Pain walking and swelling around balls of feet ?

[kristina]

Hallo,
For quite a few weeks I have been suffering from fluctuating pain in and around the balls of my feet. Sometimes I can hardly walk, other times it improves a little as I am walking but it never goes away completely. If I stand still it gets worse and when I move away the pain is there again. The balls of both feet appear swollen and if I press with my finger on the underside it gives me pain as in certain places.  My dry weight on dialysis is very reasonable and I can’t take too much more fluid off without cramping. My feet and ankles appear as though there is some water-retention but I don’t know how far I can go to take more water off. I have consulted the medics and currently I am waiting for the result of x-rays of both feet. I don’t know whether this is a feature of dialysis, so I would like to know of anyone on dialysis has experienced this.
I have changed to different shoes six times but it doesn’t make any difference, nor does resting my legs/feet horizontally help. It has been muted that it might be arthritis or some inflammation of a nerve or tendon, and I am wondering whether the water-retention either causes it or makes it worse? I have also wondered whether it is a Lupus/MCTD-flare-up?
It is a great problem for me as it causes me great mobility-problems and I don’t really need this now.
Thank you from Kristina.

[Charlie B53]

How much 'arch' do you have to the bottom of your feet?

Shoes are critical to foot comfort.  Manufactures make shoes more or less 'generic' and the lack of proper arch support can and does cause problems for many people.

You may have to experiment using some of the different insole inserts available.

I had excruciating foot pain that was finally overcome wearing custom molded inserts that had been 'form fitted' to my arches.   I was very skeptical that they would make any difference.  I was pleasantly surprised that they do!

[kickingandscreaming]

I don't know if this has anything to do with what you're experiencing, but this is what happened to me.  In recent years, from wearing shoes that weren't roomy enough in the toe bed, I activated something called a Morton's Neuroma.  Very pain.  It's like walking on a stone at the base of the toes and the ball of the foot.  Quite crippling.  I went on a search for wider shoes that allowed my toes to not be squeezed together at all.  I found that Crocs were the shoes for me in their "Room Fit" size (http://www.crocs.com/crocs-fit-guide/fit-guide-landing.html).  At the time they had a special shoe called an RX Cloud or something like that.  I can't seem to get that anymore.  But it did the trick and relieve the scrunching of my toe area and that foot is fine now.  Recently I had a period of bad swelling in my legs and feet and the right foot was especially swollen.  That swelling activated a Neuroma on the right foot that I didn't know I had--until my swollen feet were squooshed .  Good luck.  I know how painful and limiting this can be.

[hatedialysis2]

Hi Kristina:
 I have no idea what can be causing your swelling around the balls of the feet.  Hopefully the x-rays will reveal the cause.   swelling does sound like there could be some sort of inflammation.  Not sure if you saw this site and if it has any helpful information to you?  Its lists medical conditions that can  be the culprit:   

"Bunion - this is a painful swollen bump that occurs at the base of the big toe. It weakens the big toe, which results in increased stress on the ball of the foot. This condition can be caused by wearing shoes that are too small, or can be inherited. It is more common in women than men.
Rheumatoid Arthritis - swelled joints in the foot, or gout can cause Metatarsalgia.
Build up of fluid in the foot.
Morton's neuroma - this is a growth of fibrous tissue of one of the nerves between the metatarsal heads. Morton's neuroma has very similar symptoms to Metatarsalgia and can cause further stress to the metatarsals.
Diabetes - the small nerves in the foot can become irritated, thus causing Metatarsalgia."

source:     http://www.medicalnewstoday.com/articles/190431.php

[Jean]

And then there is this odd ball one. I began to feel a lot of pain in my right heel, a little red, off and on swelling. Ended up going to Urgent Care, and that Dr. had no idea, just wanted to reduce the swelling, went to see kidney dietician a few weeks later and guess what it is???Gout!!! 2 days of Allopurinol and all is well. Good luck to you Kristina, you are just as I am, always coming up with the possibly most wierd things!!

[Charlie B53]

Gout is NO fun.   Neither is Psuedo gout.  Uric acid crystals or calcium crystals, same painfulness.

