Hi Mary,

I have not yet been diagnosed with RA, however, I have the same kind of pain in my right foot. Only the top of my foot hurts, when I walk barefoot (or with socks), on a cold surface. Sometimes, it hurts while wearing shoes. It's really weird. I get the burning pain in my ankle. I do have a herniated disc in my lower back, which usually affects the left side. So, I don't know if this is from something else, or if it is from the herniated disc.

I'm waiting for an appt. for an ultrasound of both of my hands. I mentioned the pain in my foot to my family doc, and she told me "let's wait til' we get your hands figured out". So, does she think it's something entirely different? Who knows.

I also have a syrinx, which causes neuropathic pain, like the burning sensation. I am on amitriptylene for that, and it usually controls the majority of the "nerve pain" that I have. It doesn't do anything for the acute pain that I feel in the top of my foot. Which makes me think that it isn't from the nerve, I feel it deep in my bone. I wonder if my arch fell? I don't think so though. Oh well, another enigma.

I do empathize with you, you're not alone, and you're not going crazy. Hang in there.

Rebecca

Mary, I feel your pain. My feet and hands have been the most problematic part of RA for me. To muddy up the waters I have OA in both the feet, hands and knees as well. I have found the first thing you have to do is invest in good shoes no matter the cost. They should have a wide toe box. I find merrells work great for me personally. I have been on gabepentin ( like lyrica) for the foot pain and it really did no more than make me loopy as heck. I too used pain patches flector, which did little for how much they cost. Orencia got me on the road to recovery. It lasted for about a year and a half then quit and my fet went haywire agin. I am now on rituxan and my feet have pretty well calmed down. They still hurt terribly when the weather is going to change ( barametric pressure) but overall the biologic has helped. The residual pain I now have the doc says is from OA which the biologics don't touch. Do you have RA? Are you taking any RA meds?

Mary.
A few of us have posted with this kind of pain. Mine was right before christmas and it was the beginning of a flare, as it usually is. The only things that helped me were, a Medrol taper and an ace bandage. It took some time for the steroid to help, around 5 days and I still have pain in that area, but I'm able to walk ok now.
Others posted using ice. I agree, it is crippling. Try the steroid taper if you can and see it it helps.
Hugs,
Joanie

My right foot pain is just as you described. On top of my foot from the second/third toe into top of foot. Feels like toes are moving to the right. Very painful to touch and walk on. And I love to go walking. It's like you can't win! When I walk it makes me and my muscles relax. And now my foot is hurt, so I can not walk. Ugh!!

What I'm doing to get it better. Well taking 10mg prednisone until see if enbrel kicks in second time around (just had first shot). Use frozen limas in gallon freezer zip lock bag for ice bag. Apply several times a day. That really seems to help. And compression. My foot is too sore to wear ace bandage so I have gotten "self-adhesive" bandage and wrapped around foot and then around ankle.

When this pain was in my arch (plantar fasciitis) I used a dorsal night splint at night and frozen water bottle to roll arch on, but the pain on top of the foot does not respond to wearing splint at night.
Wear very supportive shoes during day and try to stay off of it for few days.

I agree-this bites! If it was in your neck,shoulder,fingers-you could deal. But you need your feet to walk on. I was hoping that this foot was just a hurt foot but after reading all the threads, I feel it goes back to RA. I remember a year ago when I had a "little" cramp in my toe and whined to my rheumatolgoist-I long for those days again.

Okay, this is working! This morning wrapped foot using "self-adhesive stretch tape" got from Walgreens drugstore in 2 inch width. Wrap kind of tightly around top of foot (my pain starts at about the base of toes) few times and then wrap around ankle. I secure it with a piece of masking tape since the flex tape does not secure after a few times. This gives it a secure fit and I can use tape several times.

This seems to be giving my foot the compression. An ace bandage does not cover that lower part of foot and is too tight on my upper foot.

Try this. It seems to be working. I use the "self adhesive" tape just around ankle to give support when walking. But my lower foot hurts now. This is giving the foot support. Also wear really support shoes-athletic shoes if possible for support.

Good Luck!

Cortisone shots help, on feet. I get the heel pain, and the joint on top of my foot hurts. He gives me the shots every 6 months. It's almost instant relief, the next day my heel pain is gone. And the top of my foot is so much better.
He gives me the shot on top, where the joint is.

There are many joints in your feet where each of the little bones come together in your forefoot between your ankles and toes. Each of these joints is a place where you may get pain...bone on bone just like in hips and knees. One solution once this is diagnosed is to fuse the offending bones together so they won't rub anymore. I had one such surgery and was non weight bearing for MONTHS. I have in the pst had cortisone injections in my feet by a podiatrist which were very helpful. In the 18 months I have been on Rituxan I have had an improvement in my foot pain but when I am on my feet alot they hurt like crazy. I can never walk barefoot, I always need a sole under my foot even if it is slippers to protect the joints on the bottom of my feet. Sorry for oyur pain, I can sypathize!

