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I'm liking this Marie and Julie...let's continue....
Bless our hearts.....we'll get through this. Please disregard any stupid stuff I may write...I've been up all night with feet pain and stuff rolling around in this empty head of mine. I feel like telling my story....Enjoy and tell me yours please. I'm a new member but really am enjoying this. I try not to bother my family with all the pain and struggles. I just say I'm 'fine' and go on###lol
I'm 51 years old and am married to Bubba #his na#e is James but the grandchildren call him Bubba###too funny## I have 2 children, a boy and a girl, and 6 grandchildren# I was laid off from my job of 26 years last Sept# All I'll say is I am a woman with a brain and I made too much money# No college just life experience# My daughter got married 2 weeks later on a dock on St George Island in Florida #great fun## Exactly one week later I had a hysterectomy for excessive bleeding# No big deal as far as me and my Gyn were concerned# 2 weeks after that #Nov 2012# he called me into his office# I knew something was wrong# When they did the path report it said they found cancer in my uterus# It's call Serous and is a very rare and aggressive cancer# Mine was small but they hit me with 6 rounds of chemo, Taxol/Carbo that ended Mar 27, 2013# I should mention that my dr kept me listed a pre-diabetic even though I was diabetic really for insurance reasons# Before chemo the only neuro pain I had was burning in my toes at the end of the day but didn't think much of it# I had mentioned it to the dr but didn't ask for anything# At that point I knew absolutely nothing about neuropathy# The onocologist briefly mentioned it and asked each time I came in what my symptoms were# #numb mouth and tongue, no taste, sensitive to hot and cold running water on my hands and feet and some numbness in my feet## Nothing major# EXACTLY a month after chemo ended I started having a hard time walking, off balance, kept dropping and knocking things over# My sweet dr said neuropathy and ran tests #nerve conduction, that needle thing, X- Rays of spine and neck, MRI of neck and all sorts of blood work## Nothing remarkable in any of it# Drove me CRAZY# I come from an accounting and claims background and 2 + 2 = 4 not 2 + 2 = who knows...lol. Then I basically had to set out on my own to figure all this out. Went to see my onocologist #they never want to say it was the chemo# I was already of the opinion that I had neuropathy and the chemo just escalated it. Then I saw a neuro and finally a foot ankle dr that actually #well 1/2 way# listened to me. By that time I was up to 1,800 mg a day of gabapentin/neurotin with no pain relief. I had to ask for the skin biopsy but he was more than happy to do it. The results came back on Sept 19 and state "epidermis essentially devoid of fibers" and "The utter absence of fibers following test is indicative of advanced small fiber neuropathy". Dr said nothing he could do....mine was basically a 0 out of possible 15. I cried because I was soooo relieved to have a diagnosis. My husband apologized for not fully believing me #nice#. He said the only thing I could do was see a pain mgmt. dr and try and get some of my quality of life back. I do not drive unless absolutely necessary, I hurt 24/7....ebbs and flows all day long, home 99% of the time because even riding in the car causes pain. Anytime my feet are on a surface the nerves get stirred up. So....I do a little around the house and sit in the recliner and that goes on all day long except for the bad days....those are mostly spent doped up and sleeping. The electrical currents you mentioned are the worst....feels like they are trying to shoot out the end of my toes :) burning, numbness, stinging, cramps in ankles and so on. Went to pain dr this past Mon, Sept 30. He says since the gabapentin is not working the only options I have left are sympathic nerve block in my lower back, which he said is only doing to get approval for the neurostimulator. I am terrified to even think of anyone coming near my back with a needle. Had both my children without meds because I did not want an epideral. So....here I am......nerve block on Oct 8th........said he would give me a valium and I could take one of my Xanax. So I'll just float in and get it over with. I do take 1/2 a vicodin for pain when needed. My pain has worsened over the last 4 weeks and the left side of my left foot is swollen and EXTREMELY painful....and that is a new symptom. Did I really just type all that ? My eyes are blurry....lmao Got all the windows open in the house and the breeze feels so good #as long as it's not blowing on my feet# :) Looking forward to hearing from you...thanks for listening....I feel so much better. Debi |
Debi, have they not offered you anything else for the pain? I am on 30 mg. extended release morphine twice a day, moving to three times a day, with 7,5 mg oxycodone for breakthrough pain.
