Hi all. I’m 28 years old and I live in Manchester. I am still having tests to be diagnosed with psoriatic arthritis even though all the docs know that’s what I have. (Also has psoriasis for as long as I can remember on my scalp). I don’t know what I’m asking for, maybe just someone to make me feel like my life isn’t over? I started with symptoms in April this year and have been pretty much down and depressed since. I’m affected in my knees (prominently my right knee) and my ankles (mostly my Achilles’ tendons). I have 2 children (son 6 and daughter 4) and I quite literally feel like I will never come to terms with this. I struggle walking and even the school run is a struggle for me and that is only from the car to the school yard and back. I feel like I’m letting my children down. Also my partner and I were lucky enough to get a decent tax rebate and want to surprise the children and take them to Disneyland Paris next year. But I can’t book it yet because all I can think is ‘am I even going to be able to walk?!’ Also keep thinking shall I wait till I’m started on some treatment first so I know where I am a bit better? (Currently only taking naproxen and cocodamol). Myself and my children have been through a horrendous 18 months and taking them on this holiday and seeing their faces when they find out where we are going is honestly the best thing I feel I can give them at the moment. But I just can’t look forward to booking it or going as I worry how my disease will affect me. I feel very alone ( although I do have some good family support) in this and my thoughts. My mum had inflammatory arthritis (she died 10 years ago at age 39) but not 100% which type and as you can imagine she’s the one person I’d love to speak to right now but I can’t. I just need some friendly people. I know things won’t ever be the same again but right now, as I said, I feel my life is over. I just want someone to tell me that’s not the case and that I will at least be able to enjoy my holiday next year for my children’s sakes if nothing else. Thankyou in advance. Helen xxx
Hello Hels. Okay, there are no cast iron guarantees, but the feeling of utter desperation around the time of diagnosis is not at all unusual. And another fairly common experience is that the treatment helps considerably and puts a very different perspective on things. Assuming you do have PsA, it is a disease for which there are effective treatments. The way I was before getting diagnosed over 5 years ago and the way things are now are light years apart. It’s still tricky, I won’t deny that, but so, so different in a good way.
Your life is far from over. This is one hell of a bump in the road for sure but to my mind there are worse things. It’s early days for you to start seeing things differently but I’ll say it anyway … why not book that trip? Worse case scenario is that you’d have to do Disneyland in a wheelchair (hopefully as a very temporary measure). I bet they supply them, why not find out? Personally I’d rather meet Mickey Mouse sitting down anyway lol. But seriously, if it’s all about the kids I’m sure you can be there sharing it with them and with a bit of luck you might not even need a chair. Good luck with the diagnostic process, hope you get started on proper treatment soon if necessary. Nice to ‘meet’ you!
Thankyou very much for your response. It’s so heart warming to hear people are willing to send kind and caring messages to people they don’t know.
I know it’s because I’m still in the early stages and as I say I’ve not even been diagnosed yet but I know that’s why all I can see is negativity.
I so can’t wait for Disneyland but I would rather wait a little for my own piece of mind but I like how positive you made the situation for me. Thankyou very much xxx
Hi Helen, I can relate to you a lot. We are in a similar situation (minus the kids)–same age, same stage in the diagnosis process, planning a trip that now may not happen (my trip is completely out of the picture at the moment though, as it involves mountain climbing), feeling desperate, etc. I’m new to the site but take comfort in the fact that a lot of people here have found medication that helps and are able to live fulfilling lives. Life is not over. It might change, but change is not the end of the world. The disease will wax and wane. You’ll have bad days, but you’ll have good days too. It has taken me about a month to start to come to terms with it, but I am already in a better mental state which makes coping with the pain much easier.
I think you should go ahead and continue planning your trip. You never know what course your health is going to take; you could be much better by then on proper treatment. If you wait to do the trip, you’ll still be in the same situation, not exactly knowing what’s going to be happening in your life X months in the future. Your kids will enjoy the trip–and in turn you will enjoy the trip, too, even if you are not as mobile as you would like. Hopefully your partner will help you out if you are feeling overwhelmed. It sounds like a great opportunity to make some memories that you and the kids will cherish.
