Howdy There

Welcome Greetings and Introductions
1

Call me Weasel. Mostly because I’m paranoid that somehow my current employer or perspective employers will find this and will not want to hire me or keep me employed. Not that you can’t just look up my name in my user profile, but whatever.

Anyway, I’ve been dealing with symptoms of psoriasis since 2011 and psoriatic arthritis since 2014. I say symptoms because I’m not officially diagnosed yet. I’ve been misdiagnosed with a million different things and swept under the rug by half a dozen doctors. But I think I’m finally on the right track with autoimmune disease and finally have a good doctor, and I’m pretty darn sure (99%) that my skin problems and pain problems are PSO/PsA related. My primary care provider agrees. Just waiting on an official diagnosis from a rheumatologist, who I just started seeing the other week, so it may take some time. I’ve had one positive ANA test and everything since has come back negative, and I don’t have an active skin rash to where I can get a biopsy, so diagnosis isn’t exactly straight-forward.

I’m female and just turned 28 years old. I’ve had random joint pains and serious lower back pain on and off for at least 3 years, but only this past winter did I start getting widespread pains involving multiple joints (fingers, hands, wrists, toes, feet, knees, elbows, shoulders… you name it) and tendons which is what got me doing some research on autoimmune arthritis.

I’m pretty concerned how this is going to affect my career. I’m a scientist and do a lot of crazy things for work like snowmobiling and hiking with packs. My pain and fatigue is definitely starting to affect my performance. The past 3 days I could barely walk because of foot pain, and now I can’t bend most of my toes on the foot that hurt the worst (has anyone else experienced this?). I’m interviewing for a job up north of the arctic circle which would probably be pretty physically demanding and would also severely limit my access to good health care. Not to mention I can’t even imagine the joint pain that -40 F temperatures might cause…

I’m just coming here to this site to connect with others going through similar problems. If anyone has any advice about how to keep up with physically demanding jobs, or how to limit the progression of this disease given my age, I’d love to hear it.

Also, if anyone has advice on how to get my fiance to understand this, that would be helpful. He is of the opinion that I can just see a doctor and get it fixed. I’ve tried explaining that there’s only treatment, not a cure. He also doesn’t seem to understand that I am dealing with this on a daily basis. I love him, but overall he hasn’t been the most supportive. I plan on taking him with me to a rheumatologist appointment, after she has a better idea of what’s going on and the extent of any damages.

2

Weasel, welcome to our PsA club house. First of all, your name is not visible to the public. To us you are Weasel, and you look just like your avatar … no, I’m kidding of course. Your email address is also hidden from everyone except the site administrators and moderators, and what you say here is as anonymous as you choose to make it.

I don’t have an active skin rash to where I can get a biopsy, so diagnosis isn’t exactly straight-forward.

Oh, tell us about that! It took some of us a very long time and several doctors to finally get the name of what was making us so miserable. As for being blown off by doctors (not to mention family and friends) yup, been there too. You are in good company here.

One of our moderators, @Jen75, has experience with career conditions a bit like yours. I’ll let her fill you in!

As for how to get your fiance (and others) to understand what all of this means is a question many of us grapple with. Taking them to the rheumatology appointment is a great idea! You might also want to direct them to a site which is jam-packed with information: papaa.org.

We’re glad you’re here, Weasel, and we hope that you will be glad that you joined us as well.

3

@Seenie, thanks for the response. I’ll check out that website and direct my fiance to it.

I’m really struggling to come to terms with the uncertainty of prognosis of the disease of what it means for my life. I’m saddened by the fact that I have to think about giving up my career when I’ve worked so hard to get where I am and I still have a long way that I want to go. My career more or less is a symbol for the rest of my life. So much of what I do for my job is tied to what I do recreationally and to who I am as a person. What if this changes me completely as a person? My fiance and I have similar lives–what if it changes me enough that my fiance no longer wants to be with me? More over, it seems like it’s not a matter of what if, but a matter of when. It’s already impacting my life. Research is pretty clear that the disease will continue to progress, though we can’t know how much or how quickly.

