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Living with Psoriatic Arthritis (PsA)

Feeling depressed and unsupported


#1

Been out of this group for 4 yrs.

since then I have been diagnosed with Psoriasis via skin biopsy. But never the PsA until I met a Rheumatologist just 4 months ago who is truly the best one so far! She ran more tests, did a thorough history and physical assessment of my body/joints and officially diagnosed me with Psoriatic Arthritis. I’ve been taken off Nabumetone to Sulindac which I had to stop due to Gastritis. Can’t take anymore NSAIDS/Anti-inflammatory coz of Gastritis.

I’ve been placed on tapering doses to maintenance dose of Prednisone 10mg for 3-4 weeks then due to increased Sed Rate to 68 despite Prednisone 10mg & increased joint pain, my Rheumatologist increased my Prednisone to 20mg daily—on it for about 2 weeks now. I have gained weight but my pain is not severe but still not tolerable. I will stay on Prednisone indefinitely per my Rheumy.

I am about to start Enbrel once my insurance approves it.

I am happy about that my Rheumy is on top of my medical issues.

But not about my family not understanding what I am going through. They feel like I am faking it. My husband and our 20yr old daughter doesn’t have compassion for my pain and inability to be as active as them. Or to be able to sleep like them. You know how hard it is to sleep when you have Prednisone and multiple pain or worries running in your head?!? Trying to have them come to my Rheumy appt as my doctor suggested but they don’t want to. That is my biggest frustration right now—to have my family actually be there and understand what I am going through and not make me feel more upset of what I can’t do and what I feel.


#2

I understand completely. It took several months for my husband to really grasp the amount of pain I deal with daily. Going to my rhuemy with me did help. My kids have been more understanding also. It is very frustrating for them. One reason bc u look fine in the outside. We push thru our day despite the pain we feel.
I really hope they can come to an understanding of ur PsA. Will be thinking and praying for u guys.


#3

You got that right, myuntoldstory!

Well, Hannah, you must have left the group about the same time I joined in March of 2014! Sorry about your diagnosis of psoriatic arthritis, but glad you rejoined because it’s good to have the support of others in your same situation. I’ve always thought the arthritis is way worse than the psoriasis, even though psoriasis is embarrassing—at least it doesn’t hurt, really. I guess the itching can drive a person nuts at times, though! :persevere:
I have the same problem with my family. They joke about my PsA sometimes—my husband makes snide remarks about it to our kids (they’re all adults) and of course everyone laughs at his “humor”. It really endears me to him (NOT!). I tell the kids you better not laugh ‘cuz if you get this stuff you won’t think it’s too funny. My 36 year old daughter has recently had lots of itchy skin and some patches that look like psoriasis. She has lower back pain and periodic pain in her hands. I can’t help but think she’s got a start of something not so funny and she has 5 young kids. I hope it “holds off” for a few more years—I was lucky my PsA didn’t really get bad until my 50s.

I hope you find, like I did, the people here understand what you’re going through, and they care!


#4

I’m so glad you’ve rejoined this group. You’ll get emotional support and understanding by the bucket load here!! It took my husband and daughter a while to get to grips with how much I was suffering as I think they were simply bamboozled at how quickly it started with me (or rather how quickly it got so bad I cried with the pain!). They were in denial as to how it could possibly be that someone as healthy and vibrant and active as I was could so suddenly become so incapable. My husband came with me to my first appointment with my Consultant after I’d had a whole load of tests and scans etc. It opened his eyes and he’s now a great support. At times I don’t look well and it’s ‘easier’ to get understanding and compassion then - but most of the time I look fine, and I have to actually voice how I’m feeling. That doesn’t come naturally to me as I’ve never been a ‘moaner’ and always just got in with things. But shout it out girl if you have to! My daughter (who is 42) loves me to pieces but finds it difficult to come to terms with her Mum getting older and less able. She’s terrified of something happening to me and can’t bear the thought of losing me. A lot of what appears as not understanding and not having compassion is because of their fear. They go into denial.

