I posted this in the main section of Health Unlocked, but I just found out about this community and I hoped someone here could help.
I have a chronic pain condition in both feet that none of the doctors can diagnose. The treatments they have tried did nothing -- some of them even injured me permanently. Right now, after living with crippling pain for twenty years, I am having a night, not the first one, when I am out of my mind with pain. Nothing helps. I want to bang my head on the wall and scream. Sitting here playing computer games, listening to youtube, none of it cuts the mustard. I am getting worse by the hour.
I don't expect an answer really. But maybe someone else has experienced this and can respond with some ideas?
My feet both hurt. Not in a fixed location, except usually my toes are worst, but not always. The left one usually hurts more. They always hurt so much it is unpleasant to stand or walk. Over the course of the day it gets worse. If I stand, walk, or move my feet around, the pain becomes terrible -- but not immediately. Foot exercises result in agony that starts an hour later and goes on for days. Walking on a hard surface such as a cement floor hurts almost immediately. So I pay for even a brief walk through the grocery store. Same thing if a doctor manipulates my feet. I even have to be careful what kind of socks I wear. I tried a new brand, and within 30 minutes it was as if someone had poured sulfuric acid on my feet.
Weird thing is, I cannot tell how much I am hurting myself while I am walking, or standing, or whatever. The terrible increase in pain comes an hour or two later. As I said, I have been to numerous doctors and had all sorts of tests, but no one has any idea what's wrong.
This all showed up with no warning about twenty years ago. I had three years of crawling on the floor because the pain was so bad. Then the pain receded, I have no idea why, and I could usually walk about, but hurting. Now I'm heading back to the time when it is so bad I can't function, period.
No pills I have ever taken for pain do anything.
I lost my independence when this first happened. I lost my life. Now I sit on my butt and waste what's left of it, or go ahead and do a few things, and pay for my choice later with agony.
Can anyone help?
Any thoughts?
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Still me. I wanted to add that my day consists of sitting and doing nothing and going crazy, or fighting the fear and depression and getting up and doing something physical -- and causing myself agony the rest of the day. On a scale of 1 to 10, the pain rates about 500. I make myself crazy choosing.
We’re you ever diagnosed as having arthritis (Rheumatoid ) sometimes certain medications can cause arthritis I believe it’s called reactive arthritis or do you suffer from diabetes?
I lost my thyroid to cancer 3 yrs ago and had developed quite quickly psoriatic arthritis of the tendons, it took 2 yrs to get diagnosed because my arthritis attacks my tendons in my body and doctors usually chalk this up to overuse or overweight.... my feet get the pain the most it feels like I walk around with broken feet everyday and even my current treatments for psoriatic arthritis have not solved my problems.... I believe I went to long unsolved.
For my feet issues I have purchased inserts that I wear every day in every shoe including my slippers. The current insert I’m using is called plantar fasciitis orthotics and so far so good ... inserts for plantar fasciitis should be helpful since your pain is on the bottom which indicates plantar fasciitis issues.
No. Never diagnosed with arthritis. No diagnosis for diabetes (but I suspect I may have low blood sugar issues).
But when I say I have never been diagnosed, I must confess I have not been to a doctor in many years. I was so traumatized by how I was treated by doctors in the first three years I became crippled that I stopped going. Not even considered trying to go to them again (apart from walk-in centers) until now.
When I say crippled -- I mean when this first happened to me I spent most of three years unable to stand for more than a second or two. I crawled on the floor.
Ya. I have Spenko green inserts. I would not be able to stand without them. Can't tolerate orthotics. Nightmare finding a sneaker that doesn't make me worse. Shoes are out of the question.
I am so appreciative of all the feedback I have gotten here. You and so many others have given me a few ideas, but even more have let me know I am not the only one who has gone through this.
I can really relate.... I can hardly walk or stand for any length of time and the only thing that makes these crappy feet pain even a little better is the store bought inserts (they are not what a doctor would provide). You can also try Magnesium, Vit D and K2 ....these work great!
In case your unaware hypothyroidism can also result in abnormal amounts of pain so maybe getting a thyroid test.
Tell me more. Details of magnesium, vitamin D, (K2?). Amounts, how often...
I have had thyroid tests. The idiot doctor came back and told me the results were borderline off. And -- get this -- asked ME if I thought I should be treated for it!
I feel as though it's not possible other people have had as many useless, awful, bad doctors as I have lived through. It's why I couldn't tolerate even one more doctor after three years of useless or bad.
