toe saga continues

  1. i cant take this anymore. im so lost...i no longer have any kind of perspective.
    im hoping someone here will be able to help me clarify my thoughts in order to get a plan of action. i dont know what to do anymore.

    last april i noticed a black spot on the great toe of my left foot. extreme pain. stayed off the foot, spot stayed pain subsided.
    may 22...pain came back ten times worse than ever. spread to the foot completely and up above the ankle.
    multiple visists to pcp, specialists...diagnoses ranged from gout to cutting my toenails too short. purple/blue of whole toe and partial interior part of left foot.
    pain increasing. given scripts of narcotic pain killers off and on to treat pain. good pulses present in both feet/toes
    june 16, both feet black and mottled. admitted to hospital. excrutiating pain. vascular studies are "normal". pulses present.
    june 18, angio performed ...aortic stenosis...stent placed in part of aorta near where it branches off to supply the lower body.
    color improves, pain does not.

    doc after doc after doc after doc.
    pain is increasing in intensity. pcp refuses to perscribe narcotics as many years ago i developed a dependency to a duragesic patch i wore for months. referred to pain clinic.
    vascular studies repeated...exact same outcome as the day before the angio..."normal" ...vascular surgeon signs off.

    first available appt to pain clinic is over a month. pain treated thru ER'S with narcotics. EMG done...nerve damage to some of the secondary nerves in the right foot. ...probable neuropathy. (from poor blood flow for an extended period)
    neurology consult....A MONTH AND A HALF TO GET AN APPT.

    visit to the pain clinic...
    s/s...swelling of left foot/ankle...inability to bear weight. toes turning colors ....went from bright white to deep purple during the exam. blanching of right great toe, sweating of lower extremeties.
    at that time the pain was centrally located in the left foot/calf.
    was given topromax as a trial of neurontin was unsuccessful. also given specially mixed lidocaine cream. sympathetic nerve block scheduled for SEPT 3.. to rule out reflex dystorphy.
    pain clinic docs refuse to order any pain medication to treat the pain other than those two. there has not even been a diagnosis of neuropathy yet. docs said that it will take 2 months for the topromax to work. i asked them what i should do to treat the pain in the meantime and they said to keep doing what im other words....suffer.

    friday morning i awoke in so much pain i couldnt stand it. it has now spread to both legs from the tops of my thighs to the tips of my toes. they BURN like they are on fire...literally. walking is torture. i cant get comfortable. i can sit for a few minutes, then i have to lay, then sit then lay. sleep is impossible. the cream helps some but not much. there is also great tingling in both legs and violent twitching of my right leg.
    i went to the ER and had my pulses checked....they were good...i was given 15 vicodin at that time. since one vicodin is ineffective that means i had 7 and a half doses.
    i was out by late sunday night.
    monday was one of the best days ive had in a long time. i didnt need ANY pain meds other than advil. the cream worked well. although i still had constant pain to both my legs, i was able to control it with position changes and the cream.
    i went to bed about midnight...still feeling fine when my legs started cramping and burning.
    i rubbed the lidocaine cream on both legs all the way to the top liberally. it didnt help at all. i kept changing positions. i tried imagery...i tried diversion. i tried EVERYTHING. i never slept. i tossed and turned and hurt and cried. and i hoped it would pass.
    about noon today i called the pain clinic. i am waiting to get into a new pcp as i feel his refusing to treat my pain is malpractice in itself but that takes a while for my insurance to change over.
    the pain clinic is supposed to be handling this.
    their solution was for me to go to the emergency room.

    i got the same doc i had friday which was cool cos i think hes good...this is the hospital where i work btw.
    he felt that i am having a dependency problem because i am asking for pain pills and going to the ER. he told me this could not continue.
    the ONLY reason i was there was that the pain clinic sent me there. the er doc sent me back to the pain a ping pong ball.

