Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Foot fusion?????

This question is real close to the post that "Buggy" just made, but this isn't really about swelling, but more about the bones.

My right foot has been giving me grief for about 12 months now, but the last couple of weeks things have changed for the worse and I was wondering if anyone else had this, and if so, what the heck they do to wear shoes.

It looks like a bone on the top of my foot is fusing. There is a large, extremely tender lump over the top of my foot. There doesn't appear to be much swelling, but the lump is so large that I can't even wear my beloved Birkenstocks. It's very sore to touch, and more importantly, causes pain when I try to bend my foot. Also, the second and third toes (the second is worse) don't want to bend and are also very painful. So much so, I'm aware of the toes all the time.

When this problem first occured (Feb 04) it was so painful that I went to the local emergency department (not having a family doc at the time). The Doctor dismissed my AS stating that he had never heard of anyone having AS in their foot. He was of the belief that I had Gout, although no tests (including blood work) could confirm his diagnosis.

I don't know if this resurgence has anything to do with a rather bad fall I had shortly before Christmas, which put me out of commission for a while, although it seems that as the other pain is diminishing, this foot problem is getting worse. BTW, the fall was pretty bad. My landlord kindly installed a wheelchair ramp at my front door for my son, but for reasons unknown, decided to make it out of steel... well duh! this is Canada. I went to take my garbage out one evening, and the thing was covered in black ice (likely just ice, but they also decided to paint the thing black!). Anyhow, as I started down the ramp my feet went down at 90 mph and I landed flat on my back. Luckily for me, a neighbour was walking by, so he helped me back into the house and took my garbage for me.

Anyhow, can anyone tell me if they have AS in their feet? If so, how do you deal with it? Are there any exercises that would work? I'm supposed to be going out dancing on Saturday night (nope, not going to cancel, I haven't been out for months!) and if I have to buy new shoes, I will.

As always, I am real grateful for your replies. You guys know more than the medical community put together!

Max.

May the roof above us never fall in, and the many friends gathered below it never fall out.

Maxine,

I remember your post and thinking idiot Dr (that was the censored version) there is a peripheral form of this disease in it's own entitiy and it;s common to have axial and peripheral.....ladies and b27 negs are more prone to coexisting peripheral....and it can fuse.

I'm pretty lucky on the fusion stakes......but my feet were getting close ice/heat feledene gel pressure massage work to a point but anti-inflamamtories dmards are really the go, the icing takes a few days to work and if you have no other options it can help...

Metrexate has really helped my feet (steroids so as well) .....it's rare these days to get any discomfort like having a new pair...

Also check the outside of the ankle the tendon/ligament that runs down from the side of the shin behind the ankle boney lump and to the outside of the "metatarsal" of the little toe also a problem feels like you've twisted your ankle..that joint there can be involved and fuse....sametime as the top.......

i do find that I have to stretch alot, and lie back and draw alphabets in the air (Thanks Inanna) .....crack crack crack and try and squat a bit by bending the knees skier fasion it loosens the tendons a bit......but without the dmards steroids fraid it's a loosing battle nowadays......

Take Care it's not just the plantar pain,


David

Maxine, what an [####] making the ramp out of steel. What, did he think you put chains on the wheels of the chair and spikes on the soles of your shoes? Jeeze Loueeze.

As for your foot, get in touch with Cheryl. She does have fusing in her foot and that doctor is an idiot.

I do hope you get some help for it soon.

Many hugs,

Kat



"A life lived in fear is a life half lived." - Strictly Ballroom

Hi Max,

Why, oh why, can't doctor's just say "Hmmm, I've never heard of that happening, but I'm not an expert on that disease so I certainly can't discount that idea. Let's do some follow-up tests." But noooooooo....instead, the bad docs have to spout off as if they know what they are talking about and completely discount the patient. Well, that might have flown back in the days before this here Internet thingie, but not anymore. It is common these days for patients with lesser-know or rare diseases to use the power of the Net to eventually learn as much as (or more than) their diseases than their doctors know, so this automatic "pooh-poohing" of things they know nothing about needs to cease and desist.

OK, rant over, on to the more important topic.

My feet are extremely fused (and boy I'd love to show that doc!). All the toes on the left foot and a couple on the right are fused into a nice hammer toe shape, and my ankles have very little side-to-side or up-and-down movement left in them. Also, I can tell when I get a foot rub that most of the smaller bones seem to be fused or fusing too, as I used to get lots of cracks and pops when I was getting one, but not anymore. We're lucky if we get one crack out of both feet combined. Now, I don't pretend to know if all these bones meet the exact clinical definition of fusing, but I do know that most of the joints in my foot hardly move any more, so that sure sounds like fusing to me.

