Thanks, Jules G, I appreciate your message, and I know things could be a lot worse. I'm not in a wheelchair yet!!!!! And I'm sure Enbrel is still helping me from getting worse--the problem is, this all started a few years ago when I had such horrible neuropathy, I think. From there, my feet always hurt and burned a little bit on the tops, but not enough to cause me concern. Unfortunately, I tend to try and tough it out and always hope things will somehow get better! With PsA, that's just not how it works!!!
My rheumy did suggest making an appointment with a podiatrist--in fact, I should look at "My Chart" online and see if he already scheduled an appointment. And, I wore orthodics back in my 40s when I had plantar fasciitis and they helped my feet get well, so I would definitely consider wearing them again!
Jules G said:
Grandma J, I'm sorry this isn't better news for your poor feet but at least you and your rheumy now know exactly what has been/is going on and give you a proper baseline that can be monitored to make sure the Enbrel is protecting you from further deterioration. I know I 'go on' about orthotics but now you know exactly where your damage is, I wonder if you would benefit from seeing a biomechanical podiatrist who, if it's appropriate, can get you custom orthotics which might help offload some of the stress put on the worst damage. I have two pairs of orthotics, one just a general pair but the other is specifically designed to reduce the pressure on my 2nd left MTP which has quite a bit of damage .... when I'm getting a flare of pain there they make quite a bit of difference.
As for the best imaging? The x-rays I've had done have been great for bones, the ultrasounds great for inflammation of soft tissues (and guided steroid injections into bursae and joints) and the MRI's ..... well, they seem to show both but in a different way. My jury is out on the real benefit of my MRI's until the surgeon has been in to my knees and I know whether what he finds is the same as what the MRI 'saw'.
Hi Rachael--yes, it isn't good news, but I'm getting used to this "condition" more and more each day! It's so weird because sometimes my feet hardly hurt at all, but an hour later they can be killing me. On Sunday I went to the pumpkin patch with our daughters and grandkids. We had to walk about a block from the main gate to the "patch" and my feet hurt quite bad as we were walking there, so I was limping and couldn't go very fast. We hung around among the pumpkins for about a half hour--I mostly stood and did very little walking once there--and when we walked back to purchase our pumpkins my feet hardly hurt at all! When I get out of a chair or from bed in the morning, they hurt really bad for a minute or two, and then it eases up some. I can't really bend them at all because that sends a sudden sharp pain through the arch that hurts and stings a lot and I usually let out an unexpected yell. I've adjusted how I walk and how much I walk--I avoid long walks, but still manage short distances okay. When I do stairs I don't bend my feet--try it--it's plop, plop, plop and very slow like an old person.
Not fun, but I'll live. Thanks for your kind thoughts!
Rachael said:
Oh GrandmaJ, that's not good news, but I suppose it's similar to diagnosis in that now you know. Now it's just figuring out how to best apply that information. I like Jules reasoning of using it as a baseline for knowing the damage. This got me going and will ask for xrays I have been avoiding thinking there was no point in them. I also looked up (based on suggestions from a different discussion) fitflops and will be searching for a retailer nearby. Still surprised your doctor did not offer injections only an oral steroid but then again knowing how tough you are ( understatement for sure) you'd probably turn it down. There is nothing wrong with that however you cope with symptoms is up to you but so glad you took that step for Enbrel and hoping for the best prevention wise. Hope you're doing a little better today.
'plop, plop, plop and very slow like an old person' - yep, that's it. The flat-footed waddle. My granny used to walk like that and to my young eyes that was just how old people were. But now I realise she would have been in her early 60s when that started, or even younger. She didn't do herself any favours, but perhaps had she had a diagnosis of PsA, which is what I'm pretty sure was going on, instead of the dismissive label of the time: 'just rheumatism', she'd have been less fatalistic and more proactive.
You're a lively person Grandma J. Hopefully the feet will improve. My feet are similar to what you describe, not quite as bad but it's lasting & I feel the same: damn, another thing, how to handle it? How to get on with life the best I can?
Fitflops aren't for me. They have a shaped foot bed and one of my feet is nearly a whole size bigger than the other. So if one foot bed fits the arch, the other doesn't. The search continues because I have taken on board the need to stop living in sneakers.
Yes I definitely have this and it is very problematic. If I find a comfortable shoe I try to stick to it. I try to avoid salt. I feel that pedicures help. Does anyone else find this helps?
Havenāt found anything that helps but off to rheumy in an hour for steroid injections in feet - cannot wait as this week has been especially bad and added to that, itās raining and the only shoes I can stomach are Ecco sandals so I look a bit strange with my raincoat and sandals.
Oops just remembered - I do āwrapā my feet up in kinesiology tape which sort of helps ā¦
For sure, roni pam, I find pedicures help. I donāt know why ā is it the soaking, the massage, the professional trimming and filing? Or is it just the feeling that I am being kind and nice to my poor beleaguered, disease-ridden, beaten up feet? I donāt know. I do know that when my (deformed) feet look pretty, it lifts my spirits and when I am floating in the pool doing my exercise routine, seeing deep magenta toes that match the stripes in my suit makes me smile. And smiling has to be good!
