Hi everyone, I am new to this board but from what I have browsed through it looks like everyone has some good tips. I have a personal history of breast cancer (diagnosed at 28), I was diagnosed with with PA 2 years ago (31). At first it was just in my hands and feet. I also have symmetrical nail involvement on my ring fingers and thumbs. All but one nail have improved with meds. In the last year it has moved into my wrists and knees and the worst..my back. I had my first flare involving my low back in November it took a month, two 3 day stays in the hospital, dilaudid, vicodin, oxycodone, toradol and a steroid burst before I could function.
This flare started about 4 weeks ago, all of the above has been tried in addition to 2 trips to my chiro, acupunture (1 treatment so far) and some natural treatments recommended by acupunturist (cinnamon, oregano, tumeric, fish oil). My Rheumy is now saying I should go back to the hospital get some scans, a toradol infusion and a spinal consult, basically passing the buck.
I self inject 50 mg enbrel and 20 mg methotrexate weekly and I just feel like there should be something more to be done to nip this in the bud. I have accepted living with a certain degree of pain indefinitely and I have a rather high threshold but I can't be in any position other than laying elevated (45-60 degrees) on a heating pad with oxy and vico on board, along with topical voltaren gel. And even this is only tolerable if I don't move a muscle.
Any and all suggestions welcome. I feel like I can't leave home, when I do I suffer as stoically as possible because I hate to make my family (mom and son) feel bad. I try to keep to business as usual but I am so exhausted from being in this much pain.
I am so sorry to hear of your pain. I wish I could help you but you have tried so many things. The only other thing I can suggest is I have read a few people got a doona/quilt cover and sewed the opening almost shut and then filled it with bean bag beans and then zipped the end shut. They sleep on this every night on top of their mattress and apparently it has helped to ease some of the pain. The beans are easily moved into different positions and can be bunched up if needed. Don't know if it will help you.
I know that you are in so much pain but can you try going into a pool, it will take some of the weight off your body and may help ease the pain a little. Perhaps even try a heated spa. I'm sorry I can't be of much help to you. I hope your pain eases soon for you.
Just wanted to offer sympathy and hope. I know it is intense pain and hard to convey to your family how awful it is. I experienced a recent episode where I couldnt move for 48 hours and it gradually sudsided but only a systemic steroid injection helped me to near normal. I don't advocate this but I personally know of no other relief from the intensity of the symptoms you are describing. My advice is to make sure you have a blood test during this flare and make sure your rheumatologist and GP are aware.
Long term I would explore the naturopathic approach to diet and health- I did manage to reduce my symptoms for a while wth a very careful diet avoiding all of the usual suspects - wheat any processed cabohydrates/ sugars/, dairy and red meat as well as alcohol etc.
I found acupuncture offered some pain relief, my friend is an acupuncturist , and have had a lot of this - but it doesnt help much in an acute phase I found - You may be different though.
I know exactlly where you are coming from, I am just now recovering from my first flare which slowly began last June and only got worse are time went by becoming so bad that I was bed ridden by October. Unfortunatly my Doctor wouldnt give me much in the way of pain meds other than vicodin and tramadol which do next to nothing for the pain as you know, so I found several ways to help ease the pain. Of course as you know PsA is a tricky thing since from day to day diffrent body parts hurt.
I have found heating pads are helpful, Ice packs personally have never helped me.
My body pillow was a life saver and I also found a boppy pillow helpful (the baby feeding ones)
Aleve was helpful, cutting out sugars and caffine seemed to help me
Now this one is helpful to me but when my flare was at its worst this was a impossible task but hot baths are wonderful, hot showers help to and allowing the water to hit the worse parts however standing for to long is difficult for me
I know these are all common sense and you have probally tried all of them or a few anyway, just know that you will get back to feeling better soon, I thought my flare would last forever but it finally calmed down and now I have a pretty normal daily life again, still some pain and swelling especially if i over do anything but much better than what it was. I am now taking humira 40mg self injection every other week and mtx 20 mg pills each week the humira was my life saver mtx didnt really do much alone
Welcome to the board, Amber! I'm sorry you've joined the club, but I'm glad you're here. I wish I could offer suggestions, but I'm afraid (beyond what you're already doing) I have nothing to add.
When we say "I know what you're feeling", we really do mean it! Sounds like you are doing all the right things, and you just need to be patient and wait for this storm to pass.