[iamfrustrated]

I have been to a number of doctors without any clear diagnosis. I will briefly describe my symptoms below and would greatly appreciate your thoughts:

I used to go to intense fitness/yoga classes 5-6 days a week. My left foot started acting up. I did RICE but it wouldn't heal. It felt a bit better a few months later but by that time, my right foot started hurting.

I was initially told tendonitis. I have flexible flat feet (very flat). The pain was mainly on the inside of my ankle (posterior tibial area). The pain on the inside is a strong ache with every step. Two months later, my toes started to hurt as well. There is some burning pain throughout.

My feet (mainly my right, a bit in my left) are always in pain and I don't know what's wrong. Doctors spend a few minutes with you and are of no help. Clean MRI, Clean X-Rays, Clean EMG/NCS. I recently had a different kind of NCS and it did show some hypoesthesia for a few nerves - which does happen in neuropathy.

The consensus is that its basically 'nerve related pain'. Tarsal tunnel, neuropathy, nerve pain, etc were all mentioned but never confirmed. Obviously the flat feet don't help. I refuse to turn into a zombie on medication so I've tried TONS of alternative treatments (most didn't work at all, a few helped but only temporarily).

I have done well for myself and would gladly pay ANY amount of money or travel anywhere to have my life back.

A few additional details:

- This problem is about 2+ years old.
- I am 26 years old, not overweight.
- I can't run, walking causes pain, sometimes there is pain even at rest.
- My knee, hip, lower back, etc have all been acting up since this started.
- I have had a handful of odd symptoms since this all started (dry eye, dry mouth, bald patches in beard, cold feet, cold hands, a bit of weight loss).

YOUR thoughts would be GREATLY appreciated.

[RunWriteMomHeal]

Sorry you've found yourself here but it's a great resource and support group. The first thing that comes to mind for me reading your story is auto-immune. What kinds of autoimmune bloodwork have you had? Have you visited a rheumatologist for a full workup?

I'm assuming a lower back MRI ruled out anything spinal there?

Originally Posted by iamfrustrated

I have been to a number of doctors without any clear diagnosis. I will briefly describe my symptoms below and would greatly appreciate your thoughts:

I used to go to intense fitness/yoga classes 5-6 days a week. My left foot started acting up. I did RICE but it wouldn't heal. It felt a bit better a few months later but by that time, my right foot started hurting.

I was initially told tendonitis. I have flexible flat feet (very flat). The pain was mainly on the inside of my ankle (posterior tibial area). The pain on the inside is a strong ache with every step. Two months later, my toes started to hurt as well. There is some burning pain throughout.

My feet (mainly my right, a bit in my left) are always in pain and I don't know what's wrong. Doctors spend a few minutes with you and are of no help. Clean MRI, Clean X-Rays, Clean EMG/NCS. I recently had a different kind of NCS and it did show some hypoesthesia for a few nerves - which does happen in neuropathy.

The consensus is that its basically 'nerve related pain'. Tarsal tunnel, neuropathy, nerve pain, etc were all mentioned but never confirmed. Obviously the flat feet don't help. I refuse to turn into a zombie on medication so I've tried TONS of alternative treatments (most didn't work at all, a few helped but only temporarily).

I have done well for myself and would gladly pay ANY amount of money or travel anywhere to have my life back.

A few additional details:

- This problem is about 2+ years old.
- I am 26 years old, not overweight.
- I can't run, walking causes pain, sometimes there is pain even at rest.
- My knee, hip, lower back, etc have all been acting up since this started.
- I have had a handful of odd symptoms since this all started (dry eye, dry mouth, bald patches in beard, cold feet, cold hands, a bit of weight loss).

YOUR thoughts would be GREATLY appreciated.

[DavidHC]

Sorry to hear you're having all these issues. General inflammation, autoimmune seem likely or certainly plausible. Dry eyes and mouth in particular can signal Sjogren's. I have both those symptoms and will soon be tested for it. Have you had an ANA panel? Also, I'd suggest checking your vitamin D levels, if you already haven't.

Originally Posted by iamfrustrated

I have been to a number of doctors without any clear diagnosis. I will briefly describe my symptoms below and would greatly appreciate your thoughts:

I used to go to intense fitness/yoga classes 5-6 days a week. My left foot started acting up. I did RICE but it wouldn't heal. It felt a bit better a few months later but by that time, my right foot started hurting.

I was initially told tendonitis. I have flexible flat feet (very flat). The pain was mainly on the inside of my ankle (posterior tibial area). The pain on the inside is a strong ache with every step. Two months later, my toes started to hurt as well. There is some burning pain throughout.

My feet (mainly my right, a bit in my left) are always in pain and I don't know what's wrong. Doctors spend a few minutes with you and are of no help. Clean MRI, Clean X-Rays, Clean EMG/NCS. I recently had a different kind of NCS and it did show some hypoesthesia for a few nerves - which does happen in neuropathy.

The consensus is that its basically 'nerve related pain'. Tarsal tunnel, neuropathy, nerve pain, etc were all mentioned but never confirmed. Obviously the flat feet don't help. I refuse to turn into a zombie on medication so I've tried TONS of alternative treatments (most didn't work at all, a few helped but only temporarily).

I have done well for myself and would gladly pay ANY amount of money or travel anywhere to have my life back.