Like you my biopsy used the word "devoid" of nerve fibers. I also have advanced large fiber neuropathy since mine is hereditary. I function pretty well on the pain meds. Doctor just doubled the morphine to get me off the oxycodone, more for his benefit than mine I suspect, but I am doing okay. I drive within a 3-4 mile radius, no more, do laundry now that it is moved upstairs, and some cooking, but not much else. We are the same age, I have five children, one grandson, and another on the way. My youngest is 14 and three sons live at home with my husband and I. We will be married 31 years at Christmas. Mornings are pure hell and I need help to get out of bed or I roll around and pull at the covers for leverage. I enjoy walking, but pay for it later. Welcome to the forum! So much help is available here and if you just need to vent this is a great place, we all listen and understand what you are going through. |
Swollen foot?
I would be very careful with that symptom. As your nerves change, the tiny signals in the tendons, are lost, and walking can place unusual stress on the bones, which you would normally compensate for with proper feeling. What then happens is called Charcot foot...and is pretty common in diabetics. But it can morph into a nightmare if not taken care of. Tiny cracks in the ankle joint or in the metatarsal bones, can lead to tissue damage. http://en.wikipedia.org/wiki/Neuropathic_arthropathy I just went to my podiatrist before my vacation and he checked both feet for this with Xrays... my swelling was not due therefore to Charcot foot changes, but instead from spurs in the ankle itself (arthritis was the explanation this time). Since having my big toe nail removed, my swollen ankle has gone away....? duh? I don't understand this. But it continues to be unswollen since last July. It was swollen for years, on and off with no diagnosis/or explanation from either my internist or podiatrist. |
Help Mrs D !
Mrs D...now I'm a little worried. I noticed that something was changing along the outside of that foot maybe a week or two ago. I had company all day Saturday and even though I tried to sit with my feet up I did walk around more than usual. Sunday was spent in the recliner just getting up to go to the bathroom and short walk around the house with the dog. By Sunday night I was in tears, took 1/2 a vicodin and 1/2 a Xanax which is the combo that works best for me when the pain is bad. I then wrapped my Chillow (that had been in the fridge) around that foot for about an hour and that did relieve some of the pain and swelling.
Your thoughts on that ? Should I see foot dr and let them xray ? No one has xray'd my feet since this whole thing started. And finally......I told my neighbors about having the sympathic nerve block next week and then moving on to the neurostimulator.......they know 3 people that got relief from acupuncture. We live in a very small town in GA and are an hour away from 2 big cities. Are there any posts on here where someone used acupuncture for neuropathy ? I've really nervous about them sticking a needle in my back for the nerve block :( Thanks as always.....Debi |
Hello there Susanne !
Susanne this has all went soooo fast for me. From May 1st to now (1 month after chemo ended) I developed this pain in my feet that has been increasing since then. 3 weeks ago I was still able to run into the small Dollar General for an item or 2 but can't do that now. I could go 2 days without pain meds. Now.......I've been on them everyday for at least 2 weeks and have had to add the Xanax n there quite a few times too. But it does make the pain bearable. None of the doctors I have been to have discussed pain management until I went to the pain mgmt. dr yesterday. I know what type of day it's going to be as soon as I put my feet on the floor. I sleep with my feet off the side of the bed because they are so sensitive to the sheets. Walking is my worst enemy. That always starts the electrical impulses that try to come out of my toes. I do excerise my legs while sitting at the dining room table and swinging them back and forth as I type, read or whatever. I also have an ottoman under the table....lol....you do what you got to do right ?