Hey, Batty (really?), I really appreciate all the time and work you have put into our back-and-forth today.
And I am so sorry you can really relate. I wish it wasn't so for both of us.
First thing you need to do is get your hands on a copy of all your RECENT vitamins and thyroid results, its yours and your entitled to copies and then post it in the THYROID forum here....make sure you include the results with ranges.... You will get a ton of usefull information.
I use Magnesium citrate because of IBS-C and I prefer a brand made by a company called SOLGAR thats lactose free and gluten free I tolerate it well but their are lots of different brands that you can research and for Vitamin D3 I use grocery store brand natures choice (no issues) and Vitamin(K) and I purchased Igennus Super B-Complete,Methylated (1/2 tab and build up) this is what I was instructed to do (so I do it).
Research: Different types of Magnesium, Vitamin D3 and Vitamin K.... I will look up some stuff and post....I purchase through Amazon it seems the Corona Virus has people scrambling to get these vitamins.
These vitamins really do help with pains at least for me.
Info I found: Don't forget we also need magnesium for the body to convert D3 into it's usable form, and because D3 aids the uptake of calcium from food then we need Vit K2-MK7 to direct the calcium to bones and teeth where it's needed and away from arteries and soft tissues where it can be deposited and cause problems.
I'm asking because this Catch 22 (doing nothing and feeling like a waste of space vs doing things and causing myself more pain) is an ongoing nightmare for me, and any feedback here would be so helpful.
This maybe a poor reply, but have you tried alternative therapy such as Chinese Style Acupuncture?(minimum 3 years training) Or Healing or Reiki or Acupressure ?And I’m thinking your post, reads as neuropathic pain maybe related to you spine. But my knowledge is limited.
Nothing poor about it, Rosepetal. (I am half-Lebanese, and the smell of rosewater brings up such comforting memories of Mom's kitchen.)
I have thought about acupuncture for too long without doing anything about it. I have no idea how to choose who to go to. Pathetic? Yup. Stalled in depression for lots of years, since the first three years of going to doctors to get my hopes raised and dashed.
Neuropathic pain rings a bell for me, but not for any of the XX@!ZZ MDs I attempted to discuss it with. One of the arrogant so-and-sos actually said "Which one of us is the doctor here?"
And I'm sure my back is involved. When I was getting PT for back pain my feet improved.
I'm ready to start going to doctors about this again, but if the same crap repeats they better expect a piece of my mind this time.
For me, Acupuncture had to work, because there was no help from anywhere else. I tried 4 Acupuncturists before finding number 5 that had sufficient qualifications, experience & able to help me. Number 3 caused me more pain. So in searching the right one, this person needs a minimum of 3 years training-preferably in China but unlikely these days, so would need to be trained in the traditional Chinese style Acupuncture. But maybe difficult to find. Ideally a practitioner with advanced training would be best but think that is unusual or difficult to find. A lot can depend on where you reside in the world & the regulations. In the UK I feel it has become more difficult. And in other countries too.
The thing to ask the practitioner is: can you help my condition, have you helped people with this condition before, Find out their years of experience, & where they trained. Many train at universities these days.
Traditional Chinese Acupuncture is about meridians and so much more. Meridians are NOT nerves. Meridians help move the energy round the body. Free the body of blockages. It makes Fascinating reading.
Thank you so much! I have gotten so much from your post. If I went to 2 practitioners who did not help me, I think I would have stopped trying acupuncture. I know for sure I would have quit after number three hurt me.
Oh my gosh you are determined! Your post is so inspirational. I want to be as brave and relentless an advocate for myself as you have been.
Have you seen a podiatrist? They are the experts at everything below the knee. Even if it is being caused by something in your back they would be able to tell other doctors to explore that by discounting what is happening in your feet.
I don't know if all podiatrists are "limited", but so many kinds of doctors have so much power, and so many of them are callous, or idiots, or callous idiots.
I went to a podiatrist. He was a monster and he hurt me with callous indifference. Also at the time I had a physical therapy place I loved, and had good results with. The monster podiatrist asked me "Do you trust me?" Whoa! Danger Will Robinson!!! And he said only the office he worked with directly was qualified to follow his treatment plan.
So I went there. It was a dump with a single unqualified idiot running everything. By the time I realized this jerk had nothing to offer and tried to go to my preferred place, my allowed number of PT weeks had run out (The HMO counts from when you start, whether or not you are going.)
