to say "You have psoriatic arthritis"?

In my case, the precipitating even was the discovery of erosions in my feet. You?
16

Yes, me too Scienceteach. It’s a scary thought that I may have had this undiagnosed for years and years…



Scienceteach said:

I agree can relate to a lot flow. Sometimes I thought I was a hypochondriac too. I also had more inverse psoriasis than visible and just dealt with it mostly and had docs that treated as fungal. I can also relate to being able to say more about how this was missed for so long. Now I just hope it is not too late. I keep hearing about early diagnosis and treatment is key.

17

VERY interested to hear you were hypermobile too Sybil! Before this recent diagnosis of PsA, my other emerging theory was that possibly a lifetime of hypermobility caused enthesopathy, which caused secondary joint damage… There’s nothing about this I can find in the medical literature, so I was wondering if I might have stumbled on a new discovery! :smiley: Now it seems PsA is a more likely explanation…



Sybil said:

flow, so many things you say ring bells. I also have hypermobile joints … or did have, that was the first thing to change. Time was I could put my feet behind my head. Also inverse psoriasis which is actually pretty common I think but yes, it eluded diagnosis as I think we’ve already discussed. And the high pain threshold, my one experience of normal childbirth was a breeze. And finally, the early experiences that shape our expectations. My Mum had MS when I was a child, I almost felt I owed it to her to stay fit and well. She was quadriplegic eventually so mere agonising hobbling didn’t seem too bad but the first rheumy I saw put me straight on that score: ‘you can’t walk, this is serious’. I must admit there are some doctors whose communication and diagnostic skills have made such a difference.


flow said:

Good question. My list is lonnnnnnnng and I’m not sure it’s even complete, since I’m still waiting to see the ‘experts’ and there are symptoms that may or may not be part of my PsA…
- A period of very significant stress just before I became ill - many of my symptoms were put down to this (and stress may in fact have caused some of them - or my PsA - who knows);
- My age (mid 40s at the time) and GPs’ attitudes - they were very ready to dismiss many of my symptoms as ‘peri-menopausal’;
- My weight - my joint pain was certainly attributed to this;
- Presenting first with joint pain that was diagnosed as ‘moderate osteoarthritis’ and considered ‘early’ but seen as something that ‘just happens sometimes’;
- Previous diagnoses of osteoarthritis and hypermobility syndrome, which could explain many of my symptoms;
- A whole load of symptoms that come and go, and didn’t present simultaneously for a long time, so the ‘big picture’ was missed (by me as well as doctors);
- Apparently I have a less usual form of psoriasis, inverse psoriasis (though I am still waiting to see a dermatologist to confirm), which no one recognised. I have been investigated for a whole load of other conditions, including eczema, scabies, ringworm and even herpes, but tests were always negative and no one saw the pattern;
- Being sero-negative: all my blood tests are within normal range;
- A hip replacement 2 years ago (nearly) which obviously got everyone’s attention - including mine - and masked other emerging issues, especially bursitis and knee swelling and pain;
- Pain spreading to so many places that doctors (who think rather mechanistically IMO) are inclined to think it must be all in my head;
- Doctors not knowing much about enthesopathy at all, which I think I really clearly have, and which is the major cause of my pain, but only my GP shows any interest in this at all so far;
- The fact that my local hospital has no permanent rheumatologists, just a string of locums. I saw a good one about 3 years ago who I reckon might have got to the PsA diagnosis sooner, if I’d ever seen him again;
- Doctors who don’t listen or respect what patients have to say about their own health; I reckon that if I was less assertive, and hadn’t changed GPs, I’d still be undiagnosed;
- The loss of confidence that comes from not being listened to or believed; a large part of me still thinks I’m a hypochondriac;
- Possibly a high pain threshold. I’ve never thought of that before, but local anaesthetic doesn’t work well on me, and I have had fillings with no anaesthetic at all and a 32 hour labour with only gas and air, so maybe that’s a factor for me too;
- An upbringing that expected stoicism; and a sort of expectation of ill-health: my mum was dying of cancer throughout my teens, and my dad was ill from then on… So I think maybe I just expect middle age to be like this…;
- General fragmentation of the health service that means no one has had an overview: in the past 4 years I’ve seen 6 GPs, 3 rheumatologists, 2 orthopaedic surgeons, a surgical podiatrist, 3 other podiatrists, an orthoticist, 4-5 physios, an occupational therapist, an ophthalmologist… As far as I remember…! It’s not until I started keeping copies of all my own health notes and sort of ‘case managing’ myself that I began to build up a picture…

I’ll stop now :frowning:

18

Nothing. In my case, it has been my own research plus people on forums (here and HU) saying “Hmm, that sounds like PsA” and me trying to prove the inflammation I felt but that wasn’t showing in my bloods, and repeatedly asking “Could THIS rash be psoriasis? What about THIS one?” There was enough doubt that I didn’t get discharged, then the hand ultrasound showed inflammation, then a belly button rash showed up that the rheumy agreed was psoriasis.



Seenie said:

So many of us have felt like hypochondriac nutters! While we were feeling like that, our doctors were seeing us as well people imagining that we were ill, when, in fact, we were ill people trying their best to act well.

One thing I’m seeing here is the issue of diversity of symptoms: problems with skin and nails, fatigue, bowels, eyes, joints, depression. And each one of these symptoms would suggest a different medical specialty. The joint complaints might suggest a rheumatologist, but if you are one of the 50% or so of PsA sufferers who show nothing out of the ordinary in your inflammatory markers, and especially if your joint issues aren’t symmetrical, you are more likely to be seen as a candidate for physiotherapy or orthopedics instead.


I guess you need to be lucky enough to find yourself in the presence of a doctor who knows enough about PsA to be able to ask about your skin, digestion, eyes, and mental health when you present with joint issues, so that they can connect that constellation of often very faint dots. Thank goodness there are still some of those.



So that brings up another question: what event(s) got you into the presence of the right doctor who was able to say “You have psoriatic arthritis”?



In my case, the precipitating even was the discovery of erosions in my feet. You?

19

Random, sixcat. Completely random. LOL

sixcatlawyer said:

So, Seenie, the little boxes...are they purposeful or still random? (grin)

20

I had a spot on the upper right part of my back, maybe an inch from the top of my shoulder which, every time I took a shower and dried that area, bled. I saw the dermatologist for that and also talked to her about what I now know is inverse psoriasis in my inguinal area and fatigue, difficulty in walking, standing and living. I got a compound creme for the inverse psoriasis and a biopsy for the spot.

On August 13, 2012, I went back to the doc to have a "very early, very small" basal cell carcinoma removed from my shoulder. Walked out of there with a referral to Dr. Abbas (rheumy) also.

About 10 days later, I saw Dr. Abbas, who did a very long history and physical examination and took I have no idea how many vials of blood. Walked out of there with a preliminary diagnosis of psoriatic arthritis. I went back August 30, confirmed diagnosis of psoriatic arthritis and a prescription for Methotrexate.

Seenie said:

So that brings up another question: what event(s) got you into the presence of the right doctor who was able to say "You have psoriatic arthritis"?

In my case, the precipitating even was the discovery of erosions in my feet. You?