Hello,
I have not been diagnosed yet but have my appointment with the rheumatologist in December which is forever away. I was diagnosed with vocal cord dysfunction in May of this year. I go to National Jewish and my doc thinks I have Psa also. I have the psoriasis, the weird looking nails, lost 15 lbs out of nowhere, baker’s cyst in July and now lots of pain in my knees (with redness) and my hips. I have also had really bad fatigue. I started taking DHEA because I heard it helps with the fatigue. I am a stay at home mom to a 11, 8 and 3 year old so being crazy tired at 11 AM is just not good lol. It has helped the fatigue but also maybe the pain too. I went off it for a week and in that week, within a couple days, my pain was back and had increased. Is this just a coincidence do you all think?? I am incredibly new at this and just trying to make it until December. Thank you for your replies.
Hi @Jillian ,
So sorry for the delay you’re facing in waiting for an appointment. Can you call and ask to be on the cancellation list? Can your doc at NJ help speed things up?
For many of us the fatigue (along with the swelling and pain) is our first sign that things are off. Fatigue is a clear signal that your body is fighting something (probably inflammation for you) and it’s working overtime to get you enough energy just to get through a day.
Maybe the DHEA helps. Maybe it’s coincidence. Many of us add supplements, add exercise and/ or impose dietary restrictions as a way to help stay healthy. But these are supportive efforts to our bigger treatment plans. Getting on an aggressive treatment plan that is clinically proven to help the symptoms of your disease is critical. Without arresting your disease by using disease modifying anti-rheumatic drugs, your road to getting past 11am without wanting to face-plant into that pillow will not be an easy one.
We have all been in your shoes. Waiting for a diagnosis. Waiting for a treatment protocol. Waiting for the meds to kick in. Waiting for improvement. But most of us have experienced significant relief from pain, swelling and fatigue with our treatments.
There are members of the site who stay home with their kids–some even home school. But all of them have developed coping strategies for when their disease is flaring up (which is kind of your situation as you’re untreated right now). What I’ve learned from them that works is about planning and getting help. Are there moms that could help you with your little one on occasion while the other kids are (I assume) at school? You may well just need to take a nap. Really!
Let us know here if you need more moral support. We’re here to listen.
I am on the cancellation list but I have been told it is pretty long…I call about twice a week to see if they have had any cancellations. What supplements have you heard about? I use the ginger supplement also. I try to walk about 45 minutes a day and do Pilates to help the joints but when you feel awful it doesn’t always happen. It is amazing how fast this can hit you!!
It is amazing how this disease can hit you and knock you over, isn’t it? I don’t know about the supplements, except that very few people get significant relief from anything except rheumatologist-prescribed meds. Still, if you think they do and your doctor is OK with your taking them … why not?
I assume you’ve found our “Newbies’ Guide”: this is a good time to learn as much as you can about PsA so that when you get to the rheumie you will be able to make good decisions about whatever the rheumatologist suggests. You definitely don’t want to be shell shocked and then have the rheumatologist suggest that you come back in three month’s time when you’ve got your head around treatment decisions.
Good idea to make a friendly call to inquire about cancellations. You never know, one of these days you may call at just the right time and have them say they have an appointment for you.
Many of us have found that movement in water (whether swimming or walking or just stretching and bending) does wonders to reduce pain levels. In any case, great that you are keeping yourself moving: parts that don’t move, rust. And rust hurts.
We’re glad that you joined us, Jillian!