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Avatar universal

Chronic foot pain, NOT neuropathy.

Hello! I have a post in "Undiagnosed Symptoms" but I thought this night be a more appropriate community for me. I am a 29 year old female and I have been experiencing chronic pain for the past two years. The pain is widespread throughout my body, but it is concentrated in the bottoms of both of my feet. So far after tons of tests, procedures, bloodwork, imaging, and specialists, my only diagnosis is a derivative of Fibromyalgia called Central Sensitivity (or Sensitization) Syndrome. The Mayo Clinic Neurologist described it as a more concentrated form of Fibro. I don't show all of the signs of Fibro like the trigger points, so it was initially written off.

I also don't have Peripheral Neuropathy, as there is no damage to any of my major or fine nerves. (Extensive testing including Nerve Conduction Studies, ENGs, and Tilt Table Tests ruled that out.)

Is there anyone out there that has this foot pain that is not associated with diabetes or neuropathy?

Any questions you'd like to know that might help you to understand my situation and I'll gladly answer them.
20 Responses
547368 tn?1440545385
Hello,

I don't have your symptoms (SX) or diagnosis (DX). I'm sorry you have chronic pain - but am glad that you have a DX.

I also want to welcome you to our forum. We have multiple members with various pain producing SX - some are most always monitoring this site and others check in from time to time. I'm hopeful that others can share their similar situations with you.

We can offer you support and understand in this beast called Chronic Pain. I look forward to hearing more from you.

Welcome,
~Tuck

Avatar universal
Thank you Tuck, I greatly appreciate that :)
Avatar universal
Hi  :)

First let me join Tuck in welcoming you to our Forum!  :)   I don't have what your suffering from either, but my late husband died from Diabetes and even though you don't suffer from that disease the type of pain your having in your feet sounds like the type he suffered from but for a different reason.  After watching him suffer from the terrible foot pain, I can certainly sympathize with you over the horrific, never ending pain.

My heart goes out to you even more so because you are so terribly young and are saddled with this never ending pain.  I hope that your Doctor can find the answers that you so desperately are searching for AND deserve!  :)  

Have the Doctors been able to give you ANYTHING that gives you any relief at all?  I hope they will be able to help you and soon.

I suffer from Osteoarthritis and because of this I have foot pain.  Now mines from arthritis in my hips that send the pain down my legs to my toes.  I'm NOT suggesting that you have arthritis BUT my Doctors have given me a prescription for special shoes AND inserts that are molded to specifically fit my feet and.take the pressure off the balls of my feet.  I can't emphasize enough to you the difference in the way my feet feel when I walk and when I'm just sitting and relaxing as the p resource is off of them.  You might ask your Doctor's if they think this might help you.  Just trying to come up with anything that might help you alleviate some of the searing pain you are feeling.

My thoughts are with you and I, too, hope you will keep us updated on how you are doing.  

Looking forward to hearing from you often and hopefully you will have something that will help with your pain, not just your foot pain but all the pain your experiencing over your body.

Best wishes........Sherry  :)
Avatar universal
OOPS! I see that "spell check" took over part of my answer. LOL!  

The word "p resource" is SUPPOSED to be "pressure".  Now maybe it will make more sense to you (and me).  LOL!

Again, I wish you the best.....Sherry. :)
Avatar universal
NamNam thank you for your kind words! I have seen a Rheumatologist at the Mayo Clinic down here in Florida, and he seemed to be of the opinion that I absolutely could not possibly have arthritis at my age. I don't believe that to be true, but that doesn't necessarily mean that I have it... Just that my age doesn't determine whether I could or not. I will be seeking a second opinion.

As for the diabetic neuropathy, I have done numerous tests for diabetes and for neuropathy separately. If anything is clear, it is that I do not have blood sugar problems, not do I have nerve damage anywhere, including my feet. They tested both the major nerves and the fine nerves in my legs and arms.