The uncertainty is causing me so much anxiety right now, and I’ve been on a complete emotional rollercoaster since this flare up started in July. I have no one to talk to about it with. How do you all deal with so much uncertainty?

4

Hi Weasel,

Yes that one is the really hard one to come to terms with. I certainly found it very difficult indeed. However you are just at the very beginning of it all and coming to terms with it does get easier. You’ll be doing a lot better when you get to talk to the rheumatologist and get to know what her treatment plan is, that will help. The aim of that will be to limit the progression of the disease for you. Do lots of research so you undestand more. Think of possibly getting some ‘talking therapy’ if you really feel overwhelmed by what you’re worried about for the future. And keep asking us questions on here too.

5

Hi Weasel,

Sorry it’s taken me so long to reply. I really feel for you on both counts - the career and the fiancé.

As Seenie dobbed me in, I thought I’d give you some detail of my experience with career, as I realise the combination of the outdoor career and young onset is not the most common for those with PsA (though there are a few of us around). So, Apologies for the very, very long post!

The feeling I was going to lose my career was one of the hardest parts of all for me - like you, a scientist who works outside much of the time, (admittedly it’s >40deg) over here most of the time :stuck_out_tongue_winking_eye:), long days, a job I loved, and at diagnosis I was regularly traveling to the bush in West Africa.

But at least as important, all my hobbies (both for me and my parter), were active outdoor pursuits. My entire identity and how I viewed myself was wrapped up in my work and those outdoor activities - I had a two year old but worked hard and everything I did with her was outdoors too. It was a fast and rough onset in almost all my joints, and before I’d even got to the rheumatologist (referral times can be slow here - but I could barely walk a kilometer within 6 weeks), I’d started googling wheelchairs.

There is an enormous amount of loss that goes with those feelings. That can be made all the harder when you are in “the gap” between diagnosis and effective medication, and sometimes it looks like there is no light at the end of the tunnel. I see a psychologist regularly now - I wish I’d done so at diagnosis. It’s hard enough to have the loss of a loved one. To feel like you are losing yourself - well I have to admit that it made me feel hopeless.

The good news is that for most of us, effective treatment does happen. I continued to travel to the bush in west Africa for a couple of years (until a company takeover made me redundant), even in the midst of methotrexate, plaquenil, steroids, enbrel, and Humira. I’m not going to sugar coat it - it was really, really hard, and in the end I pushed too hard and probably had a bit of a physical and mental breakdown (there were some other very significant factors that also caused the mental side).

Now I have slowed down, and I’m not as physically reliable as I once was, but then again, my daughter won’t be young forever, and if there is one thing that having this disease has brought to my life that is positive - it is learning to cherish the moments we do get.

I was pretty good technically anyway, so once I was made redundant, instead of focusing on trying to re-launch myself back into hands on senior management, I re-skilled myself sideways to learn how to do some specialist technical work (in my case interpretive 3D modeling).

Now I work as a consultant, with my main client a company where the trip to site is only a few hours, with an overnight stop, instead of the three days it used to take me to get to West Africa.

I still love going to the field, but now only do so for around 4 days at a time, every couple of months. My Rheumy is happy for me to use bursts of steroids (can’t use them all the time due to SEs,) so if I have problems, I can use those for the short time I’m in the field.

I even passed a stringent medical, including Physio. When I asked them if I was ok to take my medication, they said to take whatever I’d normally take in the field - which of course included prednisone - so I was fine.

Now, I’m really happy I work part-time and have changed my focus of my work a bit. I love my job, the people are very understanding, and because I can manage my own time, I can just have a sleep in the middle of the day if I need (I work largely from home), or work when I’m feeling well and rest when I’m not. In my case, I also see a lot more of my daughter, which I love. And saving a bit of energy from work allows me to engage in those outdoor activities I love - maybe not as much as I’d like, but then I’ve always had rather high expectations.