A couple of weeks later, while shopping at the mall, I overheard a couple of women talking about a crooked doctor who was getting kickbacks referring patients to a PT office he had an investment in. I introduced myself and asked. Yup. You guessed it. Damn, why do these guys keep getting away with this?
I have a lot of foot pain - nothing as bad as you, but three years ago broke both my ankles in several places, one of them in a v bad state. Because if both the nature of the injury and the fact that I already had problems because of rheumatoid arthritis and fibromyalgia they never fully recovered (the bones were fixed but soft tissue pain remain).
So I have some empathy. All I can say is that I manage with a cocktail of medications - gabapentin for nerve pain, etoricoxib for inflammation and strong co-codamol, plus morphine when needed (I take most days). Take one of those out of the equation and it all falls apart - forgot my anti-inflammatory yesterday and as a result woke in the night like you in agony. Tried distraction, tried heat, too tired to get ice, and eventually gave in and took an extra dose of oramorph. Which worked.
I have tried acunpture with success too in the past - found really helpful as part of a treatment for an acute injury (a previous bad ankle sprain) and for chronic pain - hips and back. In the case of the latter it has been short term relief rather than a cure, but I’m sure even that would help your situation. I have had it done by physiotherapists - privately and on the NHS as part of my treatment (and the latter recommended looking for local Chinese practitioners if I wanted to continue).
Wow I am running into a lot of triggers here today. Gabapentin (aka Neurontin) was given to me (off-label use) by an orthopaedic foot specialist. He put me on the maximum allowable dosage. It permanently caused hearing loss, vision loss, balance issues (falling), peripheral edema, venous insufficiency, and disfigured me. It gave me no relief of any kind.
Tried to sue him. Since no one, including him, had ever given me a diagnosis, he could do anything he liked to me and nothing I could do about it.
Have you thought of having a Mobility Scooter, I know it won't help the pain, but it would allow you to go out and to shop. I have used one for many years following back surgery which makes it painful to walk on hard surfaces.
I am not able to shop but I live too far away from the nearest shop to use the scooter anyway. My husband puts it in the car when we go out together but I mostly use it round the Village in which I live. To go shopping I would have to use the car.
There is a lift that attaches at the rear of your vehicle that can hold a wheelchair or mobility scooter. It goes up and down (by battery or electricity), so it is flush with the ground when you load and unload it. It's very easy to use. I hope this helps!
I'm so sorry you are going through this. I know this is a silly comment but to help a little, have you tried hotor cold packs? It clearly isn't going to fix the problem but perhaps a slight easing?
Not silly I think. Unfortunately heat does nothing. Cold pack right under my toes does ease the pain, but I'm afraid of circulatory problems, frostbite. I don't try it very often.
Hello ! I feel so sorry for you. What you are describing sounds exactly the same as my pain, but i have it all over. The worst is the feet and the legs are getting really bad too.
My day on my feet is short . I feel the increased pain when my feet are up . Its dreadful. I sympathize with you.
I keep hoping someday i will see a post where someone found a miraculous cure for us. It can still happen.
In the meantime, i keep trying new things and going back to try again old things in hope for any relief. Ive has this so long i dont even know how long. It started off mild about 30 +years ago. Im 65. Im still mobile. I walk my dog 4 x a day and go practically straight right back to bed on a computer in terribly increased pain. I get up to do minor things and try to keep.it short just so things stay manageable.
Yes, a trip to store , or anywhere, and we suffer more for it.
I understand. You are not alone.
I hope you have, or will find, ways to find some relief.
What can I say? Thank you so much for responding. I appreciate your kind words. I know, too, about doing things you want to do and paying for it later. I hate, hate, hate hearing about the terrible pain you are living with, but I am comforted to find out, after 20 years of thinking I am the only one in the world... I'm not making much sense, I think. Maybe you can piece it together.
And I hope you will find relief. Soon.
Take this or leave it, I know it's nuts. I may have found one small help. Maybe? If I keep well hydrated, and add a cup of coconut water to what I drink every day, maybe it helps?
This came about all by accident. I had a bout of diarrhea for a few days, and I got some coconut water to be careful about enough electrolytes. Then even though my feet are usually much worse during digestive disturbances, they improved a bit.
Take this with a grain of salt (not literally ha-ha), you probably know that you grasp at anything. But what can it hurt to give it a try?
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What is your opinion? Should I urge my doctors to take my pain more seriously? 
I'm new here... PLEASE HELP I just want the pain to stop!! 
I'm new here! Reading with chronic joint pain
Why can't I have pain free feet?!