Keep in touch with this group, I hope you get started on Enbrel soon. I’m about to start Humira and have heard great things about biologics. Hang on in there honey xxx


#5

I’ve thought that, too, Katie, because one of my daughters has said many times she’s sad to see me get “old”…I feel at 64 I’m doing pretty well, but I walk with a limp and everything I do is slower (not the faster pace I had before my feet got bad). So, I do think sometimes they laugh at my husband’s jokes, but inside they worry and maybe are trying hard to downplay the seriousness of it. That probably in a way helps me, too, because it forces me to try to ignore most of it and forge ahead instead of laying around and feeling sorry for myself…oh, I’m sure I still do have enough self-pity, but I keep it from them and share it here! :roll_eyes: - sorry, guys! :wink:


#6

I think fear is a big part of how our families react, and sometimes they don’t even realise it themselves! X


#7

Thank you everyone!

Yes, I have pushed through my pain in the past few years despite taking Nabumetone 2x a day and occasional Cortisone shot to my elbow.

I have been getting a lot of back and leg pain recently and my Rheumy ordered MRI of my neck and whole spine. I am still waiting for my insurance to approve it so it can be done.

And that is why I am miserable most of the time. I think my PsA has gone to my spine/neck.
It used to be just on my left elbow and left knee. Both my knee and elbow are still swollen now but been living with that swelling and pain for years. Heating pads, ice pack, brace/support and etc takes the edge of the pain and swelling. I have learned to push through my day with those lingering pain.

But since my spine/neck has been hurting, getting up in the morning is hard. I wake up stiff and I have to take it slow or I start my day with pain.

I take Prednisone 20mg daily so sleeping is also really hard to do. Usually I am up until 3-4am even with Trazodone that I was given to help me sleep. Then I wake up at 7-8am, take my Omeprazole, turn on my heating pad for my back while Waiting half hour to pass then take my Prednisone 20mg ( have to do it this way due to Gastritis—Ior I get more miserable with abdominal pain and nausea). All this time I am still in bed for another hour or so until I am no longer stiff. My husband thinks I am just taking my sweet time and gets irritated.
Often times he says if only a slept earlier, I would be able to wake up and get moving earlier.

I try. I honestly try to sleep earlier. But I work 8 hrs a day. When I get home, after making dinner and having dinner, I am so exhausted and I nap for about 1hr or so. Then I regain some of my strength and continue my work (I work home Health and need to document my visits) at the same time I would probably be doing laundry while charting. If I don’t feel sleepy, I can’t force myself to sleep then I just keep doing what I can at home. Maybe do dishes or fold laundry while watching tv. Or read a book or be on my phone Until such time I am sleepy. I figured, if I can’t sleep, might as well do something. Even if everyone else is asleep.


#8

Ugh… I’m hearing you about the prednisone… too awake to sleep, but not alert enough to do properly enjoyable / productive things for yourself (hence cooking, cleaning, folding etc).

I must say though, reading your last post, it really did strike me… If you are working 8 hours a day, making dinner for everyone, doing dishes and folding the laundry, all with uncontrolled PsA and meds with big side effects… what the heck are the other people who live in the house doing? And if you are getting all this done, what on earth are they irritated about? That really does not seem fair :disappointed:

I haven’t had the experience of having a successful conversation with a partner / adult child about it, but I’d have to question why your husband is so irritated about what time you get up? On the days you are going to work, what difference does it make to him? Is he missing seeing you / talking in the morning, or missing going to bed with you at night, or just sniping?

I’m not sure if you are doing the majority of the housework in a house with other adults - but it does sound like it. When you have a full-time job and what can be a very challenging condition to manage, with the pain, the fatigue, and despite that lack of ability to sleep, then it sounds like maybe your family, if they are can’t be understanding, perhaps as a start need to just pull their own weight consistently, so that’s one thing less you have to worry about.

Perhaps someone else who has done this successfully with their partner / other adults living in their house can give some suggestions?


#9

Hi again, Hannah. I reread this thread because I knew I had missed some of the details, and somehow I did miss where you said you’ll be starting Enbrel when the insurance approves it. That’s great!!! Ask if you can start out with 2 injections per week—that’s what I got and it worked extremely fast. You do 2/week for 3 months and then go to 1/week.
I’m interested about the Prednisone ongoing. My rheumy had only ordered a couple prednisone tapers for me (which made me feel great) but after that, when I begged for more, he told me it wasn’t good to take too much prednisone and refused. That’s when I finally went on Enbrel. If I were you, I’d question why he wants you to stay on prednisone indefinitely. I would hope that Enbrel will do the job and you won’t need anything else—especially prednisone.
You are Wonder Woman, working 8 hour days and all that you do at home! You deserve appreciation. I think some of us are stuck in the old thinking—the woman makes the meals and does all the housework, even if she has a full-time job. I worked full-time until after our second baby came—then became a stay-at-home mom and did all the housework while raising 4 kids. There is no way I could’ve worked full-time, too. And, I was lucky not to get arthritis until the kids were grown up—thank the lord!!!
I’m glad you came back to this group because you definitely need support and encouragement.
I hope your insurance approves the MRI and the Enbrel soon!