Hi Hels! Welcome to LWPsA, even though I’m sure it’s not something you ever thought you’d be joining. Thankfully, this online site can help you so much, and you will receive kind words of encouragement and support. You can get so much information here which will help you find ways to treat your aches and pains and prevent the disease from ruining your life.
It’s awful to hear of young people like yourself already stricken with PsA. Psoriasis is bad enough, right? I always said, if psoriasis is the only health problem I have to deal with in my life, I consider myself lucky. Well, it wasn’t the only thing…I’m 64 and there are a lot of things now. But, I have found ways of coping. You will, too.
I was going to mention, if you haven’t done so yet, have you tried icing your knees and ankles? Ice packs (if you can get the soft, spongy ones) really seem to help some of my pain. Heat sometimes works, too. I know it’s temporary, but temporary relief is good and it’s a nice addition to pain pills.
Your doctor will no doubt start you on some other meds. Biologics are usually the last one, after the anti-inflammatories and DMARDS. A lot of us have really good results with biologics.
Stay strong–it IS VERY HARD to not let this disease overwhelm you. Hang in there and don’t despair. Things will get better!
Welcome, Hels! If there’s one thing we are, it’s friendly, and add to that the fact that almost all of us have felt what it’s like to stand at the abyss of the unknown. As Sybil says your life is far from over! The very good news is that you’re very close to being diagnosed, which is when the serious treatment will start. And with that comes the prospect of feeling much better – mentally and physically – than you do now.
Have you had a look at our Newbies’ Guide? You may fine a few nuggets of wisdom in there to keep you going for a bit. It may take a while to find the treatment which works for you, but chances are you will find it.
I’m with Sybil: book that holiday! If, when the time comes, you need a wheelchair, your kids will find a way of making that part of the fun. Kids are like that, you know!
So chin up, Hels. Chances are things will get better! Hang in there, and hang out with us here.
All the best to you
Seenie
Hi honey. It’s so very hard isn’t it? Which joints are you struggling with? Crazy isn’t it how you talk such things as walking for granted until it’s such a struggle to!!
I’m starting to come to terms with this is where I am at and it’s gonna be with for life although that prospect still scares me massively.
I am also glad of the group as as you say you can see some positive stories and it does help a little. I’m a serial googler and so I’ve read some scary stuff but that’s my own fault, I’m my own worst enemy at times but I just wanted some answers I suppose. Anyway lesson learned on that!! Speak soon! Helen xxx
Yes, it is difficult. It’s more or less affecting every major joint in my body, though it’s usually concentrated in one pair of joints more so than others at any given time (and that changes every few days). It used to just be my knees, elbows, and lower back, which I thought was just from strain or injury at work. Doctors just thought it was overuse of my muscles and always sent me home and told me to do muscle building exercises, or they chalked it up to anxiety. Thank goodness for Dr. Google, or I may have never found an answer. Not a single doctor connected the dots between my skin problems and pain before I did (which took me three years do to myself). Sure there’s some scary stuff online, but there’s also hopeful stuff and a lot of helpful information that you can arm yourself with if this is something that your doctor isn’t familiar with.
It’ll be there for life, but it’s not going to stay the same as it is right now. Most people suggested that they felt worse prior to diagnosis, and some even go into long periods of remission, so hopefully the future is bright.
Hels,
STAY OFF THE GOOGLE! And for the love of god please don’t EVER look at the images associated with whatever medical diagnosis you’re looking up. NOT for the faint of heart!
You’re already gotten some good advice. there’s so much to take on when you’re first learning about PsA. Just know that things are SUPER changeable. Right now you may feel like the slice of toast that been left under the beans for too long–you know, lifeless and mushy. But with some decent intervention and the right meds that can change.
I don’t have children so I can’t re;ate to the guilt you might be feeling there, but I do have a partner and a job that pays the mortgage and keeps us both in health insurance. SO I know the stress that comes from living with the disease and the need to “soldier on” every day. That relentlessness can be overwhelming. As you can, start getting comfortable with the idea of asking for help. Can you ferry your kids with other moms? Can you have someone help fold the laundry for a bit? Can you get help prepping meals on the weekend so you don’t have to cook each night? Creative problem-solving is called for because your main responsibility is to yourself.