A few additional details:

- This problem is about 2+ years old.
- I am 26 years old, not overweight.
- I can't run, walking causes pain, sometimes there is pain even at rest.
- My knee, hip, lower back, etc have all been acting up since this started.
- I have had a handful of odd symptoms since this all started (dry eye, dry mouth, bald patches in beard, cold feet, cold hands, a bit of weight loss).

YOUR thoughts would be GREATLY appreciated.

[SylvieM]

Hi there,

Because I'm laid up now with neuropathic symptoms (dysautonomia), I have time for quick research about your case and found that flat feet can cause all sorts of problems....they can also can get precipitously worse: ie "fallen arches." Consequently, this can affect other joints and muscles...which is why you might have pain in your back and knees, etc.

My sensory neuropathy is relatively new: >year.....and is worsening relatively rapidly. I have positive skin biopsies confirming nerve damage. As far as I know I don't have an underlying autoimmune disorder. I think my pain might differ from yours .....
( you can compare)

My neuropathic pain:

- worsens suddenly at night
- is weird...sort of vibratory and electric
- I have weird sensations...now sort of like someone is pushing bristles from the inside to the outside of my skin (paresthesias)
- jumps around...top of foot, knee, shin...in minutes
- I have allodynia....sensitivity to my socks, pants, carpet as I walk...this worsens at night
- I have hair loss on my legs
- I have sensory loss (determined at neurologist.....when they poke with pins and hold a tuning fork against you)

Now your dry eye, mouth, hair and weight loss may point to sensory and/ or autonomic neuropathy...I have both...and I think you should definitely check this all out.

It still might not be autoimmune...most neuropathy is idiopathic. But see a rheumatologist to be on the safe side. Mine is most likely from medication that was neurotoxic for me.....don't know for sure. My autonomic symptoms are far more disabling than my pain now (very deregulated blood pressure and heart rate....do you have any signs of this?)

Autoimmune diseases underlying neuropathy, like Sjogrens, are far more common in women...but do occur in men.

My hope is that you are getting older and your flat feet are collapsing further...that is definitely the best case scenario! What is really difficult(as you suggest) is finding a good neurologist and a rheumatologist to work with you on this....

Please update .....!

[iamfrustrated]

Yes, I got two different lower back MRIs, both normal.

I've gotten a variety of blood testing done, including from a rheumatologist. It all pretty much came back normal. A few notes:

- Vitamin D was extremely low (4.9 - I quickly supplemented and got it up into normal range)

- Creatine kinase was low (but I'm told it doesn't matter)

- Inflammation hs-CRP was just slightly high (way back in 2013)

Originally Posted by RunWriteMomHeal

Sorry you've found yourself here but it's a great resource and support group. The first thing that comes to mind for me reading your story is auto-immune. What kinds of autoimmune bloodwork have you had? Have you visited a rheumatologist for a full workup?

I'm assuming a lower back MRI ruled out anything spinal there?

[zkrp01]

Since there is a chance that the root cause might be in your feet, a good podiatrist visit may be advisable. The world of nerves and Neuropathy is very other worldly and any obvious suspects need to be eliminated if possible IMO. Good Luck, Ken in Texas.

[Littlepaw]

I concur with Ken. While it is a good idea to look at autoimmune causes he is right that there can be a lot going on and all issues should be ruled out. I am a tarsal tunnel gal and had to have surgery for that, but many, many cases can be treated conservatively. Over use, exercise, shoes with too aggressive an arch can all put pressure on the tarsal tunnel and cause the symptoms you are describing.

Podiatry is a good resource as is Foot and ankle orthopedics or even Physical Medicine and Rehabilitation. I see a PM&R doc who is a whiz at ultrasound guided injections. They sometimes will do a steroid injection to "bathe" the area and decrease swelling and inflammation both in the tunnel and around the nerve. Physical therapy can help too.

I hope you find relief soon!

[chris85]

I am a similar age, male 29 and have had issues after intensive yoga retreat. Unfortunately my teachers werent the best in india. It started with a knee problem with me then spread to arms,lots of neuropathic pain, no swelling, I've had dry mouth but it is OK at the moment. Obviously you need to see a rheumatology and neurology expert. Problem is some people's bodies if they get too stressed they start messing up bad. I'm on lyrica and naproxen which help but I doubt I'll go back to pain free again. All tests are negative for me. Sorry to hear your suffering.

[chris85]

This zombie medication thing is possibly a bit over rated im on lyrica and amtrypylene atm and im fine, im a programmer and i can still do it fine. alternative therapy is like a big bucket you throw all your money into.

[iamfrustrated]

@DavidHC ANA panel was clear. Vitamin D was super low (4.9), but I've supplemented and got back into normal range.

@SylvieM Although I do have flat feet, a few doctors have told me that they have seen others with feet just as flat without all of these other issues. They just prescribe orthotics, which help a bit temporarily, but aren’t really a fix. I have gotten work up done from a rheumatologist but it all came back normal.

@zkrp01 I have seen 4-5 different podiatrist. They are all essentially the same. They can give you pills, orthotics, braces, RICE, etc - but outside of those few tricks, all they have left is surgery. I’m told that my condition isn’t a candidate for surgery.

@Littlepaw Tarsal tunnel was mentioned but never confirmed. I have zero arch when I am weight bearing. I’ve tried all the conservative treatments without any results. I definitely did over use, no question about that. I just don’t know how to stop the pain.

@chris85 Well, I can only speak for myself, but strong medications just aren’t my cup of tea. Aside from feeling like a zombie, I also get stomach/chest issues from them. I definitely agree with you in that when some bodies get too stressed, they start messing up bad.