#10

Hi Hannah,

And poor you. First can the gastritis be managed more? I see you’re taking the right stuff but is it at the right level?
Secondly pred can make us go one of two ways in my view - I become a pollyanna on it, super positive and hellishingly boring consequently (according to my partner). However my mother became super depressed on it and suffered what I would term ‘virtual roid rage’. Neither scenario is that great really. Is it?

And remember if the embrel works - you may well end up tapering off it. Hang on to that thought for now at least.

As for your husband and daughter, dare I say it just quit doing the housework and turn up the tears and drag at least your husband to your next medical appointment. Tell him your doctor isn’t just merely asking if he would attend with you, but saying it’s a necessity.

And lastly have you thought about getting some talking therapy? That above everything helped me cope better especially with my fear of this disease. In the meantime though, big hugs. x


#11

I have been on Prednisone for over a month since I could not take anymore NSAIDs/Anti-inflammatory medications. Yes, my Rheumy said it wasn’t good but my left elbow and left knee are swollen and my back is persistently aching and stiff (more so in the mornings upon waking)
She was supposed to only give Prednisone 20mg x1 wk, 15mg x1 wk, 10mg x1wk. Then when I went for follow up, before Prednisone was done, she said to increase to 20mg and that was last month. We had no choice if I didn’t want to be stuck in bed due to pain or stiffness until my Enbrel and MRI is approved.


#12

Yes, I do a lot in the house when I can. My husband complains that I don’t get up early to take our little one who is 8yrs old to school.

He does housework-he cleans and fixes up things. He does his own laundry.
Our 20yr old does help up in the home too-he helps with her sister, dishes, trash, clean ,etc—all because we pay for her schooling and all her expenses. She has no job but to help out in the house and her sister which is our arrangement if she wanted us to pay for her expenses rather than moving out and finding a job.

Yes,I do work 8hrs a day/40hrs per week. I HAVE to because I earn more than my husband and we get our health benefits from my employer.

His complain is I don’t consistently do my chores daily—I may do them on half of the week. Other times after working 8 hrs, I would come home and be exhausted and nap 2hrs before I could function.

He says if only I sleep earlier or more—I would be feeling better in the mornings. I WISH IT WAS THAT EASY!

And Yes, I will be dragging him to my next Rheumy appt!


#13

“just” “only” they use those to make you feel like a failure but can still pretend they “only” want to help… Obviously getting a good night sleep would help… Obviously you would be doing that if you could… When you don’t have trouble sleeping you feel like all you have to do is just go lie in bed and go to sleep… When you do have trouble sleeping you know thats not how it works…

I have a colleague who has a son who eats every vegetable she puts in front of him and always has… He doesn’t like candy too… Which is awesome for the kid of course! But it doesn’t mean that she deserves a medal for accidentally having a kid that likes vegetables…

Hug!!


#14

Before my PsA diagnosis, we visited a friend with MS. A youngish guy who had just finished re-building an ancient and lovely farmhouse pretty much from scratch when he got the diagnosis. Trouble was (well, one bit of the trouble), the bathroom was down some steep steps and he didn’t know how he was going to handle them. I said ‘you could get a slide’. He replied ‘and I could break both your legs and you could get a bl**dy slide’. I thought ‘fair point’.

I’ve learnt a wee bit more about health problems since then. People are just so thick about these things. Your husband has a way to travel for sure. You know him better than anyone and therefore if anyone can make him understand, it’s you. What gets things through to him: reasoned argument? Displays of raw emotion? Access to information …?? There must be a way though it could be a long process.


#15

@Cynthia Exactly! I would obviously sleep if I could!! But it’s different every day/night. I mean, I have been on Prednisone DAILY since Dec 26,2017. I’d LOVE to be able to lay down and Fall asleep at nigh! I truly wish that is was that easy to do. I really do.