Well seenie - injections done - most excrutiatingly painful thing Iāve ever had in my life - now wait to see if they work! On a low note he will not put me on enbrel yet as I only have 3 joints affected by psa (he feels that all of my other pain is being caused by fibromyalgia). Anyway have appointment at psa clinic in November so will wait to see what they say
This might sound silly, but I was always embarrassed about my big, ugly manly feet! So, I never went in for pedicures and usually wear closed shoes, or when I wore sandals to work I'd always wear knee high nylons and when I wore flip flops I had jeans on, so my feet were never "out there". I used to say, maybe I should appreciate my feet because they did a really good job of getting me where I wanted to go....I never went on long walks just to walk, but back not so many years ago I could easily handle a day at the amusement park, zoo, shopping or sight-seeing and not complain about sore feet.
I think my current foot dilemma may be my punishment for being so thankless about my strong but ugly feet!!!!
Thanks seenie you made me smile. I ordered another pair of sneakers today. I just keep ordering and sending back. I don't feel well enough to actually go shopping. Hoping this latest pair is a keeper.
Oh, go on, Grandma J. Time to do something new! Get a pedicure, with polish and everything!
Roni pam, I posted my thoughts on pedicures, and thought āThatās it!ā. Got in the car and drove straight down to the new nail salon in town. They have great chairs, and I enjoyed the massage and the attention. My toes are now deep metallic magenta, and knowing that has put some spring back in my step. Silly, I know. Itās an indulgence that I love!
Golfnut, I have to tell you that is very disappointing that your doctor won't put you on Enbrel because you "only" have 3 joints involved and the rest is fibro. I had a lot of joints involved, but I also had what seemed like fibro but maybe it was pain radiating out from my joints. Because I had sort of a general mild flu-like, achy and feverish feeling all over. Also, my swelling was/is subtle, it's never like some whose is very noticeable. Anyway, Enbrel totally cleared up that all-over sick feeling that some doctors might not have thought was a PsA symptom.
I hope your doctor keeps a close eye on you for more joint involvement or realizes that what he thinks is fibro could well be PsA.
Golfnut said:
Well seenie - injections done - most excrutiatingly painful thing I've ever had in my life - now wait to see if they work! On a low note he will not put me on enbrel yet as I only have 3 joints affected by psa (he feels that all of my other pain is being caused by fibromyalgia). Anyway have appointment at psa clinic in November so will wait to see what they say
My daughter had wanted to take me for a pedicure for my birthday last month, but things kept getting in the way. If I'd get the nerve I'd probably want to do it often. I'm sure it would do my feet good, Seenie!
Seenie said:
Oh, go on, Grandma J. Time to do something new! Get a pedicure, with polish and everything!
Roni pam, I posted my thoughts on pedicures, and thought "That's it!". Got in the car and drove straight down to the new nail salon in town. They have great chairs, and I enjoyed the massage and the attention. My toes are now deep metallic magenta, and knowing that has put some spring back in my step. Silly, I know. It's an indulgence that I love!
I had a pedicure once, my other half arranged it as a birthday present. It was done by 'the woman round the corner'. Do not go to her! Things started badly when she asked "where on earth did you get these from?" (She was referring to my feet, I should have asked the same about her miserable face.) Then she decided to remove a wart. Fortunately I didn't have far to limp home and the blood hadn't quite soaked through to my shoes by the time I got back.
OMG in heaven, Sybil! What a witch of a pedicurist that woman was! Yes, you should have come back with sarcasm. I have to laugh (sort of) because when I had plantar fasciitis the foot p.t. guy told me I had manly feet--I always wished I had said something back, like my feet, your face! Oh, but I guess that would've been a compliment. :-/
I've had my nails done twice, for two of our kids' weddings, with the fake gel nails. They were so annoying and uncomfortable. That's probably why I'm hesitant to get my toenails done. The other reason is because my two daughters got mega warts around their fingernails from getting them done, and it took quite a while to get rid of that. I guess I wouldn't go to the same place they did!
Haha, wanna-be pedicurist turned surgeon! WOW, that lady wasn't narcissistic, was she?????
Thanks grandma j - I have to say I think theyāre all related to the psa myself but hell what do I know?? In the last 3 weeks Iāve had swollen lymph nodes in both groins so that I have been unable to lift my legs at all, pain in neck so that I couldnāt turn my neck and hand pain waking me in night - they always only seem to last for 2 days then go elsewhere ā¦ On a positive note - I have now recovered from the trauma of the steroid injections in feet and for the first time in a year and a half have NO foot pain! Itās fab! Am gonna now walk BARE FOOT to have a shower and pick out some pretty shoes to wear!! I may also treat myself to a pedicure now that youāre all having one - donāt wanna be the only one with really ugly feet!!
Golfnut, congratulations! Have had two rounds of those injections but never regretted it yet. Amazing how it lowers the inflation so quickly but beware though not to overdo it too much. Now I guess I have to get a pedicure too, lol. Enjoy the journey!
Golfnut and Rachael, you're giving me good reason to get injections. We'll see if the podiatrist suggests them. I guess they can't stop the bones from rubbing together, but they could stop the inflammation.
Yesterday and today my feet have been worse than ever. Maybe I should chop them off and get fake ones!!! :-(