Mary,
Yes I know your feeling! Mine hurt too when I have a flare and they burn! I also have been having ice cold feet....not sure what that is yet. I have to ask my Doctor when I go see her next week. I'd rather have them be cold than hurt though. Have you tried any RA medications? I see that you are diagnosed with Lupus but how about RA? I know this is frustrating and hard to deal with! I hope you feel better soon! Take care.

I have the exact pain you describe, plus "grinding" pain in my metatarsal joints.
I don't have RA, I have SAPHO Syndrome, which causes Synovitis (horrible synovitis). My hands/wrists, feet/ankles are my most troublesome areas (so much connective tissue and somany synovial joints).

Although, since I have been on Mobic, this pain in my feet has dropped significantly. However, if I over do it or am in a flare, nothing touches it.
Mornings are worst for me. I can barely make it out of bed, let alone steps for at least an hour after waking up. Usually longer.

I don't have an answer, but I can completely sympathize!

My right foot is killing me right now. I replied earlier that I was going to try compress my foot by wrapping it in self-adhesive bandage. I did that today and wore my athletic shoes all day. It was okay. But as soon as I took off shoe tonight and went into a my Merrell clogs, the pain came back-intense. My pain is on top of foot-feels like joint in between large toe and second toe. Entire top of foot is inflammed.

I'm thinking cortisone shot is in my near future. Had one in that ankle last year and it was good for about 3 months. I am currently on 10mg prednisone since I have just began enbrel (second time around-that is another story) but the prednisone does not seem to be touching this foot. Prednisone is taking care of other pains, shoulder,neck,fingers,knees. So I'm thinking it's more than RA.

The only thing is I am just getting over this upper respiratory cold and if I go get a cortisone shot I will be around all those sick people. However, I can't try to get better as long as I am in pain.

thank you all so much for your great advice! I dont know what I would do sometimes without DS! To answer a few of your questions, I have been diagnosed with MCTD, Lupus (SLE), Sjogrens, Fibromyalgia, and most recently RA. I am starting to think it is the RA causing all this pain in my feet. I just had an MRI today on the worst foot. I take prednisone ( every day for 7 years now), Orencia ( as of today, no doctor does not think its working at all) , and lyrica, along with pain meds, lidocaine patches, effexor for depression. I have been on plaquenil, immuran, cellcept, and methotrexate before starting Orencia infusions in early Sept. My pain and CRP and SED rate have been consistently very high despite all the treatments they have tried. My rheumotologist told me for some reason all my autoimmune disease is very treatment resistent. I also have so much inflammation in my hands and wrists that I have permanent damage now to the median ( causes carpet tunnel) and the ulnar nerve ( thumb) and I mistakenly had the surgery for carpet tunnel which made it 10 times worse, I wear a brace on both hands 24/7along with lidocaine patches, and it still is pins and needles very severe all the time, I have alot of trouble using my hands for much. typing like this takes forever with lots of typos. My doctors in Boston ( a great team of specialists because I am fairly rare) are trying Ketamine infusions, I only have had one, and it did over time make my hand much better, but its worn off completely, and now with the foot going haywire I am scheduled for a 2nd infusion in a few weeks, thank god. Last time it did not help my feet at all, but I am praying it will this time, the pain is just so bad...
My doctor told me I had seronegative RA, which he explained was really RA without the blood markers, and tends to be less deforming of the bones, but the way I feel, I cant see it getting any worse. I did forget to mention I do have Myasthenia Gravis, but it would not cause pain like this. with my feet burning so badly, and so painful like all the bones are broken, that what it feels like to me, like a big boulder was dropped on top of my foot, its so confusing to figure out what is causing it, my rheumy doesnt get too concerned with which "name" it is causing it, since they are all autoimmune, they all overlap, and all are treated the same. Anyone try orencia? He told me when I switched to that if it did not work we would have to go to the big chemotherapies, and I am very nervous;. rituxan I think is one has anyone been on orencia and it failed , then switched to something else? thank you all for your help, big hugs to you all,
May you all be pain free and have a happy and healthy new year
Mary

Mary,

Just joining the chorus here of "I understand"! Really the foot pain is so so awful. Like you, it is really compromising my life.

But I will say my SAS orthopedic shoes make the difference between walking and not walking. They are ugly but I just don't care. I wear them to the bathroom even.

I have pain from neuropathy and RA, and includes every part of my foot. Worst is ankle, but achiles tendon, plantar faciitis, toe joints, arch cramps. Crazy. All came on at once (in one weekend) with aggressive sudden onset RA.

Anyway, Mary, you have a lot to bear, a lot of serious diseases. I'm glad you found this group.

PS Please don't stand in the kitchen to cook! This is the one thing I'm proud of myself for figuring out. I do almost all my cooking sitting down (chopping, etc.). Then do lots of slow cooker meals and other things that don't involve standing. The great thing is that this enables me to keep cooking, which I love to do and my husband loves too. We still eat really well and healthy, despite my limited standing in the kitchen. We also tag team a lot -- I do all the prep sitting down, and then he throws it together at the stove.