It's interesting that you mention your condition because my neurologist once spoke of how problems in your spine can account for pain in your feet. He ordered a ton of spinal MRIs, and he did find some narrowing in my spinal canal as well as a bulging disc in my lumbar. He told me that it wasn't significant enough though to explain the type of pain I'm experiencing. Also, I don't experience the shooting sensation down my legs that you described, and the pain is perfectly even on both sides.

My Podiatrist told me to buy some Asics and some orthopedic inserts, and so far I have not noticed and change in my pain. Could you tell me the name of the shoes you were told to buy that helped so much?

I've recently read about a couple of conditions that I will be doing more research on... CRPS Complex Regional Pain Syndrome (or RSD Reflex Sympathetic Dystrophy), TAH Tactile Allodynia Hyperalgesia, and POTS Postural Orthostatic Tachycardia Symdrome.

Thank you again for your insight!
Avatar universal
Hi and welcome. This is a great forum to be a part of.  I don't have anything to add to help you figure out the pain. I'm just offering you support and understanding. Having chronic pain is very frustrating.  
Karen
547368 tn?1440545385
I know you didn't address your latest comments to me - but wanted to respond anyway.

CRPS is DX in part through the nerve conductive tests that you have already had - and is usually more concentrated in one location. I think Mayo would have caught that - at least I would hope so.

POTS comes with cardiac type of symptoms(SX), usually including syncope (fainting). If you have those SX it should be considered.

I don't know enough about TAH to comment - other than to say I thought it was often considered a part of Chronic Pain Syndrome.

Follow any thing you believe might be a better DX. I admire your fortitude. You are your own best advocated. Be assertive and don't give up till you're satisfied with your DX  - no matter what that may be.

I'm delighted that you continue to post and share your thoughts with us.

~Tuck
Avatar universal
I'm glad that you are going to get a 2nd opinion.  I was 1st diagnosed with my Osteoarthritis at the age of 28 and it was so bad that I needed a hip implant then bit.because they weren't as well perfectkied then (1974) they asked me to wait as long as I could.  I lasted until I was 35 and  couldn't walk or work before I did it. When they got in to replace the left hip there was nothing there.  The entire hip joint had disintegrated, nothing was there.  Made a world of difference once I got the new hip in. :)   The whole point is to let you know that you are correct in not believing that you are to young.  My Doctor figured I'd had my arthritis since I was a teenager.

Again I'm glad you're not stopping with just that 1 opinion.  You're very wise to get a 2nd opinion.

The type of shoes i.have are the type they recommend for diabetics.  You have to have a prescription to get them.  The same for the type of inserts I have. These are molded to your individual feet and will relieve specific pressure points on your feet that your generic over the counter inserts.won't do.  Your Doctor will tell you where you need to go to buy these shoes and inserts.  You can just try the inserts for your feet also, and put them in tennis shoes or running shoes or whichever shoes your most comfortable in.  They are expensive but well worth it.  :)  The best thing you can do with foot pain is to wear shoes that will support your feet.  It will also help your back.  I feel for you as I know how bad it was at your age to have pain.  You're so very young!!!  

We're all here for you and will help in any way we can.

Thinking of you.......Sherry :)
Avatar universal
Want to apologize for all the typos but answering this on my cell phone.  :)

Want to clarify that I, too, doubt that you have arthritis but it's ALWAYS best to get a 2nd opinion whenever you're not satisified.  It's your right to have 1 to be sure you've got the correct diagnosis.  :) .......Sherry :)
Avatar universal
All incredibly helpful and encouraging responses, including from those who don't share my symptoms. I definitely need the encouragement right now as I am returning to my full time job at the end of this week, after three months of being off. I'm nowhere near ready to go back, but I can't afford to be broke anymore.

I thank you Tuck for the info on those syndromes... You're so very knowledgeable! What is your experience with Chronic Pain Syndrome? Also don't hold back from piping in on any topic if you want! That's why I'm here!