Surprisingly, prednisone made the greater improvement, and I am still taking 5 MG daily.   My joints haven't been this well in a very long time.  But I am gaining back too much of the weight I was so happy to have lost.

I will see the Pain Dr next week.  Hopefully he will agree to increase the pain med and cut out the prednisone.  Hopefully I will stop eating so much and begin to lose this 30 pounds I put back on.

I will keep the bottle of Prednisone in case of a flare up.

Hope you fine something that works for you and get this under control quickly.

[Xplantdad]

What blood pressure meds are you on...or have you changed your blood pressure meds lately? Our daughter had this same sort of thing going on and it took the docs at Mayo Scottsdale to figure out it was medication induced lupus. Once we changed her blood pressure meds...it went away, albeit slowly.

[Fabkiwi06]

Hope you're able to figure it out! Until you get some answers, sounds like a great excuse to get some foot massages and long, soaky pedicures 

[kristina]

Hallo again and many thanks for all your kind advice and thoughts, it is very much appreciated and very inspiring.
When I read Charlie’s thoughts about arch-support and insole-inserts, I suddenly remembered that many years ago, after “my” ankle-fracture which necessitated many operations over many years, I received from the orthopaedics special inlays for my shoes to have a chance and eventually get the foot balance better again. When my foot balance was getting much better, I could store these shoe-inlays safely in my collection-box of all my “in-case-of-later-medical-need-bits-and-pieces”.
Yesterday I remembered and found them again and put them into my shoes to try them out and I have to try it out again with my particular problem now and hope for the best. It appears I have also water-gathering in my feet and I find it difficult to get this off and I am still wondering if this plays some part in the pain I am experiencing when I walk.
Many thanks again for your kind support and these wonderful inspirations from Kristina.

[Charlie B53]

I split the weight bearing ball of the left ankle in 74.   Dr's want to;
A  Fuse the joint solid
B  Replace the joint
C  Amputate

I chose

D  None of the above

It still gets me around so I will keep it.

Pain is a given.  It lets you know you are still alive.

Anything you can use to help make it more manageable is good.   Good shoes, well fitting inserts.   Weight control (this is the tough one!).

[Jean]

Kristina, let us know if this is your solution.

[Charlie B53]

I hope those inserts work for her.

I've had problems re-occur so many years apart that I have forgotten the prior event and pert near had to repeat all the futile attempts to find a solution, only to eventually realize the 'cure' was within my reach all along.

I call those some of my D'oh Moments.    I am sure some people can relate to that.   Many won't admit it.   Life happens.

Hopefully Kristina will know very shortly and soon be back to her usual self again.

Pain can make the nicest people cranky, and we are not usually like that, just under severe stress that would totally crush most 'normal' people.

[kristina]

Many thanks again for sharing with me your ideas and kind thoughts; I do appreciate it very much.
My feet were so swollen and hurtful, that I had much more fluid taken off and surprisingly there were no cramps at all and after dialysis my feet were not swollen that much any longer and the pain has almost subsided. In order to get off the increased amount of fluid, they dropped the pump-speed. That might not be desirable long term, because it does not clean the blood so well on a lower pump-speed, so I have to watch my next blood-results.
I think what happened is that my output has receded slowly over a long period of time and I did not reduce my input, nor did I increase the fluid to be taken off and so, over a long period of time fluid was slowly building up, especially in my feet.  For the next two weeks I shall have much more fluid taken off and then my dry-weight will have to be reset as well. It seems to be a never-ending learning-process ...
Many thanks again from Kristina.

[kristina]

Hello again,
with regard to my walking difficulties, due to the pain around the sole of my feet I just wanted to run another idea past you to get your thoughts. I have gradually taken off more and more water hoping that this would alleviate the symptoms because naturally water gathers in the feet, but this has had unfortunately no effect whatsoever in the long term. At first it looked as if my problem was due to water-gathering in the feet, but then, unfortunately, the pain continued all the same. I am now wondering what could be the cause and I came across “AMLOIDOSIS”. This is a problem that occurs sometimes in dialysis patients, usually after about five years where proteins in the blood are deposited on joints and tendons, causing pain, stiffness and fluid in the joints. A renal physician said this may be a possibility but they are looking into other “things” first. So my question is, has anyone been diagnosed with “AMLOIDOSIS” and how did this affect them and what treatment were they given and did it alleviate the symptoms?
Many thanks again from Kristina.

