Thank you for your advise I appreciate it a lot regards Trishey
Jules said:
Hi trishey47, I hope beyond hope that you do stay with us because we can all help to support you through this difficult time. Pretty much every one of us has laid there in bed in such unbelievable pain at one or more times. When it was me I couldn't believe that my doctors didn't have a analgesic drug in their armoury that would take away my pain and make me feel well again .... and I raved and ranted at them and the world for leaving me to suffer. It must be so much harder for you as you're the one used to helping make others better, your own illness adding frustration to the mix because you're struggling to help yourself. I totally get this.
As everyone else has said it is getting onto an effective treatment regime to tackle the underlying disease that ultimately gets to grip with your pain and mobility. Methotrexate is normally the first DMARD of choice the world over, for some people it is a wonder drug for others it's effect is very limited or ineffective. Unfortunately whether you are on a single DMARD or combination of DMARDS none of them work instantly, it takes weeks if not months. Same if your treatment is escalated to include a biologic, it can take a while to see its full effect. I think the best way I can describe my own treatment journey is as a marathon rather than a sprint.
One of our mods on here, Jen, also lives in Australia. I think she's travelling on business at the moment but I'm sure when she catches up with these posts there may well be some insights from her on how the treatment plan works in Australia. This may well help you get your progress speeded up.
In the meantime I send you the warmest wishes. I've also attached a body map that I use to mark up/make notes that I take to my rheumy to show him what is going on for me. As others have said I find I get the best outcomes from my consultations when I relate my disease to specific functional issues.
Well there you go... The real bugger about this disease is that the parts of the body the autoimmune system attacks and leads to inflammation are the same parts that lead to pain control, and lead to a chemically induced "depression/fatigue' Consequently we are tired/fatigued when we are not (it doesn't feel any different) we at the lows are convinced we will NEVER get better, and we force ourselves into a downward spiral that unless we fight and fight hard we stay in. WORSE treating the outward symptoms makes it worse.
I'm glad you are starting to function. I hope you can clearly see the effects of backing off a bit on the OTC stuff, adding the kick ass inflammatory meds, along with some regular PsA meds, backing off the pain meds (we all likley have a stash somewhere for emergencies - you have to do what you have to do) Take advantage of your improvement all you can. ANYTHING you can do to get the natural endorphins going will speed things up for you. Aerobic exercise may be out of the question, I realize, but that movement any movement is critical. heres to moving forward.
Read Seenies article about the "Gap" that's where you are at. We ALL can relate. I suspect you have figured out this is a different kind of support site. These are all folks who want to get better and pull no punches about how it really is. You will come in time to appreciate that.Thats real support.
trishey47 said:
GrumpyCat thank you.
I have seen a rheumatologist I am on prednisone but to take it through out the day as this might help me better than all at once, and I must admit today I have been able to function which has made me happy. I am also on methotrexate which I am to believe will take a few weeks to work. I'm to start Morbic ( anti-inflammatory) and to take panadine forte for pain. He also said to remain on targin until everything started to work then reduce targin and finally to stop taking it.
I am soooooooooooo happy to see you have come back and more than pleased you've seen a rheumy and have a treatment plan. You've taken the first step. Hang in there ..... and back here with us as much as you need to.
what great news to hear, Trishey. Don't underestimate the grip this disease can have on your emotional state. It is easy to say "I can't" to just about everything because, like lamb says, the disease makes you think that you really can't. Consequently your life gets smaller and smaller. And that's downright sad. But with enough of the right kinds of anti-inflammatory and DMARD drugs on board you'll come to see that you actually CAN do all kinds of things. Some of them you do more slowly, some of them you get help with, some of them you modify to fit your level of disease. Just stick with the program and do as much as you can every day to move (even from bed and/or from a seated position) and this will help speed up the process of getting back closer to "normal".
All good wishes to you.
Sometimes I think that Dr's are in to much of a hurry and they really don't listen. I have had psa for 20 years. Ive tried lots of different meds. some have worked and some haven't. My biggest complaint is that I hurt a lot and my dr won't prescribe me any pain meds. I've been taking ibprofen but it does nothing for my pain. so he game me predisone but that doesn't help either. I have nausea and he won't give me anything for that. he just says make sure your taking your folic acid. I just found out that I may have carpal tunnel in both my wrist and he just told me to wear wrist restraints at bedtime and see if that helps. well when I took them off this morning I hurt. I just don't know what to do anymore it is getting harder to work. I'm only 33. What over the counter pain meds have worked for you?