Thanks for all the caring...I've been holding this stuff in for months because I know the husband and kids don't want to hear it. They just have to deal with me in pain. They are so good to take out trash, cook and wash dishes, sweep the house and all the good stuff. Debi |
Quote:
nano particles of aspirin to dissolve very quickly.) But not everyone is allowed aspirin by their doctor. So check and see. If aspirin takes it down, in a couple of days with the ice, it may be okay. But in the meantime, do an image search of Charcot foot and text search on Google and learn about it. Really it is pretty common in diabetics. I think it should be addressed before a block or SCS....because that would mask the pain, and hide the Charcot damage if it is happening. Swelling and discoloration (red and purple), excess sweating and increasing pain may also signal RSD... We have an RSD forum here: http://neurotalk.psychcentral.com/forum21.html This type of sympathetic neuropathy, is often misdiagnosed for people. Charcot foot is not the same as CMT (Charcot Marie Tooth neuropathy). It is named for the doctor who discovered and described both conditions. |
Mrs D....thank goodness..nothing like that (pics)
I looked at the pics......nothing like that. But oh how I feel for those people.
If you feel half way down the outside of your foot there is a small knot, for lack of a better word. That is what is slightly swollen but EXTREMELY painful. I just went outside with my dog and actually had to take my sandal off and walk flat footed or on my toes. Came back in and took 1/2 a vicodin. Both of my feet hurt but that one place is BAD. Just part of PN ? Just when I thought it could not get any worse....going to lay down and let the pain pill work and then will come back and see what you say. I just don't understand. :( And I might as well say I loved the pain dr but that whole bldg. is nasty. I'm worried about getting a nerve block there.......guess I just need to bit the bullet and see another clinic. So sick of this already and only 6 months in. |
I'd get that X-rayed if I were you.
Do you know what your bone density situation is? That is the last metatarsal bone in the foot, and commonly is where stress fractures occur. I know a gal who just squatted down to get something out of a low cupboard and broke that bone! She didn't seek help right away, and ended up getting a bone scan which showed the break clearly (it was too late for X-rays). She had terrible pain from this, and no PN at the time, and it took a long time to heal. My husband had a stress fracture of this same metatarsal in basic training (on his way to Vietnam)... they put him in a cast for weeks. His cracked from just marching with heavy packs uphill and downhill doing the training moves. If you use GERD drugs, the acid blockers, they lead to osteoporosis and leached bones. If your Vit D has been low for a long time that would be also a risk. Osteoporosis affects women more during and after menopause, but osteopenia can come before then if your density is poor. This is a great link for all sorts of foot pain... http://www.northcoastfootcare.com/ Stress fractures: http://www.northcoastfootcare.com/pa...Fractures.html What you describe sounds like the last metatarsal bone. This link has anatomy pictures all over the site to illustrate many conditions. If your knot were at a joint, it could be gout or pseudogout. There are just so many things involving the feet. |
Mrs D....maybe peroneal tendonitis which is at the...
It's at the 5th metatarsal bone just like you said. But I've had no injury to my ankle and they associate this with athletes.....boy is that funny. I walk weird because my feet hurt....wonder if I irritated one of those tendons on the foot part. They wrap from the ankle to that area. All I can say is that it is a new hurt and is driving me crazy. I am using my Chillow on and off all day and it does help. Guess I need to see my foot dr and confirm our diagnosis :)
You are so good at this and so caring. I had to add a 2 mg valium to just be able to breath again. I realized I was crying and holding my breath because it hurt so bad...I've never done that before. I don't use any GERD drugs.....On a lighter note...my dad was in Vietnam too, came home for a year and was sent back to Tiland (sp ?)....I'm an Air Force brat. Debi Thanks again and I'm sure I'll be bothering you a lot more as I work my way through this maze. |
If it hurts that bad, you have something seriously wrong.
That is the basic rule for pain. Broken bones hurt terribly. Acutely. And you don't need to remember what you did either. My husband was only 20 yrs old when he broke his metatarsal. He didn't know it until he took his boots off at the end of the day. He couldn't get them back on the next morning and went on sick call. They made him stand in a long line for over an hour. Finally his Xrays came back with 2 orderlies who CARRIED him back to the exam room for treatment! He recalls it was just horribly painful! And so was my friend's broken bone! She was in her later 40's though, and not young like my hubby was. Any sudden acute pain in the foot should be seen. You never know what you may find but the pain is a signal that something is wrong. Stay off of it...and keep it elevated until you see a doctor. Good luck! |
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