[Schumacher]

Hello,

I am hoping some of you might have some insight for me. The tops of my feet off to the side have been swelling up like eggs. Mostly on my left foot. At times, it is really large and the pain of my PN is way up. At other times the 'humps' are smaller when my PN pain is less. It feels like some bones are broken below the two smallest toes. I asked my doctor (neurologist) and she told me that I could not have broken bones. It was the PN doing it's damage.

Today I saw my Endocrinologist (it was time for thyroid check) - I asked her and she said that the PN often causes the bones to loosen and move or dislodge a little causing this swelling deformity and pain. She told me it was impossible to do anything about it.
My legs in general have been hurting more, but I figured it was due to recovering from knee surgery (after falling).

The pain in my feet seems to be changing and this odd swelling on top creates almost a cup area from it up to the toes. If I try to bend my toes down real hard to correct it, it feels good. My husband will rub them and push up from the bottom correcting the indention and it helps too. I first thought I was having swollen lymph nodes of the feet! I know this must all sound crazy, but it is causing some true suffering.

Without rambling on, does this sound familiar to anyone here? My husband suggested going to an orthopedic doctor. Something is definitely more going on with these feet.

ML Schumacher

[mrsD]

first. I think these doctors are good for everyday foot issues. (not complex surgeries, etc).

In order for bones to come "loose" your tendons have to change OR your
bone density has to shrink alot. When cartilage in between bones shrinks
the space between them grows and you can dislocate them. This can happen with the knee.)

Is there RED inflammation with these swellings? If there is any HEAT or redness I'd be very concerned. What is the time frame between these and your knee surgery? The fact that they change in size may mean you have blood clots down there! So infection, blood clots, these two things are serious IMO.

In any event either go to an Ortho MD or the podiatrist. I think your endo explanation is strange and not helpful!

If it were I, I'd be at the new doctor NOW.

[dahlek]

As I agree and have experienced such 'episodes' myself.

If your thyroid #'s are normal [thyroid can do some very 'fun' things in terms of swelling of the feet, etc. when off] then DO see an orthopedic or podiatrist to watch your feet and occasionally 'wrap' them for support as needed.

Take a look at the following web site. It explains somewhat how your malfunctioning nerves aren't telling your lymph system how to work properly and that can result in swelling. For me, it's the ANKLES! They can 'puff up' if I look at them wrong! Gentle light massage of the skin/muscles all the way UP to half-way up your calves can help work out any excess fluids sometimes. I've had this done at PTherapy and do it myself now when I really need it - it works! And yes! Your shoe size can change dramatically during these 'episodes'!
http://telemedicine.org/stamford.htm

I hope this helps and let us all know what happens! - j

[Silverlady]

I totally agree with Mrs. D and Dahlek,
I wear custom fitted orthotics in my shoes now to support the bones. They started collapsing which caused major stretch on the ligaments and tendons and nerves. This caused swelling and lots of pain. The orthotics seem to be correcting this problem. The only issue I've had with them is finding shoes that will hold the orthotics. The only brand I've found besides the usual athletic shoes, is Naot. Pricey but seem to work well.

Billye

[HeyJoe]

In the excellant link that Dahlek gave you click on diabetes in skin disease and almost at the bottom is a picture of a foot that has a hump. Take a look and see if it looks like yours, the caption is Charcot Foot.

[Kitt]

Here is a site on charcot foot. http://www.epodiatry.com/charcot-foot.htm

You can go thru your search engine for pictures and many will come up.

I agree with mrsd and dahlek. Good site.

[Cheryl]

Hello - I have had lumps on my feet before. My podiatrist ordered xrays and it was a tendon that had ruptured. From what I can understand, they can just let go and curl up. He said he could do surgery but it wasn't necessary unless I was in pain from this. It does not bother me and the lump is actually gone now. I think it jumped over to the other foot for awhile. I think to some extent, this is part of the disease. My feet do not look like they use to and buying shoes that fit, are comfortable and that will actually stay on my feet is a challenge.

Good luck.

Cheryl

[Schumacher]

I wanted to reply sooner. I had two awful days of pain. I just go hide. I know I pushed myself beyond limits on the week-end helping my son move, and it was time to pay.

Mrs D - you made me think (not the easiest thing) - I did have a bone density test back in October. It was one of those neighborhood screenings so they did my heel. The report said I was HIGH RISK OF BONE DIMINISHMENT. I had a heel BMD T-Score of -1.5
(t-score of any number equal to or below -1.0, consider other risk factors)
What they mean by 'other risk factors' I have no clue.

I showed my GYN the report and he put me on Fosomax 75mg. You take one pill a week.

Well, several weeks later, I was at a friends birthday lunch. The friend sitting next to me told me horror stories about Fosomax causing jaw bones to disintegrate. There was another woman at the lunch who had taken it and her jaw bone was so damaged that her dentist would not work on her teeth. I thought this was 'God's intervention'! I quit the Fosomax. I have a history of trouble with Rx's anyway.

The physical therapist for my knee told me that 'weight bearing' exercises, Vitamin D, Calcium, would do as good for building up bones. So, I determined to do weight training on upper body and increase cardio workouts.