I’m not going to pretend it’s all easy. It took some time to make the work transition, my employment and income are uncertain, and I still have difficult days. But on balance, even with PsA, I love my life more now than in the months before onset.

If you can get access to counseling - I’d really recommend it. And there’s no need to make rash decisions about anything until you’ve had a chance to get out of the gap, and see what position you are in with effective medication. There are not insignificant numbers of people that even go into remission - though of course they aren’t likely to be hanging around this forum!

There are great supportive people here, and a lot of very good information. The hardest part really is at the start, and you will get through that.

1 Like
6

Hi Weasel!
First off, I can’t begin to imagine how I would handle all that at age 28. That’s when I count my blessings because PsA really didn’t hit me hard until my mid-50s. I had some back and foot problems occasionally since my 30s more than “normal”, but nothing like the “real” PsA symptoms that are around the clock every day!
You and Jen75 sure have great careers! It would be very hard to give up something you love so much…I think Jen had a great message…

You will need to persevere, and it will be more challenging, but not impossible! When you learn of different ways to overcome some of the pain and stiffness and “push past” some of it…when you get on the right meds that can be a HUGE improvement (at times I feel Enbrel has made a 90% improvement in my PsA symptoms)…

But, no matter what, the loss of your good health is depressing and that’s something most of us struggle with. I took good health for granted–it’s hard to accept that it’s not a sure thing and our bodies can and do let us down, despite taking care of ourselves!

I do agree the brain can play some tricks on us once we get a yucky diagnosis. I was diagnosed with PsA in my mid 50s and I think since then I’ve let that rule my life! It is so hard to push it aside and “pretend” there’s nothing wrong–yet I know that by dwelling on the fact that I have a disease that’s not going away and I have these scary things happening to me and having to take a biologic that I’m not sure is harming me in another way–it makes matters worse. So, if you can, you should take Jen and Poo’s advice and get counseling because talking with an expert can probably help you steer your thoughts and feelings toward the positive. I’ve been trying to counsel myself for almost 10 years now, and it’s not been very effective! :thinking:
Good luck, Weasel, and hang in there!

7

Thanks for your words of wisdom, everyone. I’m too scared too go see a therapist before I have an official diagnosis or some lab work/imaging that definitely shows joint damage or inflammation. I’ve already got a giant stamp on my forehead reading “anxiety” that most doctors can’t seem to look past. I can’t handle another doctor telling me that this is all in my head. I will lose it.

I am realizing that there are so many things people take for granted. I can’t even hold a cup of coffee in the morning anymore without pain! I suppose in the end this will make me more grateful for what I do have and am capable of.

@Jen75, that’s really great and inspiring to hear that you can still be happy even with taking a big step down in your career. I know that I need to shift from a field focus more toward an office focus, but I am worried that I don’t have the experience level to be able to do that. The office folks in my field are usually people with Ph.D’s or that have dozens of years of experience. I just barely finished my M.S. a year ago, which I suppose puts me in a better position than no advanced degree, but there are a lot of folks with M.S. that can’t find work in my field. I guess I’ll take it day by day. I just don’t want to end of doing more damage to my joints by doing heavy field work, potentially reducing my quality of life in the future.

8

Hi there Weasel. Firstly I feel sad for where you are at at the moment, this is a difficult time for you, for sure!!! To be experiencing all of this at your age is a real bummer!!! It is no wonder you are feeling anxiety (and yes, maybe some ‘talking therapy’ might help you a little with that) you certainly have genuine reason for it.

The others have covered most things, but as I read through your thread, I had a wee thought… if you do find (and you may not) that you are unable to continue working at your current capacity might it be possible to consider using the time you are physically limited to work towards a Ph.D or similar? Perhaps the right job might be happy to support you through that… Just a thought really :slight_smile:

Also do try to keep in mind that there are effective medications out there that can make a huge difference. It’s great you are seeing a rheumy and sounds like you have an excellent GP, that will go a long way towards getting you on the right treatment sooner rather than later, which might allow you to continue on your current career path. I will keep my fingers crossed for you!!!

