Well, I guess it's my turn to rant, because I can't take it anymore, not by myself at least. My feet have been killing me lately, especially the right one. I can't stand on my feet for more than 15 minutes. I can't walk. I have to ask my boyfriend to slow down all the time, and I just hang on to his arm while I try my best not to cry or scream with pain. What a wonderful girlfriend to have when you're still in your twenties, huh?
As some of you might remember, I've been wondering about my feet for some time now - hi, Seenie! -, never quite sure if my ankles are swollen etc. Well, there's no doubt about that now. And it's not just my ankles. MY WHOLE FEET are swollen. Even the soles of my feet. I feel like I'm walking on achy squishy bubbles. I spent my 27th birthday limping - there's a new age to look forward to. And there I was, thinking 26 was the worst year ever!
And I feel the depression kicking in... Oh, do I feel it. Every color is tinted with grey. It's one grey world. My body has betrayed and deserted me - my only connection with my body and the world is through pain. Other than that, I'm just one floating shadow. I don't even feel my existence, the only thing I feel is pain and frustration. That's my whole existence. I've tried to be upbeat, I've tried to push through it. But lately I feel like I'm losing this battle - and this is just the beginning, I have my whole life to look forward to for more pain and frustration!
I have an appointment with my rheumy on Thursday - but right now, I just want to chop off my feet and call it a day.
I am so sorry you are in so much pain. Sometime I wish I didn't have knees! What really helps me the most is ice. I don't now if that would help with your feet, but I just put ice on for about 20 minutes and get my knees good and cold. The pain is greatly diminished when they are "frozen". I will put ice on my knees several times throughout the evening, and right before I go to be to help me fall asleep. I hope you get some answers and pain relief on Thursday at your appointment. I can't image how frustrated you must feel as such a young age. I am 54 and feel frustrate (and sad) sometimes at the thought of pain the rest of my life. Hugs!
I feel like weeping for you. I do know what it feels like to have feet that are on fire and about to explode, and it’s not nice. I am so glad that you are going to see the rheumatologist soon: in the condition you are in, the rheum is the only person who can deliver significant relief from your suffering. But unless he knows how you are feeling, how the depression is setting in, now your feet are agony, how the pain is dominating your life, he won’t do what you need. Be brutally honest, tell him exactly what you have said here and drop the “I’ll push through it” mask. Will you promise us that?
Please don’t forget, LL, that you are still in The Gap – that painful void between diagnosis and finding a treatment that works for you. It does get better and it will get better. It will. And your sweet and caring boyfriend knows that. But now you need to push, not push through the pain, but push for a treatment plan which promises progress. And it sounds to me as if aggressive is a word that I’d use with that rheumie.
Had you thought of bringing your boyfriend along to the consult? Perhaps he could describe to the rheumatologist just what you are going through from an observer’s point of view, and how he can see this dastardly disease is affecting your life and your life together. Just a thought.
And on the topic of cutting off your feet, I went to the foot surgeon in June and commented to him that I’d be perfectly happy with an offer to amputate my feet and fit me with blades like Bladerunner. With a straight face he replied “I’d never do that because I’d be too afraid of your shooting your top model lover through the bathroom door”.
It does get better. It will get better. Believe that, LL.
That’s just how I felt with my wrist - I was telling my mother-in-law when trying to describe the pain! I can’t offer any advice really except to say it will get better when you find the right treatment. I’m now on max dose of injectable mtx and my pain is gone so long as I don’t do too much with the wrist… It’s so hard to stay positive when all you can think of is the pain, but I feel that you will come through this.
Aw, LL, I just saw this now! And, I missed your birthday! Happy 27th and I hope this year is better than last for you! ($#+&&y that it's starting out so badly!) Yes, an axe probably wouldn't feel any worse, I'm sure! But, hopefully, you'll get some better meds for that horrible foot pain. I mentioned Nortriptyline to you but your pain sounds like more than neuropathy. Anyway, you have a lot on your plate with your SI joints and feet. Any kind of relief can't come soon enough. Hang in there! :-(
Its hard not to hit a wall at some point with this pain and it sucks. I remember mine and I am sure there will be another. We are so accustomed to going to a doctor and getting better, healed if you must. Heck even cancer patients have a chance for a cure and the rest of the world knows what cancer is. We are stuck in a place of ignorance from others and a disease that rarely “goes away”. As silly as it sounds your frustation, anger and depression will pass but it will also change you in good ways. Our brains and feelings are stronger than our bodies minus the short term foggy forgetfulness and that I believe is reaction to pain. Its like Stephen Hawking one of the most intelligent minds of our time trapped in a body that failed him. Yet, his mind is beyond successful. Rant, scream, let it out that’s very human and we get it. Just don’t give up. You are young and deep I can tell by the painting you chose as your photo. You will get through this and be better person for it. I always joke about removing my bad rib I don’t need it but man have I learned a lot because of it! Enjoy that wonderful man you have for a boyfriend, he sounds like a keeper! Wishing you better days and better years!