My exhaustion after a full day of work is unbearable that in the evening I cannot help but nap so I can at least function again and be with my family before the kids go to bed. Other days, I may be able to have dinner with family and do chores.
Other days, I may be able to Make dinner and not do chores.
Other days, I may need to be in bed while they have dinner and they do chores.
Other days, I may be able to have dinner with family but not be able to do chores.

They resent the days I can’t do stuffs because they don’t understand Why I could do it yesterday but Not today!?!
Or they cannot believe I am in pain when I look fat (thanks Prednisone!) and was Able to work!? They think I USE it as an EXCUSE and I honestly think they see me as a Hypochondriac.

So it hurts my feelings when I am perceived that way even When I show them that My left elbow and left knee are swollen. My back hurts all the time. I have stiffness in my back and legs in the mornings. Oh and My ESR is 68. (How can I fake these?!?)


#16

@Poo_therapy I have been getting this awkward response from my family since even before Prednisone so I don’t think i’m Being depressed or a Pollyanna because of it.

I don’t know where I can get talk therapy. Plus that would involve in having to fit it in my already busy schedule and I may not have to energy for it with working full time and having this full time diseases! :face_with_head_bandage:


#17

Hi Hannah,

I’m hearing you. When I was diagnosed, I was working as a senior executive in a mining company, earning the majority (my husbands spending habit was HUGE), and doing most of the housework and child caring (outside of external child care providers and nannies), as well as working around 60 hours a week in the office, plus regular trips to west Africa. (I am turning 43 this year, and my daughter is 8).

It’s hard to fit even the Rheumy’s appointments in, let alone a psychologist, PT, and all the other things that we recommend. (Now I personally have a haematologist, neurologist, and pain clinic to add to that mix).

But here’s the thing; you’ll find my story is not unusual. If you go back aways, you’ll see echoes of it in Sybil’s and Poo’s, and many others. Nobody is suggesting you are not already doing whatever you already know is important to deal with this. But you did ask for our input, and you’ve had some really good suggestions, including Poo’s, which comes from a place not so dissimilar to yours, not so long ago.

There were two things I personally learnt, during the process (6 years + now), the first mostly thanks to the amazing people here, the second because I didn’t initially listen to the first;

1 - the disease might feel like it is sucking my life out of me, but life is about perspective, and it’s amazing how looking at things a little differently (and importantly having some help to do so), can really change your life;

2 - that severe depression, common with diseases like this, has a much higher fatality rate than the disease itself, and voluntarily driving into a truck is terrifying to even contemplate in a real-world way, let alone seriously consider doing. (Contemplation being the consequence for me of ignoring #1).

So, in short, we really do hear you. And we still say; keep posting here, we’ll keep listening. And if I had my time agin, I’d choose (in this order) to find a psychologist who will help, get onto a DMARD and / or biologic, and off the damn steroids as much as I could.


#18

I second this! Well 4th? 5th?.. if I could go back 10 years I would tell myself to go see a psychologist… I wouldn’t even tell myself to buy bitcoins… (Well I might… but psychologist first)

Your situation sounds like mine before I had a major crash and am sitting on the couch doing nothing (which on some days is still too much, mentally) waiting to finally get the help I need…


#19

Hi everyone. I’m new to this so I’m not really sure what the routine is but I saw this group and thought maybe you guys could help. I was only recently diagnosed in November of last year but I’ve felt the pain for two years and never knew what it was until then. For about a year my mental health has been deteriorating making it difficult to stay positive. I started with meloxicam and sulfasalazine but it’s no longer working. It’s becoming more difficult to control really negative thoughts and feelings and I’m starting to isolate myself more because I’m afraid I’m going to lash out at people who are close to me. I don’t know or talk to anyone about this because I feel like when I do they don’t understand. Also my appetite has decreased. I’m seeing my rheumatologist in two weeks and I’ll let him know about these things but I feel on edge more and more every day due to stress and being extremely fatigued and tired. Anyone got any advice on how I can cope till then?


#20

@HumbleListener - You probably already know what you need to do. Not only would seeking out counseling be a good idea, but you may want to consider seeing someone who could prescribe meds. Once the disease is under control, you may well find that your depression symptoms are greatly improved. Many people here have had that experience. Regardless, you need to take care of both your physical health and your mental health.