9

The beauty of talking therapy is that no one judges you. Indeed the only person to judge you is yourself. What gets reflected back to you is only what you’re saying to and about yourself. That actually helps as then you get to see how to change what you say to yourself. That always really helps. Believe me, although it can take some time to learn it and trust it.There’s no 'talking therapy in the whole of the western world that tells you it’s all your head and consequently you’re just doomed in the way you imagine, Weasel.

What I read from your reaction to our collective posts is that you’re in sheer panic. You don’t need to be. Yes it’s just utterly awful and no doubt too sad as well but it doesn’t stay like that forever more. Take all this from someone aged 54 then who had a year long tantrum about the whole diagnosis. I didn’t do ‘talking therapy’ about that as I had just finished 18 months worth of it literally days before I got diagnosed. But despite some forays into my default temper tantrums since, I did take all the lessons I learned in ‘talking therapy’ to heart. It so helped.

What it does is allow you to come to terms with things in a far more kind way. Kind to yourself way. It allows you to do great big sighs and cry lots but it also teaches you to build blocks to step on forward with on two feet. Those lessons in anyone’s world are just gold dust.

So while you’re either dismissing what I’ve written or finding ways to not think about it, please just know that nonetheless I’m sending you loads of virtual hugs that you find a way to make your emotions just deal better with this. As Janson said there are a whole of medications that can just give you your life back too. x

1 Like
10

@janson, maybe someday I’ll work on a Ph.D., but I think that’s too energy intensive at the moment. Good thought though. I hope the right treatment will work wonders and allow me to continue in my field.

@Poo_therapy, I’ve done CBT therapy a few times before. It’s never done much for me in the past, but I think it could be helpful this time around. I just really want to wait until I have an official diagnosis.

Thank you all for the kind words and positive thoughts. Very hard for me to stay positive right now… my fiance is “questioning our future” and won’t even say I love you anymore. He has been away working since May and is coming back in two weeks. All I’ve asked for is for him to listen every once in a while if I’m having a rough day; I do the same for him. I guess that’s too much to ask.

11

That sounds rough Weasel fiance wise. Hugs on that one. There are other types of ‘talking therapy’ than just CBT as I’m sure you know. I’ve never done CBT so I don’t know much about it. However just old fashioned psychotherapy really helped me at the time. Much depends on the therapist though and I was lucky to have one I could get along with. I do hope things get a bit better for you soon,

12

Hi there Weasel, some wise counsel above, I won’t try to better it. I just wanted to say that my brother was diagnosed with PsA in his 20’s, a very active man who used to run his commute. He has been successfully having treatment for the past 20 years and generally has a couple of years on treatment, a couple of years off, many of them symptom free. He has continued running all that time, is very active and outdoorsy. So, there is hope.
With regards your fiancé - whatever will be, will be & maybe if they can’t be supportive over this, it’s not meant to be? In sickness and in health and all that.
Try and stay positive; pain is affected by our mood, as is our general health. I’m an Occupational Therapist with PsA, so I know what I’m talking about!

1 Like
13

Completely understand how a Ph.D would seem to be far too much at this time!! Was a just a thought :slight_smile:

Yes, concentrating on getting the treatment sorted sounds like a good plan to me!! I’m sure you will be able to find something that works well for you and wish you the very of best of luck to get that quickly… it can happen :slight_smile:

I also completely understand why it is difficult to stay positive right now… As for where your fiance is at I’m afraid I don’t think I can be much help with that, I suppose this PsA thing is difficult for us to understand ourselves at times, and we are the ones who are experiencing it, for those watching on it must even harder to understand (and therefore be supportive)… I guess all you can do is show him any information you find that shows both sides but especially stuff that helps you to feel positive about the future, ie possibility of remission etc. Gaining some understanding of it all might help him to be able to support you through the rougher times… perhaps…

Wishing you the very best of treatments and pain free days in the very near future!!!