I often feel the same way, but it is surprising what we can achieve. For three years I didn’t venture out of my home city. This summer I have had a weekend in Canterbury, shopping in Cambridge, and I am at this very moment in London - somewhere I never thought I would get to again. And I still thought that at noon today, when I had all but backed out of coming. And the good news is I have done that without even having meds that work yet. PSA is horrible, painful, vile. But like anything life throws at us, we learn to accept it and then adapt to it. Once that eventually happens, I am learning that life isn’t over. It’s just different.
And that is a good attitude to have! Somewhere along the line, Helen, you’ll really realize 1) you’re not alone and 2) there are so many people in this world much worse off. Number 2 is one I constantly have to remind myself…once I said, “why me?” and then I said, “why not me?” - “why anybody?”. It seems unfair, and when you look around at all the healthy people you feel envious–at least I do. I’ve even envied my 92-year old mom, who’s always had it pretty good…or has she? She’s had some terrible heartache in her life–the death of two of her children in the prime of their lives…so I guess I wouldn’t want to trade my life with hers. When I start counting my blessings, I realize the good things in my life far outweigh the not-so-good health I have. Sorry, I didn’t mean to lecture. It is always okay to grieve, and I do plenty of that, too! Things will get better!
Hello there. Yes, I remember the how it felt at first and even now day to day can be a struggle. Know, that you are not alone and that many people do struggle with their health. It helps also to know what to expect. I to have felt alone and abandoned. It is due to the isolation and feeling that no one can relate to your condition. I have felt that and continually struggle with it. Having this diagnosis depending on this severity will be a life changing thing. The life that you knew before as far as doing what you wanted all the time is something you cannot hold onto anymore if you have a severe case. It is hard coming to terms with that. However, know that not having treatment by a medical professional is not an option. It is better to face it head on. Part of empowering yourself is educating yourself about the disease. You must also educate the people around you as well. It is hard for your loved ones to understand what is happening. Be on the move as much as possible. Eat lots of veggies and try eat less processed foods. If you have symptoms that are impacting your everyday life. Tell your doctor and seek treatment. Do not suffer unnecessarily. Mind your mental health and physical health. You are not being a bad parent and letting your kids down. The problem you see is not you. It is your disease. Do not guilt yourself about missing some things. Do the best you can and if you have family and a support system rely on them to fill in the gaps for you. If you are fortunate you will find a treatment that will lessen the amount of destruction the disease can cause. This is simply coping with the disease. If you kids are old enough to understand talk with them about it. If you have a spouse let them know about your struggle. The achilles is a classic sign of the disease. Just to give you an idea of the different types of things you can or could encounter–depression, anxiety, pain, hypertension, diabetes, insomnia, elevated liver enzymes, fibromyalgia, extreme fatigue, clouded or hazy thoughts, and all kinds of inflammation. So you can see from the range of symptoms that sometimes you could or may need several specialist to handle each part. This is not meant to depress you but only give you some insight into what can but does not always come along with it. Take it one day at a time would be my advice. Try to stay in motion–water exercises if possible. If not walking or just doing routines around the house. See about getting the inflammation under control and then start working to manage the symptoms. It is hard and difficult but most of life is. Hang in there. I am rooting for you.
Thankyou so very much 
Paging Hels, Weasel and Woodworm! Haven’t heard from you lately.
Why not drop by and let us know how things are going with you?
@Seenie, thanks for checking in. I’ve been lurking in the background and just reading posts lately, mostly because I’m questioning whether or not I have psoriatic arthritis or if it’s something else (even though my PCP gave me an unofficial diagnosis). Two skin biopsies have come back as something other than psoriases (nonspecific spongiotic dermatitis, and “superficial dermal lymphocytic perivascular chronic inflammation, nonspecific”). I recently saw a dermatologist who did a nail biopsy, and that came back as “negative for psoriasis, likely retention hyperkeratosis”. The dermatologist is referring me to a different rheumatologist, and I’m waiting to get that ball rolling. I hope something comes of it and she’s not dismissive.
Plaquenil is doing okay at controlling symptoms. Overall I’m in less pain than I was this past summer and generally have less fatigue. I even have days where I can walk around barefoot in the house without my feet hurting too much. But I do have new joint involvement (right shoulder), my jaw is hurting me more, and my left foot still hurts daily. I’d say I went from functioning at 20-40% up to 70%, but I have days where I drop back down to about 50%. It’s an improvement, but I wish I could function as well as I used to.