I don't have any magic theory, obviously, on how to prevent more fusion. I can only recommend that you move and stretch your foot as often as possible, doing it in the water if it hurts too much on land. I also echo the ideas the other folks in this post had, as heat and ice can always help.

Good luck,

Brad

Hey Max,

I'm B27-neg. my left foot-toes 2,3 and 4 have been very tender where they join the foot. This has been on and off for a few years. The movement is restricted but not "fused". Just before Christmas I got a sore throat and ignored it as is my usual custom. By New Years I couldn't swallow. I went to the walk in clinic on the 3rd, strep and bi-lateral ear infections. Ouch. I'm on antibiotics and Guaifen PSE (expectorant 1200mg/ sudafed120mg). The infection is doing great but after three weeks off of Enbrel those toe joints are huge and on fire. The top and bottom of the ball area are puffy and I'm living in loose booties. I saw the Rhuemy for the Enbrel study and he gave me a script for Dexamethasone and said since the fever was gone I could go back on the Enbrel. This is my second day of steroid and I had my injection last night. So far no change. He didn't say if this is peripheral involvement of the AS or if it is RA. In the past I tested neg. for RA. Go figure. BTW heat felt good but, later caused more discomfort. An ice pack was wonderful and seemed to help for an extended time.

You have plenty of company in the foot department. Never let them make you doubt yourself. They aren't walking in your shoes. Hang in there.

Kirst

I am 51 and fused top to bottom in the spine. my wrists are also fused. The podiatrist says every joint in my feet have a cyst or arthritis. My left toes are all rigid. I have plantar facitis in my heels .AS is an orphan disease and the Rheumies don't think it is as bad as RA. They thought woman did not get it until just recently.
Kev

Max,

I wouldn't cancel either.

If you had to I would buy some of those Isotoner slippers they have some colors that look like ballet shoes and would be soft on your feet.

I can't tell you about the bones, but I have had foot problems. I would get the lump checked out ASAP you might try heat or cold on it, which ever one felt better.

As far as your toes, you might need a shot of cortisone. I have had to do that several times just to walk. It hurts like crud but the relief is well worth it.

I can not believe they would make your ramp out of steel, it's like what is that about??

Kind of dangerous isn't it??

I'm glad you weren't hurt worse by that.

Hope you have a fun night,

Lisa

Hi Maxine,
I am sorry about your fall. That sounds awful. I did that once.
Anyway, on to your questions...Yes, I have a couple of fused toe joints, so I feel I am living proof that AS can strike just about anywhere. (I really wish doctors would become reeducated about this.) When it was happening, I felt like I had broken my toes and they hurt so badly. With the inflammation gone, they do not hurt anymore, but I imagine that the fusion may make me a bit less able to balance on hills. I don't know what to say about your bone on the top of your foot, but I can offer shoe advice. I recently bought some of those Ug boots. They are lined with wool and feel like slippers. Perhaps those would accomodate your foot problem. You can wear them around the house or out and about. When I got mine, I didn't take them off for 4 days. Well, maybe to sleep...Good luck.
abilena

Thanks everyone for sharing your experiences/assistance.

Oddly enough, I checked out below my ankle and yup, that is all swollen too.

I do have some good news. I have an appointment on Thursday to see about a Provincial Disability pension. As I'm already on a Federal one, this is just a financial interview. The telephone interview went well, and the woman says I will qualify. The good news about this, is that the Provincial pension comes with drug/dental benefits.... Yippee!!! For the last 6 years I've had no drug plan, and the cost of the meds have been huge... so this is going to help lots! Also, we have qualified for Para-Med for 3 hours a week. A lovely lady comes in and gives Daniel a bath, vacuums the stairs and cleans the bathroom (all of which I've been having a hard time with)

Anyhow, I'm going to wait until the end of the month (when the new pension should kick in I hope) and then go see the Doc. This way, when he prescribes something I won't have to decide between food or meds before filling the script!

I'm going to ask him about some cortisone shots. I have to do something as this gimpy walking (because of the foot) is causing all sorts of problems with my spine.... specifically my neck. And of course.... with the neck so inflammed I'm getting doozy headaches! Jeez, I feel like an old woman! I think the worst part is how when one part of our body goes gimpy... then the rest becomes affected.

Thanks again for your help guys! I'm going to the Docs with a lot more ammo now!

Maxine

May the roof above us never fall in, and the many friends gathered below it never fall out.

Hi Maxine,

I have AS in my feet and often can't put a lot of weight on the ball of my foot. My PT couldn't believe how stiff my feet are. He recomended I roll a tennis ball or frozen water bottle under my foot to help move the joints. Also, running shops sell insoles called powersteps and superfeet. I've used both of these and they seem to help a lot.

Jeff