14

Had an extremely frustrating follow-up with the rheumatologist today, where she basically said that even if I have PsA it’s too “mild” to warrant any treatment. Mild? Really, mild? I understand that it’s all relative. But when the symptoms are royally screwing up my quality of life, preventing me from doing simple tasks like preparing food for myself, putting my job on the line, and causing a major fissure in a relationship of 8 years… that’s mild? If it was “mild”, would I have dropped all of my plans for the day to make a 3 hour one-way drive to see a rheumatologist for 20 minutes? Does she wake up and feel the pain that I experience all day long every day? Oh, but my ESR and SED rates are normal, and my foot xray doesn’t show any visible joint damage… so what I’m experiencing must be mild, or all in my head.

I even have active skin problems again, and she was even dismissive of that! I guarantee that if I were to post pictures, many of you would probably say that it looks familiar, just like psoriasis. But it doesn’t seem to matter anyway, because y’know, skin problems alone can’t have a serious impact on the quality of life either… they’re “mild”.

Basically everything is going to hang on my upcoming pelvic MRI… and she won’t treat me or make a diagnosis unless it shows significant sacriolitis or axial involvement.

What happened to the idea of preventative medicine? I am so hurt; apparently I am not worthy of her time.

15

Yeah. My sed rate and whatnot are all normal as well. Yet I have joint damage on imaging, have had a few surgeries to fix stuff, and have qualified for a biologic since 4 years ago. I would call back and do a phone consult if possible. You may need to spell things out. For example, when I wake up in the morning I am stiff for 45-60minutes. I can only walk a half mile without significant pain. I can no longer raise my arms above shoulder height. You get the basic idea. Spell out exactly how it’s impacting you. Were there multiple swollen joints?

I wish you luck. It’s sou frustrating to deal with this. If you don’t make headway, even with being super clear, you may want to consider a second opinion.

16

You’re right, I do need to spell it out more clearly. I’ve kept a pain log, to spell out what I’m feeling on a daily basis, and I printed it out but stupidly forgot it at home. She didn’t seem to have an interest in it anyway when I brought it up. But I should work on a separate document that spells out exactly how it’s impacting my life. I had a few notes on that attached to my intake form, but I need to be more detailed.

17

Hi Weasel, I’m sooo very sorry to hear that you had that experience with a rheumy today… how far off is the MRI?

If it’s not too far away, see how that goes, hopefully it will show something that will get the ball rolling.

There are a few ways you might be able to take this from here…
1 You mentioned your PCP is very good. Are you able to see him/her again and discuss how your appointment went with them? Why I suggest this is because it was a GP that got me started on Mtx (that sure got the rheumy’s keen to see me, when prior to the Mtx they were convinced, just on the initial referral, that I had osteoarthritis)… I think what might have guided him to start the Mtx was the fact that 40mg of prednisone daily (given for asthma) was the first time in months I had no pain in my ankles (welcome relief even if it was only for 4 days lol). Oh, by the way, my ESR and CRP where both ‘normal’ too, as were ankle and hand x-rays.

2 You mention the psoriasis is active at the moment… is it possible to get a referral to a dermatologist? Some times they can get you started on Mtx for psoriasis and refer to rheumy for arthritis too.

3 Are you entitled to a second opinion? perhaps through one of the PsA centers of excellence.

I completely understand your frustration!!! Please don’t feel that you are not worth her time… of course you are worth her time!!! Unfortunately it seems PsA can be particularly difficult to pin down, much to the distress of those suffering :sob: Don’t give up!!!

Thinking of you through what is a rough time!!! Do keep us up to date with where things go from here… Best of luck!!!

1 Like
18

I’d be a little upset if these two things were used to declare my PsA ‘mild’ too. Neither seem particularly relevant as far as I know. If you decide to persevere it may be a good idea to detail how PsA affects function rather than focusing on pain alone. It has often been said here that rheumys may not take as much notice of pain as it is such an individual and subjective symptom, but specific details of tasks and movements that are difficult or impossible my carry more weight.