[SutureSelf]

Hello again,
with regard to my walking difficulties, due to the pain around the sole of my feet I just wanted to run another idea past you to get your thoughts. I have gradually taken off more and more water hoping that this would alleviate the symptoms because naturally water gathers in the feet, but this has had unfortunately no effect whatsoever in the long term. At first it looked as if my problem was due to water-gathering in the feet, but then, unfortunately, the pain continued all the same. I am now wondering what could be the cause and I came across “AMLOIDOSIS”. This is a problem that occurs sometimes in dialysis patients, usually after about five years where proteins in the blood are deposited on joints and tendons, causing pain, stiffness and fluid in the joints. A renal physician said this may be a possibility but they are looking into other “things” first. So my question is, has anyone been diagnosed with “AMLOIDOSIS” and how did this affect them and what treatment were they given and did it alleviate the symptoms?
Many thanks again from Kristina.

Yes, amyloid deposits are usually a complication of long term dialysis caused by the inefficient clearance over time of beta 2 microglobulin from the blood during treatment.  B2M, which causes the development of dialysis related amyloids, is a hard to clear solute.  The best conventional treatment to slow the progression is making sure a high efficiency dialyzer/filter is being used and treatment run times of at least 5 hours.  Just turning up blood pump speed isn't adequate.

From Home Dialysis Central:

Prevention And Treatment Of DRA (dialysis related amyloidosis)

It's best not to get DRA. How can you avoid it? The causes give you some clues. While none of us can avoid aging, you can:

Ask your doctor about antioxidants that would be safe for you.

Avoid inflammation. If you have a catheter for HD access, a fistula would reduce your risk.  (My emphasis) Ultrapure HD fluid—which has fewer germs—reduces blood levels of B2M , perhaps because it causes less inflammation.

If you do HD with reuse, make sure Renalin is not used.

Keep your blood sugar in control if you have diabetes. Side effects are more likely if your sugars run high.

On a PD cycler, see if you can use icodextrin for the night-time exchange.  (Regular PD fluid has a higher level of AGEs. Sugar in the fluid browns, or caramelizes, during manufacturing.)

If you do HD, get as much treatment as you can. (My emphasis)  High-flux dialyzers remove more B2M than low-flux ones.  This is one reason why fewer people on HD have amyloid today than in the past. Short daily HD six times per week removed 56% more AGEs than standard HD.  Six nightly HD treatments removed 4.6 times more B2M than standard HD.

FULL ARTICLE - http://homedialysis.org/life-at-home/articles/dialysis-related-amyloidosis

A medical device, the Lixelle Column, which is attached to the dialysis set up during treatment, greatly helps in the removal of B2M.  It has been in use in Japan for quite awhile and finally got FDA approval for use in the US last year, although still not widely available because of cost and our system of bundled reimbursement for dialysis treatment.  Probably not available at all in the UK.

http://www.fda.gov/MedicalDevices/ProductsandMedicalProcedures/DeviceApprovalsandClearances/Recently-ApprovedDevices/ucm439036.htm

http://ihatedialysis.com/forum/index.php?topic=31943.msg491771#msg491771


Also, hemodiafiltration, as opposed to hemodialysis, has shown to be effective in the removal of B2M.  Again, like the Lixelle Column, availability is a major drawback. -

https://www.researchgate.net/publication/6752060_The_effectiveness_of_on-line_hemodiafiltration_on_beta-2_microglobulin_clearance_in_end_stage_renal_disease


A successful kidney transplant stops the progression of amyloidosis as well.