Mary, you make my problems sound trival. But calling "uncle" on the foot pain. Called Rheumy today. Waiting to see if I should go get cortisone shot in foot (already on 10mg prednisone while waiting for enbrel to kick in second time around (don't get me started about that). I am even ready to wear a "boot" on foot for several weeks if that would help foot get better. That right foot started with bad ankle (hurt in zumba (don't do that anymore!), plantar fasciitis, cramped toes and not where big toe meets second and third toe on top of foot in pain. But I have noticed if I am off of it, it does not hurt as bad. Hurts worse at night. So I am wondering if it got started by RA but is just a hurt foot.

That is why I am thinking about wearing "boot" to get off foot for several weeks so it can heel. Ready to take more progressive measures so I can begin walking again when weather gets nicer. Going to get out my knitting, and sit for a spell.

again much thanks to all of you for sharing with me, it really does help to know I am not alone! I have learned to cook, prep, everything I can do sitting on one of my island chairs. I even pull up an extra one on each side of me, and put my feet on each one, ( like cheating to do a split!) I am, or was a yoga instructor, and this helps me stretch out while prepping and helps me keep "some" of my flexibility. Dont mistake me, I am not in a real split, but its a good stretch for me now. The way I hobble about and feel now its hard to even remember how much better I was just a few years ago, and all the wonderful weight gain from the pred! I love that too. I wanted to tell wendy55 that I have been in a boot for over a year, I have stress fractures in my left foot, the top, and I think I got them from jazzercise. I loved it, and miss it so much! My bones will not heal, and after a year, still in the boot, I now use a bone stimulator at home to try and promote the bones to heal. My right foot is so bad now, I just had an MRI to see if there are any breaks there, ( my left foot did not show up in xray, and I continued to tell my doc something is wrong, so he eventually ordered the mri and it showed terrible inflammation in all of my tendons and the stress fractures.) the doctor is encouraging me to stop the boot on the left foot and wear it on the right foot to give it a break where its so painful. Imagine, I feel like I will never wear pretty shoes or boots again!
Tina,
thanks for the advice about cooking, I love to cook too, so I definately found out quickly it is much better to do it sitting down, and my slow cooker is my bff! I have 2,. and if I ever had a boost sometimes I will cook 2 meals in 1 day because dinner time is the witching hour for me every night.

Mary, called a friend who wore boot and she said it did not really help her. She quit wearing it because she was concerned about the constriction of her foot.

My rheumatologist thinks its still huge flare from RA.I was on enbrel for 1-1/2 years and i thought I was having remission, felt so good.So I like the control freak I am spaced my shots to 9-10 days vs. the 7 the dose called for. Started having itching problems all over. Hindsight-could have been sun reaction to enbrel it was in late spring or RA building back up. Rheumy took me off enbrel for 3-4 wks and then I (and I asked for it) took 2 25mg shots a week (not at one time). And then that's when everything started to fall apart. Enbrel quit working. RA came on super aggressive. Tried Cimzia in September for three months. So I have really been without good RA medicine since early June. Have been on prednisone here and there to keep pain down.

I think once I find a biologic, I will be able to control these flares. So that is why I am trying enbrel second time around. To give it a shot before I move on to whatever????

But right now my right foot is killing me. Pain on top of foot leading out from first three toes. Ankle pain too and why not, let's throw in the arch too. Wrapped 3" bandage around this morning and wearing athletic shoes. That compression seemed to help a lot. Icing it also helps a lot.

My rheumy upped my prednisone to 20mg. But (sign of old age) I don't know if I took it at lunch. I went in there to take it and then I thought, "Did I take it or not." So going to wait to be sure to take 20mg tomorrow. 58 years old-can't remember very well.

I have noticed a pattern among women who have RA. They were all very athletic and very much in control of their lives. I, too, exercised. Loved Zumba (that's how I hurt my foot the first time), aerobics, love, love walking outside, lifted weights. I miss it very much. Miss the Zumba. Especially when I see someone outside walking/running.

People say you should take yoga. My knees will not bend down to the floor. If the do, they hurt for days.I don't even get into tub. Take showers now.And I don't want to be the old lady in the chair in the class doing yoga. Last time I took Zumba, i fell and could not figure out how to get up. Seriously!

So, I know how you miss your yoga. I'm hoping that someday a medicine will kick in so I can at least do some of those thing again.

Do you have any tips for yoga if you can not bend down to floor or lay on floor because you can not get up? If it wasn't so sad, it would be funny! Bought a zumba dvd today. I thought I would try to do it at home at a slower pace (no knee raises). An advantage with doing zumba at home with dvd if I don't like their music I can listen to my own music in headphones. lol

Good Luck to you and our feet. Let us know if you find any solutions. My friend who has bad feet said she tried the Alegria shoes. I tried them but did not like. Might look at them again. Right now wear Nike Vomera and Merrells.