Newbie Alert!

Welcome Greetings and Introductions
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Hi there! Here's my story (so far...):

I was just diagnosed with PsA on January 27, 2016.

A few years ago I was told that I have psoriasis on my scalp (a very small patch that flares up once or twice a year, for a day or so each time).

In September of 2015 I started having mid to lower back pain that would wake me up from about 3am to 7am each morning (still does). By the time I would actually get up at about 8am, shower and walk 5 minutes to work, the pain was gone, and wouldn't return again until early the next morning. Since then the pain seems to be more in my mid to upper back.

I was fortunate in that my doctor was very thorough in testing, and got me a referral to a Rheumatologist within 4 months of my first complaints. Since September I have done physio, chiro and massage therapy, as well as acupuncture. None of it has helped. Pain medication (T3's with codeine, hydromorphone) doesn't touch the pain.

I am now on Naproxen (Vimovo) and don't feel that is really helping either...although I think it is starting to hurt my stomach.

I have always suffered from insomnia, but knowing that I will wake up every morning at some point in a lot of pain is now causing me to have sleep anxiety, so I am currently running on about 2 - 4 hours of sleep per night. I have tried a few different sleep aids as prescribed by my doctor, but they also aren't helping either.

I am currently 2 months into a 4 month medical leave from work to get this as sorted as I can. I am swimming, going to the gym and going for walks.

After spending a lot of time on this site, I realize that I am very lucky as my mobility has not been impacted, other than when I first get out of bed in the morning. The sharp, stabby pains I feel in by back (spine), make it hard to breathe at first, but as I mentioned above, by about an hour after waking, the pain is gone until the next morning. Other noted symptoms I have are the psoriasis on my scalp, foggy brain on occasion and fatigue....I am SO tired ALL the time, but that may be from lack of sleep, rather than PsA.

I feel so incredibly grateful to have come across this site so early in my journey. I am a very positive, cheery person, but this has all started to take a toll. Fortunately, I have a wonderful boss, amazing friends and family, and my husband is just an absolute rock star through all of this. I am excited to learn, connect with people, and get this under control. I want my life back, but I know it will take some time. Thank you to everyone on this site for your contributions. I feel so much better knowing I am not in this alone.

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Hi Aspyn,

that is a beautiful place on your profile pic. Sounds like you have a great attitude, which is half the battle. I do not know much about the spondylitis form of this disease, which I assume you have, so not much to offer there but mainly I just want to say hello to you.

What I think I know about spine involvement boils down to: movement helps a lot - sounds like you have that covered. And I believe that biologic drugs are often prescribed after the initial treatment with NSAIDs. I've also heard (and others will doubtless have more reliable info.) that chiropractic may not be the best idea.

But one thing I am sure of with any type of psoriatic arthritis is that fatigue is a very common symptom. And also, from my own experience, that it can abate once treatment commences, which is a wonderful feeling when it happens! It's no wonder that apprehension about pain is troubling your sleep though.

I hope you do really well, it's great that you have supportive people around you. I'm glad you found us!

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Hi Aspyn and welcome! Hopefully once you are on meds that treat the disease you will have some improvement.

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Hello! Welcome to the club, we are ever-so exclusive! :stuck_out_tongue:
The meds help a lot. Getting on a good DMARD, biologic, or combination can be a huge relief. There are also some minor, in-office injections that can also be wonderful for your lower back pain. It gets better from here!
Also, if your current NSAID is causing stomach aches, let your doc know right away. There’s something better for you, that will not be so destructive to your tummy.

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Thank you Sybil, Stoney and GrumpyCat for your warm welcomes!

I just saw my rheumatatologist today, and I have a few more tests to do before my doctor can confirm for me that this diagnosis is correct (I'm being a bit firm with him about exhausting every avenue, and he has been just lovely about it all, and takes me seriously, which is very helpful) but he does believe it to be the Spondylitis form. I am trying a new anti-inflammatory, since the Naproxen hasn't been helping, and my fingers are crossed that it will ease the pain, be easier on my tummy and maybe I can sleep again!

Sybil, the profile picture is from Banff National Park in Alberta. It is simply stunning there, and the picture really doesn't do it justice.

Thanks all for your information. I greatly appreciate it, and I look forward to conversing with you all in the future :-)

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Welcome aspyn

I’m a relative newcomer myself so can’t help with any meaningful advice but if you ever need just a bit of support, I’ll be there! Sounds like you have a good doctor which is half the battle, so hopefully you’ll get some of the good drugs soon xx

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You are absolutely not alone, Aspyn! Welcome to our world. If you've been lurking for a bit, you'll know that we have quite an international group. I'm the Canadian moderator here, so a warm Canuck welcome, eh? As a Canadian, I know that managing to see a rheumatologist within four months of your first complaints is pretty amazing. You are so lucky to have got there so fast.

So you're working your way through our Newbies' Guide, are you? Have you noticed the book that I recommend in BOOK REVIEWS? It is a bit out of date with respect to the latest medications, but otherwise, it is the best quick study guide to PsA that you'll find. I notice that it is no longer available in Kindle format at amazon.com, but you can still get the e-book from amazon.ca.

If I had one piece of advice to give you (and of course, I do!) it would be to ask your rheumatologist for the most aggressive treatment that s/he is prepared to give you at each stage. As time goes on, research is showing that the people with this disease who do best in the long run are the ones who got early and aggressive treatment.

We love questions. Humour us and ask away! We're glad that you found us and we hope that you will be as well.

Seenie

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Thanks for your welcome notes, Seenie and Golfnut!

I really appreciate the advice, Seenie. I have the book on my list of things to buy, and I will certainly speak with my Rheumatologist about being aggressive.