NamNam, I can't believe you were so young! Did you have to live on disability? I'm considering the option of applying for permanent disability, but then I wouldnt legally ever have the option of working even if I could find something that accommodated my problems, right? And don't apologize for the typos, I'm just as bad!
547368 tn?1440545385
Oh dear!!! You have to return to a full time job? I hope it isn't physically demanding.

If you are young - and when I say young I mean under 50 - it's very difficult to be approved for SSD (Social Security Disability). It's a long complicated process that requires lots of proper documentation through physician's notes and medical records. The older you are the more likely you are to be approved - again with proper documentation. The younger you are the more likely the process will take years and require an SSD attorney. Some conditions are now on what the government calls the "Fast Track."  It boils down to fitting in their parameters for a quicker approval. I know ppl that were approved in four months, give or take a few weeks - I'm one of them. Sadly I'm one that would give about anything to be able to return to my career(s).

Yes you may work and collect SSD - however there's a dollar amount ceiling. It's a bit complicated but by the time you go through all the paperwork, etc you will understand the fine print.

In short, Chronic Pain Syndrome is the combination of Chronic Pain and the secondary complications that are making the original pain worse. As you know Chronic Pain is DX as pain that has persisted for 6 months or more. Some physicians say 3 months. Cancer pain can even be considered chronic pain. It makes no sense to me. If you have a condition that continues to produce pain, it's pain. I don't agree with the labeling of most ppl with Chronic Pain Syndrome - but I admit I'm strange. :o)

~Tuck
Avatar universal
I didn't go on disability until I was 57.  It was by chance that I did.  I was without insurance and was just seeing what was available and called.  They returned my call and to my great surprise Osteoarthritis, if severe enough, qualifies you for SSD.  I had always been under the mistaken idea that you had to be permanently in a wheel chair or paraplegic or dying to get on it.  My late husband had been on it because of his blindness but not because of his diabetes which is why I thought it had to be a devastating disability.  I was granted my disability in less than 6 mo. time, the 1st time I applied. Which is unusual.  It can take a very long time and a lot of time it takes having to hire a lawyer and taking it to an appeals court to get approved.  Some have to go thru it many times.

As Tuck said, it's almost impossible to get approved when you are so young.  As she said it's next to impossible before you're at least 50 usually a little older and you still have to jump through hoops to get it.

Avatar universal
Meant to add that, as Tuck said, you can still work.  You can earn a set amount (don't know how much it is now) before they start to reduce you SSD payments.  It's something you would have to look into.  If you're serious about this then Google Social Security Disability and go from there.  :)

Feel lso sorry for you having to deal with this at such a young age.  

My heart goes.out to you.......Sherry :)
Avatar universal
Thanks guys. I am indeed returning to a full time job. I'm not necessarily planning to stay at this one much longer, but I am still clinging to the hope that my condition is treatable, whatever it is. I keep going back and forth between agreeing completely with my doctors and wanting to just scrap it all and start over. I'm at a huge crossroads right now and I'm freaking out about these decisions... Do I quit my amazing job here in FL and move back to IL in search of better healthcare? Do I stick it out a little longer on medical leave and try to find another path to follow? Looks like I'm going back Friday so I'm at least going to give it a shot and see what my body is capable of handling.

I'm turning 30 in 6 months and looking at the very real possibility that I may have to move back in with my parents. It's also true that I've struggled with depression and anxiety for about 12 years, and my life getting stressful only draws out those problems more.

I had acupuncture done today and it was traumatizing. It was really painful. I bled from each poke and I cried the entire half hour my doctor left me alone in the room. Never again.

Sorry for all the whining, I'm just kind of in a rut.

547368 tn?1440545385
Oh No Dear!! I've had acupuncture, several times. It really was a pleasant, relaxing experience. I've never bled from any site where the tiny needles where placed. You consulted a bad acupuncturist. Find another!

It's a bad time of year to head north! You'll freeze! :o) I know we all have to do what's best for us.