Thanks everyone for your support and suggestions... It sure makes one feel not so alone...
Needs answers - thank you for your concern and suggestions... The truth is, I'm afraid of using cold on my feet, since my stomach and bowels are so sensitive, I'm afraid freezing my feet would make me vomit or have the runs... I don't know if that's an irrational fear :) But now that I come to think of it, I used to have very cold feet all winter for all my life, my feet would feel frozen constantly. But this winter they are mostly warm... Hımm, maybe that's an upside of PsA and inflammation? :)
Seenie - I promise I will be completely honest with my rheumy... I will tell him everything and ask all my questions. He will have to force me out of his office :) And I will definitely ask for some kind of imaging for my feet. This is not normal. Especially this squishy feeling at the soles of my feet. I could barely put my right shoe on this morning, that must mean swelling! The Bladerunner thing is funny, you made me smile as always :) I hope that it will get better... I'm certainly looking forward to my appointment with the rheumy.
Mataribot - Let's do it together if things don't get better :) You can help me walk and I can help you open jars etc... But my wrists are starting to act up too, so I can't promise a long term help :D
Golfnut - Thank you for your support! I hope that we will all come through this...
Grandma J - Thank you very much... I have always dreaded my birthdays, don't know why :) Being in my late twenties doesn't help much either :D
Once again, thank you everyone, so much for your support... I was feeling completely lost last night, and when I read your comments my mood got much better...
I should also have included I am a cancer survivor. Cervical at age 19-20. Do not want to minimize the difference just the lack of knowledge and/or compassion between the two. Mtx is a chemo drug but small dose. Radiation and strong chemo are different. Please do not over read the post I have no intent on attending anyone.
We hear you, Rachael. Having cancer at such a young age is awful, plain and simple. Of course you didn't mean to offend. But the lack of knowledge and compassion for PsA is one of the things which just adds to our problems. A while back, there was a thread on which we designed imaginary business cards to explain PsA. We had a good laugh imagining handing over a little card, explaining PsA in 50 words or less, to someone who starts the "have you tried drinking turnip juice" routine.
MTX is an interesting drug, with many uses, depending on the dose.
Rachael, hello, first of all I am sorry we must have posted exactly at the same time, or within the same hour, I don't know how I missed your reply since it's above mine...
What you said about minds and feelings being stronger than our bodies are quite motivational... since I always wanted to produce something worthwhile with my mind and imagination... yet the pain sometimes interferes with the thought process, I'm trying to find a way around pain...
And you surviving cancer at such a young age! I really don't know what to say. You must be a really, really strong person. And it sucks that you have to live with PsA after beating cancer. And no, of course I wasn't offended by you mentioning cancer.
My bf was very sweet today, although we had to stay home because of my giant right foot. I just feel bad sometimes that I'm not actually the only one in their twenties living with this condition in the house. There are two of us!
Anyway, thank you very much for your reply, and again, sorry I missed it earlier!
PS LL, have you taken a picture of your very swollen foot, just in case it decides to clean up its act the day before you go to the rheum? Having a record of it is also a good idea in case you end up being referred out to another specialist at some point. More than one doc has been interested in the pictures of my feet which I have on my phone. (I even have “before” pics which I took one time when I was on prednisone. I woke up, looked at my feet and thought “THAT is what they used to look like!” and I snapped the pic. That was the last time I saw them like that.) The strange things these PsA peeps do! LOL
Oh Ladyllazarus you will make your mark! Remember your only limitations are the ones you give yourself. My hands are swollen as heck today but here I am responding because I can. My cancer was caught early mainly surgically corrected very lucky. I chose no radiation and have still been cancer free. Have 2 great kids now which I was most concerned at the time. Had to have c sections but they are now common. I agree with Seenie on the photos. I took pics of my hands for my rheumy and she loved it. The swelling comes and goes and usually on the day of appt of course. Hang in there reflect and don’t forget to breath!
Yes Seenie and Rachael, I followed your advice and took photos of my swollen feet, but I’m not sure about how useful it will be. I know that they are swollen but there are no pictures to compare the doc will just have to take my worc for it - lucky for me, he did that the last time I was in.
Sounds like a good rheumy. One that listens! I like mine but my Primary is amazing if it wasn’t for her I would have dropped Kaiser a long time ago. Once you get your pain managed and inflammation under control should have a much better outlook. Hope your appt goes well. Let us know what he says.
How I understand how you feel! There are times when I wonder if my feet could just be soaked in a numbing material to stop the pain! My heart goes out to you! You are in my prayers! The depression is real. Seek help from your doctor. I daresay that most of us with PsA take some form of anti-depressant. It is part of the disease. Chronic pain tears down the phyche so we have to build it back up. Blessings and peace my friend.
Clinical studies show that the PsA disease actually can cause depression and of course compound it with pain and limitations and you definitely have a cocktail for depression.
the doc will just have to take my worc for it - lucky for me, he did that the last time I was in.