Hello,
Just been 'diagnosed' with pa after 4 years of fat toe (Converse All Stars to be worn at ALL occassions including weddings and funerals) and terrible pain in the ball of my foot. Originally (for 3 years) thought to be a March fracture and Rheumatologist said it wasn't arthritic and sent me to a foot surgeon who diagnosed pa and has scheduled me for surgery in original foot to repair the damage but in the last month it has now spread to other toe joints, hands, wrists, neck and shoulders (wish I hadn't complained so much about having it in one foot now). I'm back at the bottom of the rheumy waiting list now and only have anti inflammatories and pain killers from my GP which don't do a thing. Anyway, am completelly freaked out by the sudden acceletartion of this and with a full time job and as a single parent of a fab 3 year old (I know, get out the violins) I'm stugggling to cope with the pain and tiedness (is tiredness a sympton because I can barely function at the moment?).
I'm hoping to learn more from this site and am quite comforted to find it isn't just me out here. Will try not to complain too much.
sam
Welcome Samantha. There are several of us on the board who have PA. I have the same joints involved with PA and also RA. It's been a long, hard journey but dmards and biologics have started to work for me. Hopefully, you can get in to see a RD soon. Do you have an appt.? Yes, fatigue goes hand in hand with PA. You have to learn to pace yourself and to prioritize tasks and to ask for help. Asking for help is one of the hardest things to do. Parents, friends, ex's, co workers, just ask. It will make your life easier. Am glad you found us and keep us posted on how you're doing and don't hesitate to ask questions. LindyWelcome to the board Samantha.
Lin has really said it best about everything so I just really wanted to welcome you.
There are also several people here with young children that you can turn to for support and will help you out with ideas and suggestions on how to handle everything that goes along with the energy of a 3 year old.
Ask plenty of questions that is what we are here for!!! We are also here for you to vent to. It isn't complaining. This illness can be extremely frustrating and we need a place where people truly understand what it is like to get it all out.
Thankyou. For the first time in 4 years I don't feel like I'm on my own or just imagining my symptoms. And it's great to hear that something is working for you. I don't know what any of the drugs people on the site talk about are yet or if they are called something different in the UK (dmards & biologics?) I'm going to need to take a crash course in this thing. I don't yet have another appt through for the RD and am not filled with confidence as he didn't think it was pa as at the time it had only been in one toe for so long and only have p on my leg and that only arrived last year so he thought it was coincidence. The asking for help thing isn't so easy as my family are a long way away and my mother worries so much about me I try and down play it, my friends have their own lives and my work is not really what one would call an illness friendly environment! The prioritizing is good advice though as I'm rubbish at that.
Hope your medication continues to work for you and thank you again for the welcome!
Sam
Welcome,
It's a pretty common experience for the illness to start very agressively, and slowly respond to the medications. For me, it took about a year, but the good news is that now, 5 years later, I feel much better than I did in the beginning, and the disease is pretty much under control, not perfect, but I can function very well. The important thing is to get on a medication that can slow down the progress of the disease and not just cover up the symptoms. There are a lot of good choices.
Good luck, Alan
Dear samantha, Welcome!! welcome , welcome!!, Sorry you have discovered that you have this dang stuff, but really glad you discovered the board. You have a great sense of humor an dmade me laugh. It isn't easy to be funny when you have this stuff!! It isn't easy to tell a 3 year old, sorry honey, but mammas too tired. I know that fatigue and YES we have all complained about it here. I've had to give up most caffeine because of a heart 'thing', and which helped me get through some rough, exhausted mornings. We talk about all kinds of 'flares' that cause us grief, blaming the weather, our meds, the foods we eat (sugar), and about everything else we can think of on this dumb disease. Fatigue is a symptom we are all too familiar with!
I'd suggest that you call the Rhumey's office and ask to get on the cancilation list, and tell anyone there (who will listen before hanging up) that you NEED help!! The sooner you get started with these special, super drugs to fight this 'nasty stuff' the better. It will tak e awhile for them to work even if you start taking them TODAY! Sorry, but that's what we've found. Only prednisone, a powerful steroid stops the pain immediately. Please read wikipedia about it.
Please don't consider it 'complaining' you are just explaining how you feel to people who have been there-- done that! Please, read some of the past Topics about fatigue. We all suffer the 'not wanting' to get out of bed fatigue, sleep alot, syndrome now and then! The meds will help you!
Good luck in your search for help (please get on the phone and make a friend at the doc's front desk!!) ask to see him/or her ASAP! , also when you get a prescription let us know as someone's probably taking 'it'. There are about 10 choices of new wonderful drugs to treat this.....keep us 'posted'!! , We are here 24/7 (some people never sleep) and know exactly how you feel....Lynda
Welcome to AI Sam. Glad you're here. Hi Sam...welcome!Splendid- If only the Health Service was as helpful as you lot (sorry Michael Moore but us Brits aren't always as in love with it as you think we should be). Looking forward to some grade A drugs so I can make better use of this site. Feel more positive now than have in years. Thank you.
Welcome to the board Samantha! I have a 2 year old, so I know what you are going thru there. Best of Luck on that
Hope to see ya around more and get to know ya better!
...and yes, Chris the balls of my feet are my biggest pain- feels like someone forgot the padding and stuffed a huge pebble in there instead- can't walk barefoot on anything and even have to avoid those lumpy bits at the edge of pavements that are meant to stop you slipping. Doctor recommended swimmimg as a good excercise for arthritis but I'd need to be airlifted into the pool..or wear the old Converse right up to the edge so that's a bit of a non starter.
Thanks for the sock advice though.
I know what you mean about these bl***y bumps on the footpaths, I limp over them. My friends all think I'm mad the way I go one about walking and how it hurts. I had my feet x rayed last week and I very interested to see how the joints are. I have had problems with my feet for many years that I now reckon have been PA all long. They are very ugly with crooked and bent toes. I invest in various types of shoes, the best I have found so far are ecco receptors, they are dear here in Ireland but they last a long time. I also keep an eye on ebay for a bargain. I started back swimming two months ago and now swim nearly every day. I get fab relief from the pain and stiffness in my joints, if I miss two days in a row I'm like a train wreck.Hi Samantha and welcome. Lovely name, my favorite neice's name too. I hope you get some releif soon. I know what you mean about your feet. I am always limping around. I can't stand socks or shoes on them. I also don't like covers or blankets to touch them.
Best wishes for some fast results for you
Since we kind of touched on the subject of feet here...is anyone else besides me the most comfortable without shoes? Hi and welcome! I hope you get help soon and the right mix of drugs work quickly.