I know that pain is written in capital letters in our minds, quite understandably so, but it is just so hugely variable. One rheumy told me that some of his patients may have just one affected finger and yet genuinely be experiencing unbearable pain, while patients with many swollen joints may not report much in the way of pain. He was a good 'un, I think he’d have taken the finger person 100% seriously but I can see that pain levels do not necessarily indicate severity of disease. In the past I’ve been asked to fill out questionnaires about function and they’ve been an eye opener. I started by thinking that my mobility etc. were way too good to merit such a thing but considering individual items such as reaching up, bending, lifting pots and pans, using a keyboard, standing from sitting etc. etc. etc. made me realise just how extensively PsA affects me day to day. Would definitely recommend going to any subsequent appointment armed with that very specific type of information.

1 Like
19

@janson, my PCP is booked up for the next 3 weeks. The skin lesions can wax and wane so quickly, I’m afraid that they are going to disappear by then and I’ll be back to square one on the psoriasis front. I think a referral to a dermatology is a good idea, and I got info for one that treats a co-worker’s psoriasis, but I’ll need to wait to see my PCP for that referral. And it’s another 3 hour drive to the dermatologist, which is inconvenient but worth it if he’ll actually take me seriously.

@Sybil, yes, I am arming myself with a list. There was a checklist on the intake packet, but most of the items on there were not really relevant to me. There were things on there like “I have trouble buttoning shirts,” which isn’t a problem for me, but it lacked things like “I have trouble gripping and turning a steering wheel” or “I have trouble walking for more than a quarter of a mile.” I’m not the kind of person to check the severe box, even if it causes me severe pain because I can generally push through it. So I end up being perceived as this high functioning individual when compared to others, when in reality my functionality is on sharply the decline in relation to my baseline functionality rate and mentally I feel like I can’t continue to function like this for much longer.

Even if the disease is “mild”, relative to other people with similar conditions, that doesn’t mean it shouldn’t be treated or monitored. It’s progressive; just because it’s mild now doesn’t mean it’ll stay mild. Of course visible joint damage isn’t going to show up on my foot xrays when my feet only became extensively involved in the last two months. Numerous studies have shown that MRIs and ultrasound are a much more useful tool, but the rheumatologist says she only orders xrays for hands and feet. I’m hoping my pelvic MRI (next Wednesday) will reveal more, since my lower back has been involved longer and has severely impaired my function at times. Last MRI I had (a year ago) showed arthropothy in my lumbar spine, which the doctor brushed off as normal (should someone my age really be showing any signs of arthritis in the spine?).

Thanks for letting me vent, folks.

20

Hi! So sorry for your frustrating visit. One note about what @Stoney said–I completely support her suggestion. You MUST focus on how the disease prevents normal life for you. The pain log is not going to sway your rheumatologist! Docs don’t really care so much about your pain (subjective) but about how the disease is impacting your ability to function on a daily basis. Can you do up your buttons? Can you wash your body? Can you pick up things from the floor? Can you walk a mile with no difficulty? etc. etc. etc. I never want to say “no” to those things but I do. My PsA is pretty mild but I have a tough time with buttons. And sometimes walking is hard (sometimes it isn’t). It’s OK to talk about the worst days.

It was when my partner accompanied me to an appointment and she reported how much I couldn’t do that the doctor took more significant action. (I was on a treatment plan but he moved quickly through the protocols after that appointment). I was, apparently, putting too good of a spin on things. Having her there to talk about how she saw PsA impacting my life (and by extension, hers) was really important.

My current rheumy pays attention when I tell him that PsA is preventing me from doing my job at work, exercising, cooking meals, etc. He really sits up and pays attention to that. Your doc should want you functional and not diminished (even if that means a little pain and discomfort comes with it). I’d call for a follow-up!

And, YES to this. Mine is “mild” too in that I don’t have lots of joint damage. But it sure doesn’t feel mild. And it sure doesn’t behave that way.

1 Like