Silverlady and Cheryl - the stretched ligaments and tendons and/or ruptured tendon makes sense if my bone density is so bad in my feet. It does feel as if by bones are collapsing.

dahlek - I do think my thyroid has much to do with all that is going wrong with me. While down and out the past few days, I read the thread by cyclelops 'Perserverance and coping' - it was the best medicine! Your comment "that seemingly unrelated conditions DO and are connected somehow" really touched me (along with the whole thread!) - I have always thought that exact thing! It was like you were speaking for me.

HeyJoe - I took a look at Charcot foot, and it does not look like mine. The lump is on top. And, Mrs. D., there is no redness or heat - just a lump on top that hurts like heck and toes feeling crushed. (like the bones are falling apart).

I am at a loss on Podiatrists. I know one Orthopedic Foot Dr. in Dallas I could see. If someone knows how to find a GOOD Podiatrist please let me know. All I have heard is about bad ones. I will try to get an appt. set with someone tomorrow for asap.

The replies to me were uplifting at a very needy moment. I want you to know they helped me 'pick myself up' and gave me a 'good direction' to go.
When your neurologist and endro just blow you off when you are trying to tell them 'something is happening here!!' - well, you know.

Thank you for turning on a light and warming me with the encouragement.

ML Schumacher

[mrsD]

some people (like me) are born with excess fluid that covers the tendon sheath.

I found out about mine, when I had a hemangioma tumor removed from my left foot. It used to bleed, and was a mess...and was deep and it was painful to have done. (back in the old days before lasers).

Anyway this fluid shifts, moves, and can be irritated if you tie your shoes
too tightly. I have a very high instep which makes this worse.

The fact that your swellings change in size does not seem to me to be Charcot foot, which is more static, resulting from broken bones not felt.

As I have aged I have to be VERY careful of tie shoes, and slip ons cannot hit those tendons. If they get compressed or bumped they make my toes numb.
I cannot even get into most boots because my foot is so high. You also have to watch for broken sesamoids...which are in the ball of the foot. I have had two cortisone shots there over the years. When these bones shift slip around, you can get swelling and alot of pain.

It is really important to get a screening from a good podiatrist (some are not good).
Since your bone density is poor, I'd also get a blood test for Vit D. If you are low, calcium will not be absorbed well without D. Also low magnesium and low B12 negatively impact bone density. And new research also implicates low vitamin K for osteoporosis and poor protein. One problem with Fosamax and other bisphosphonates is
that it makes bones a bit denser but MORE BRITTLE and they don't heal well if they break. I think we will see less emphasis on Fosamax for this reason.

So there are many nutritional things you can do besides Fosamax.

One thing that really helps my feet when I have pain is Salonpas patches.
These are over the counter and good for inflammation pain (I also have arthritis).

Feet are very complex, and get alot of abuse and wear and tear. Many things can happen individually with them, and I think people should always consider multiple causes of foot pain. Just because you have some neuropathy does not mean you don't have other things happening too.

[Schumacher]

Mrs D, I have an appointment with a good podiatrist on the 17th recommended by a friend. I see my regular md this week and am requesting tests for my Vit D, Calcium and Magnesium, and B12.
Waiting until the 17th for the foot doctor is going to be the difficult part.
I'll keep everyone posted. This was really helpful. Thanks.

ML

Originally Posted by mrsd

some people (like me) are born with excess fluid that covers the tendon sheath.

I found out about mine, when I had a hemangioma tumor removed from my left foot. It used to bleed, and was a mess...and was deep and it was painful to have done. (back in the old days before lasers).

Anyway this fluid shifts, moves, and can be irritated if you tie your shoes
too tightly. I have a very high instep which makes this worse.

The fact that your swellings change in size does not seem to me to be Charcot foot, which is more static, resulting from broken bones not felt.

As I have aged I have to be VERY careful of tie shoes, and slip ons cannot hit those tendons. If they get compressed or bumped they make my toes numb.
I cannot even get into most boots because my foot is so high. You also have to watch for broken sesamoids...which are in the ball of the foot. I have had two cortisone shots there over the years. When these bones shift slip around, you can get swelling and alot of pain.

It is really important to get a screening from a good podiatrist (some are not good).
Since your bone density is poor, I'd also get a blood test for Vit D. If you are low, calcium will not be absorbed well without D. Also low magnesium and low B12 negatively impact bone density. And new research also implicates low vitamin K for osteoporosis and poor protein. One problem with Fosamax and other bisphosphonates is
that it makes bones a bit denser but MORE BRITTLE and they don't heal well if they break. I think we will see less emphasis on Fosamax for this reason.

So there are many nutritional things you can do besides Fosamax.

One thing that really helps my feet when I have pain is Salonpas patches.
These are over the counter and good for inflammation pain (I also have arthritis).

Feet are very complex, and get alot of abuse and wear and tear. Many things can happen individually with them, and I think people should always consider multiple causes of foot pain. Just because you have some neuropathy does not mean you don't have other things happening too.