On a side note, I woke up with almost no pain today! That's the 5th time since September! I feel like I could run a marathon....but maybe just a swim instead :-)

I look forward to connecting with you both more as time goes on.

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Hi Aspyn! Welcome to this website!

I know things look bad now, but most of the time PsA can be effectively treated and often sent into remission. I'm not sure when you will see your rheumatologist, but that should be your turning point.

Likely you will start on a DMARD such as methotrexate (MTX). Then when the MTX doesn't work, you'll likely go on a biologic. Most of the time, biologics work very well. When they don't, there's still other options.

One place you can find information is psoriasis.org. They have some excellent webcasts.

That picture was taken five years ago - the summer before I was diagnosed. My knee (not shown) was badly swollen, so much that I needed a cold ice pack on it in order to sleep. I started on Enbrel, and very soon I was completely back to normal. I've been healthy now ever since.

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Hi Andrew. Thank you for your kind welcome. It is so encouraging to hear that you have had such success with Enbrel! I hope that continues for you :-) Thank you for the website referral. Greatly appreciated! Currently, I am starting out with anti-inflammatories, and will progress up from there. No relief yet, but I am 2 weeks into my diagnosis, and here in BC, Canada, they need to have you go through the line of progression before they prescribe the biologics...

As always, I am so incredibly grateful to have lucked into finding this site! So many wonderful, kind people!

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Hi Aspyn, and welcome! I've tried to write a couple times now but my messages aren't going through! So here goes again!

It's great you're on the path to better health, and having relief for your back pain hopefully will be fast. My back was like yours--so stiff at night and getting up in the morning or up from sitting was so painful I felt like a 90-year old and I had to hold onto things to stay standing for the first couple minutes. Unfortunately, even though Enbrel cured that stiffness, I've have some ongoing back problems. I'm very careful now not to lift heavy things and no sudden movements. But the relief from stiffness and the way my back feels now is a day and night difference!

Good luck in your quest for a better, healthier life!

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Just a quick ‘hello and welcome’ from me too. I’m another newbie! :slight_smile:

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Hi Grandma J and flow! Thanks for the welcomes :-)

Grandma J, I am sorry to hear that you still have ongoing back issues, but it's great to hear of another Enbrel success. I hope that continues to work for you :-)

I am hoping that I can get my inflammation under control ASAP. Just went off Vimovo, and started the other day with Diclofenac, which really seems to help with the pain.

flow, a warm welcome to you as well! I hope that you get as much out of this site as I have!

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I have to say it's so nice to see replies from newbies and everyone is so welcome and appreciated here! I became a "member" almost 2 years ago and it's such a friendly place I keep hanging around, even though being on Enbrel almost 20 months now I have at least 80% improvement in my psoriasis and psoriatic arthritis.

Aspyn, I mentioned my back "going out" to forewarn you because my back felt so good the first 6 weeks after starting Enbrel, I didn't realize there was so much damage. I'm sure I overdid it (by just being more active--no unusual heaving lifting or recreation) and sent a few discs protruding and squeezing my spinal cord. It settled down after several weeks of TLC, but I wouldn't wish that kind of pain on my worst enemy! I don't want to scare you, but be very careful if that stiffness leaves, because there could be some damage lurking from the stiffness you've described the same as mine was.

Have a good day, everyone! Good luck with your ongoing treatment and starting biologics!

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Hi Grandma J,

Thanks so much for the warning, It's a good reminder. Sometimes when we start to feel better, we go "all out" and do things that our body may not be ready for. I know I have done that in the past, and in this case, I don't want it to come back and bite me.

All the best to you as you continue with your successful treatment :-)

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I’m positive I have some of that lurking damage you mention, Grandma J. However, I have a different philosophy on “good days”. My mantra is, as always, make hay while the sun shines. Since I never know when or if I’ll have another good day, I live it to the fullest, and pay for it later. The nice thing about it is later on, when in miserable I get to remember what fun I had during that respite. To each their own, I just thought I’d say what works for me. It’s definitely not the best or only way to live. :slight_smile:

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Grumpycat, I agree we do need to live life to its fullest. Be careful is my mantra, and it is and isn't hard for me to do. I imagined spending the rest of my life in a wheelchair when my back was out, so I'm just careful about how much I lift and how long I lift things. Carrying heavy things (over 20 lbs) is unsafe so I avoid it--although I have been increasing my lifting as time goes on and still doing well! :-)

My back has affected how much walking I can do because my legs get weak and there's my feet that can't take a lot of walking, but I can do some. I wouldn't, for instance, spend a day walking around at a museum or the state fair, but I haven't given up everything. I look at it this way: I'm more limited than I was 3 years ago, but I still have an active life with hanging out with grandkids real often and still having a job, etc., but I'm careful because at this point I want to avoid future huge pain and disability as much as I can. :-)

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I agree I would like my life back but also realize I am going to have a new normal. I currently can not walk but Hope too again. Good luck to you it sounds like you have a great support system. My husband has been great and some of my family has been as well. My bosses yes I have several I teach at two schools and have continued working though it is very hard as the have not been supportive. Some friends yes some no same with colleagues. You do find out the true nature of people with this. This site is helpful as well. Aspyn try to stay positive and know people do get the fatigue at least I know I do. I am physically emotionally and mentally exhausted but we can DO IT....

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Hi Scienceteach. Thanks for the encouragement. I am sorry to hear you aren't able to walk at the moment. I hope that you are up and about very soon! And whatever support you may be missing out on from friends and coworkers, you will be sure to get from the wonderful folks on this website :-) You're SO right....we can do it....and we can be here for each other when we feel like we can't.