Have you thought of consulting a PMP? Search the internet in your area. It's worth a try. They may offer you something, especially the interventional PMP - though be cautious not to get just a "Shot Jock".

Hang in their our friend in pain.

~Tuck
Avatar universal
My Dear Girl - This is where the Grandmother in me comes out!  (Hence the name NamNam.)   :)

I've never had acupuncture before but I've always heard only excellent things about it.  I'm apalled to hear what happened to you!  I'm so sorry you had to go thru this when the entire reason for doing it was to help ease your pain not to add additional pain on top of yours!  :(  

Listen to Tuck!  She KNOWS what she's talking about.  Acupuncture SHOULD be relaxing and pleasurable, not what you experienced.  PLEASE look for a different acupuncturist.  You definitely got one that was incompetent, at least as far as your appointment went.  

I understand you being ready to throw in the towel and head back home.  You're the only one that can make that decision.  You must take care of yourself and your health.  Just be sure while you are going thru all of these trials and tribulations that you get all the help you need concerning all of your health needs, such as your anxiety and depression. I would hate to see you make your choices u need to make if you don't have these under control.  I want you to be sure you're making them wisely, as I'm sure you want to, also.

I know you will make the correct decisions but I hope before you do that you check everything out first and get all the 2nd and 3rd and 4th opinions IF they are needed.  I know you will get the answers you are searching for, sometimes it just takes awhile.  I'm so sorry you are having to face going back so soon.  

You know we are here for you and PLEASE let us know how you do when you go back.  As a Mom AND a NamNam, I must say I'm very concerned for you and what you are experiencing.  I hate seeing anyone in pain but especially one so young as you are.  (Think I've said that before, but it really hits me hard.)  

Thanks again for keeping us updated.  I look forward to your next one.

Your in my thoughts.......Sherry   :)

Avatar universal
Wanted to clarify that when I said "going  back so soon" I was talking about going back to work.  :)

Again looking forward to your next update.  
                                           .......Sherry   :)
Avatar universal
I think I've hit the jackpot with internet friends! You two are proving to be a great support system for me :)

I had an excellent appointment with my podiatrist today and I made a few decisions: one being that I will not be going back to the previous dr. She was the acupuncturist but primarily she was my chiropractor/nutritional and alternative medicine dr. She had me on the detox diet and supplements as well as doing mps and adjustments. I saw her for the entire 3.5 months I was off of work, and with no results, I didn't even lose weight! I also went and got a temporary handicapped parking permit with the help of my podiatrist, and I think I'm going to try my hardest to stick it out here in Florida as long as I can.

I start work tomorrow morning and I am ready to give it 100%. Thanks for the well wishes and kind thoughts!

I may not be on here as often now, but I will keep you guys updated on how work treats my poor tootsies.
547368 tn?1440545385
I wish you the best - and understand why you will not be here as often. Your job is going to be a challenge - and you'll need time to adjust.

I did see a great acupuncturist. All went well (though it was expensive) until she began to sell me supplements and cleansing agents (even more expensive). Being the good patient I was - I took the supplements to my PCP. She said, "Tuck don't take these. Look one of these are even from China."  So the $125 I paid I threw in the wastebasket. I didn't return.

I didn't see a change in my pain. I admit 3 appointments may have not bee adequate - but nothing!! However it was relaxing, soothing and that alone did make me feel better - just no pain relief, if you know what I mean.

I'm glad you're not returning north just yet. If you love the area try to find different medical care.

Good Luck my dear- and please let us know how you are doing.

~Tuck
Avatar universal
I'm so glad that you had such a positive appointment!  :)  I'm, also, very happy that your Podiatrist gave you a temporary Handicap Parking Permit.  You should have been given one when you first went on your leave from work by your original Doctor.  It will help you immensely whether your at work or shopping or whatever you are doing.

IF you check this site when you get home from work this evening, please let us know how you did today as I guarantee you that both Tuck and I are very concerned about you!!  

Thinking of you and wishing you the very best.  ............Sherry  :)
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