My name is Keryn and I’m 38 years old from Melbourne Vic. I’ve had psoriasis for 25 years and recently got diagnosed with PsA after having a guttate flare post pregnancy.
All started with one nagging sore finger too!
I have been on sulfasalazine, and prednisolone for 3 months now and my inflammation is getting worse. My hands and wrists are very painful at night and in the mornings. I’m awaiting an MRI on my back to check for sacroilitis, as I also have a back injury and I think I’ve ignored all of my back problems due to the injury.
So it’s been really cold here in Aus, I guess my biggest question is what do you guys use for pain relief when you’re at your wits end? I’m a shift worker, and night shift is a killer for me!!
Hi, Keryn, and welcome! What do we use when we are at our wit’s end? Now THAT is a good question, and a question to which there are probably as many answers as there are members here. Aside from the therapies that you can read about in the Newbies’ Guide, we have a whole section devoted to Complementary Therapies. Go to DISCUSSION, and scroll down until you see it. Please be sure to read the introduction to that section carefully.
You are, of course, in the dreaded Gap – that period of time while you wait for your therapy to do its magic. That is, if it’s going to. If it’s not, your rheum will give you something else to try. And in the meanwhile, your doctors may give you some short-term relief in the form of steroids or pain medications. For hands and wrists, have you tried splits and support gloves? How about heat for your back? Or epsom salt baths? Try starting a new discussion thread asking for suggestions for specific areas of your body. I’m sure you will get some good ideas.
Finally, the medical system in Australia works a little differently from the way it does in some other parts of the world. You may want to go to MEMBERS and do a search for people who are in your area. They may have some suggestions for help close to home.
Keryn, I hope that you’ll find this a good place for support and information. Give us a shout if there’s anything we can help you with!
I have a couple of issues with pain relief, I’m already on an NSAID and don’t want to take anything else. I have a one year old to look after and I am in the medical prof so taking anything stronger will fog my brain and I can’t work… I like working!
I’m definitely in the gap, I have found a wonderful rheum who is very proactive. She wants to look at my back MRI before starting any other meds and it took me almost 2 months to get in to have a hand MRI. The pain seems to be progressing very fast…
I will look for other people in Aus. Thanks for all your suggestions.
And I think that you are better off not taking anything more than an NSAID if you can possibly tough it out.
You are very lucky to have a proactive rheumatologist who you like!
Have you come across the book I recommend in BOOK REVIEWS? If you are in the medical profession, you will likely find it to be a great resource.
Hi Keryn! I started off with just NSAIDs for quite a stretch, or it felt like forever anyway. Some worked really well and some not so well. If you aren't getting great relief, it may be worthwhile asking to try a different one out.
Sorry you're dealing with this. I wanted to let you know that though I seem to be stuck with it now, I had many times that it got worse and better from 32 until about 52 when it really got stuck. There is definitely hope for a respite at your age.I had almost a decade with nearly no symptoms.
I remember that it came back with a fury after pregnancies and my remission was still after that.
I always take a warm shower on my way to do anything. I bought a heating throw that works on the cars electric.,and used microwavable heating pads at work any time I could. It helped as much as anything else.
At night I used reheatable mits, so that I could go to sleep.
Hi Keryn, and welcome! Yuck, it's winter where you are. Well, yesterday I think was our official start of summer here in Minnesota--ugh it has been extremely hot and muggy for two days--to the dangerous point! We had a terrible thunderstorm tonight, with torrential rain and tornadoes in nearby counties. That's REAL summer in MN, and now that it started, it'll be like this most days until September--makes me miss winter!!! Of course, in the dead of winter I always say I'll never complain about summer again! It's definitely a visious cycle!
Anyway, I wanted to mention--I remember when my PsA was really hammering away at my body from my waste up, getting in the shower and letting the cold water hit me until the warm water came actually felt really, really good. It only lasted a little while, but boy did that wake up my tired tendons! I'd switch to cold at the end of my shower, too. It sounds crazy, but you get to the point where you'll try just about anything to help you feel better--if even for just a few seconds. Ice packs and finally Nortriptyline worked well to help the neuropathy in my feet.
Ice packs and my heating pad have also helped my back somewhat. Boy, I feel for you working shifts! The fatigue is horrible, and it must be worse than that for a shift worker. I've been taking coq10, which before I was on Enbrel I noticed would make me feel a little better. I still take it, but don't really think it matters now that Enbrel works for me. I had tried every "natural" remedy known to man, too, but none of them made a difference in my pain--they made my pocketbook hurt a little, though! Doesn't hurt to try different things--like Seenie said, check out "Complimentary Therapies" -- some people have good results from the many products out there for pain and inflammation.
And about Enbrel, or the other biologics--they're quite safe and don't make you tired, and I don't think many of us have bad side effects from them. I, for one, don't get any SEs from Enbrel. Actually, when I first went on Enbrel it gave me so much energy I didn't need more than 5 hours sleep a day! The fatigue is a big symptom and it's nice not to have that.
I hope you figure out some things that will help you feel better. :-)
I've only ever taken NSAIDs for pain relief. The only time I took them daily was while I was waiting for diagnosis and I don't think they worked for me. Now that I take one or two once in a blue moon, I find them very effective. I don't know if that helps or is just confusing ......
Something tells me you're a very busy woman, and I expect you're well aware of how much lifestyle changes can help. Even so, it's worth mentioning that getting ample sleep when you can, eating nutritious food, drinking plenty of water, keeping moving in a relaxed way as well as a work way etc. etc. can all help to prevent pain. Or perhaps these things alter our perception of pain.
So good to hear you have a great rheumy. That's half the battle!
For spinal pain, I do find NSAIDs are somewhat effective. Anything peripheral they don't seem to touch for some reason.
I do occasionally use Panadeine (though I tend to get pretty fast tolerance - it only works for about 3 days I find, then I have to stop), and have even used Tramadol at night a few times in desperation (the doc gave me one Tramadol script but it has gone out of date now... ). Panadeine doesn't leave me foggy, but Tramadol is pretty horrible - no way would I take it while working.
A lot of my pain was coming from the tendons and ligaments attaching to my bones near the joints - so heat in particular (or occasionally cold, or alternating as Grandma J mentioned) made a big difference to me. If you are doing shift work in winter, get some quality merino wool thermals if you can afford them, or potentially the sports compression type garments.
Luckily I got myself out of the Gap after about 9 months (first Enbrel, then Humira). Once out of the Gap, the best thing I have found is Yoga and Meditation.
I always found the steroids did work quite well if I upped the dose, but that came with all sorts of issues, and if you have already been on them for 3 months, I'd be trying very hard to get off them as quickly as possible.
I hope you get some relief - it really is cold at the moment isn't it!
Hey there Keryn and welcome. I'm just over the border in SA and yes this bloomin cold winter is killing me. These guys have been a great help. Take all their suggestions, because they really helped me in the early days (only diagnosed 2 years ago, and just started on Enbrel 4 months ago)
Contact me if you want to chat more about the Aussie qualification system.
Thank you so much for your warm welcome and suggestions. I got a date for my back MRI today which will give me an idea if I’m to start on the biologics. I’m holding off on methotrexate as we were going to try for another baby, but I think that’s going to have to wait for a little while. I’ve been heat packing it up madly and it actually is soothing while it’s on. I’ve got two fourteen hour night shifts this week so I’m taking my wheat pack to work with me. Wish me luck!
Keryn