I started showing symptoms of amyloid build up about 1.5 years ago after 23+ years of dialysis.  It started with carpal tunnel syndrome in my wrists, progressing to neuropathy in my hands and loss of mobility in my neck.  So far no other joints affected.  My course of treatment is to run 6 hours on a high flux dialyzer and now trying to get approval and funding to use the Lixelle Column.  I'm also awaiting a second transplant.

EDIT: Since also having SLE, maybe you should schedule a consult with your rheumatologist to see if what you're experiencing is a manifestation of this disease. 

[kristina]

Hello SutureSelf,
Thank you very much indeed for such a detailed and comprehensive reply. I am sure this will be very interesting not only to myself but to many others.
It is so kind of you to go to so much trouble and it is very much appreciated. I shall have in the back of my mind everything you have mentioned as I go forward to find out the cause of my medical problems. Even if Amloidosis is not the cause, the information you have so kindly given will nevertheless be there to assist me or anyone else if any symptoms suggest this might be a possibility.         
Thank you once again for your clear and precise reply
and I send you my kind regards from Kristina. 

[MooseMom]

SutureSelf (I like that moniker, and I STILL like your photo  ), thank you for your explanation of your course of treatment.  Does it alleviate the effects of amyloidosis (and if so, by how much?), or does it merely keep the condition from getting worse/spreading to other joints?

What are you having to do to get approval and funding for the Lixelle column?

[dialysisuser82]

         On dialysis over 34 yrs.  This is a personal experience: I remember for many years my BP kept stabilized for a few months then suddenly it would go out of control, e.g. 210/180. The Neph. would

give me different combination of BP medications on trial and error with unusual side effects. 

     Your case reminds me some of those combinations that caused my legs swollen with so much pain I could not walk.  I had figured out after a weeks that the only new factor were those med.  Don't

ask what they are since I did not pay much attention and it has been so long.  Good news, we finally found a right combination. 

     However...  HAIR...

Again I went on a combo of Corgard and Minipress which were safe as I had zero side effect.  But every few months I had to go off with a different combo, i.e. Minoxidil just for 4 weeks that was all I

could tolerate.  Minoxidil was new at that time.  I had never seen so much of HAIRS!  Hairs on my head, in arms, oh yes, a little mustache and beard to complete the picture.

   Anyway just a quick reminder what medications did to me personally.


 


   

[SutureSelf]

SutureSelf (I like that moniker, and I STILL like your photo  ), thank you for your explanation of your course of treatment.  Does it alleviate the effects of amyloidosis (and if so, by how much?), or does it merely keep the condition from getting worse/spreading to other joints?

What are you having to do to get approval and funding for the Lixelle column?

Running longer hasn't alleviated the effects - meds and PT help with that.  Running longer has probably kept me from developing amyloids in other areas of my body.  My neph had to get the process rolling to get funding for the Lixelle.  She was already willing to prescribe.  Basically, I believe it comes down to whether or not I financially and medically qualify based on the manufacturer's protocols.  Kind of like the drug commercials you see on TV, "if you can't afford this medication, maybe so and so drug company can help provide funding..."

[kristina]

         On dialysis over 34 yrs.  This is a personal experience: I remember for many years my BP kept stabilized for a few months then suddenly it would go out of control, e.g. 210/180. The Neph. would

give me different combination of BP medications on trial and error with unusual side effects. 

     Your case reminds me some of those combinations that caused my legs swollen with so much pain I could not walk.  I had figured out after a weeks that the only new factor were those med.  Don't

ask what they are since I did not pay much attention and it has been so long.  Good news, we finally found a right combination. 

     However...  HAIR...

Again I went on a combo of Corgard and Minipress which were safe as I had zero side effect.  But every few months I had to go off with a different combo, i.e. Minoxidil just for 4 weeks that was all I

could tolerate.  Minoxidil was new at that time.  I had never seen so much of HAIRS!  Hairs on my head, in arms, oh yes, a little mustache and beard to complete the picture.

   Anyway just a quick reminder what medications did to me personally.


 


 

Many thanks for your kind thoughts Dialysisuser82,
I shall ask the doctors whether or not "my" walking difficulties may be connected to my current medication
and I thank you again for your kind thoughts,
Kristina.