    i am greatful for the concern of the ER doc...really. but NOBODY is helping me. he called the pain clinic and gave me 10 vicodin. i dont get the nerve block..which im not sure will even work...until sept 3. cant see the neurologist until sept 4.
    10 vicodin are not going to last me. when it comes back like this again im going to just be screwed. totally absolutely screwed.
    when this pain hits me as it does, my blood pressure goes up. today it was 159/100. this is with 100 of lopressor.
    when my pressure rises like this i get a migrane. i cant eat. i cant sleep. i cant walk. i cant do ANYTHING ...literally....i cant do ANYTHING.
    even with the pain control of vicodin my activities are restricted. i havent been able to work. i cant go anywhere. i cant walk for long periods, i cant stand. my pain is constant and at times extreme.
    i just want my pain under control. i dont necessarily NEED narcotics to do that but they are what has been giving me some relief. i will try ANYTHING. im at this point considering accupuncture.
    i dont know where to turn next. who do i go to? i am so terribly frightened of the pain as well as them never being able to determine what is causing it. i cant live my life like this. its not a life. its sure not living.

    i let the ER doc have it. i yelled and i cussed at him. i snapped. im so tired of being tossed back and forth. nobody is denying there is something wrong with me...they can see that there is ...but nobody knows exactly what. my doc at the pain clinic let me know that he doesnt have a magic bullet. its going to take time to find the what do i do in the meantime?

    why am i so wrong for asking for pain relief?
    i dont understand.
    and i feel so betrayed by the very system i am a part of.

    im so lost
    Last edit by thisnurse on Aug 27, '02
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    About thisnurse

    Joined: Oct '01; Posts: 975; Likes: 52
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  3. by   kaycee
    {{{{{thisnurse}}}}} Let me think about this for a while and then I'll pm you. I know how chronic constant pain can alter your life. You are in my thoughts and I will get back to you.
  4. by   slinkeecat
    I do not know if this will help... but I have terrible diabetic neuropathy feet and legs...
    I take 800 neurotin and 800 Motrin TID it has helped tremendously. I suffered and the burning was the worst. I use hot baths to help the legs relax and find it helps also.
    I also keep my Diabetes in check and it helps decrease the pain when my blood sugar is WNL.
  5. by   BBnurse34
    This nurse, I am sorry that you are having so much pain. You are in my prayers. (I don't have any keen ideas.. sorry. I wish I did)
  6. by   GPatty
    You are in my prayers.....
  7. by   BadBird
    Oh my God!!!! I can't believe that the Dr. will let you suffer like that. I would definately change Dr's and call the specialists daily and annoy them into taking you earlier, mabey your doctor could call on your behalf. I know what relentless pain is like from when I herniated a disc in my back, I suffered for a week stuck in bed until I went to the ER, I told them to kill me or cure me and I didn't care which and I meant it, that pain is horrible. Can't you be admitted for pain until the specialists can see you? I wish you all the best, please keep us informed. God Bless !!!!
  8. by   moonchild20002000
    i don't know if this will help you. I have pretty extensive vascular disease in my legs.I have experienced the burning pain and sharp pain you have described. In my case its due to decreased circulation. I walk a lot and that has really helped for some reason. The more I walk,the better I feel.

    You may want to see another vascular doc for a second opinion.PM me if you want to.Good luck.
  9. by   semstr
    O my God, feel so sorry for you!
    Strange thing isn't it? Are you sure there isn't something in that toe you stepped into? Could be months ago?
    My mum had something similar years ago, she stepped into a needle, that broke of and the tip couldn't be find for months after.
    Finally a dr. found it in the joint of her big toe.
    hope you get something against your pain, don't give up asking, they have to give you something better!
  10. by   SmilingBluEyes
    ((((((((((((((this nurse)))))))))))))))))) How awful for you. I so sorry for your suffering. BIG HUGS!
  11. by   thisnurse
    thanks you guys

    ive tried neurontin....extreme nausea with dry heaves
    ive tried toprimax....irritability, insomnia and muscle twitching of the right leg.

    it does sound like diabetic neuropathy but im not diabetic. i told the doc last night that if i were diabetic he would treat me. he said....noooooooo thats not true.

    it wouldnt be so bad if i could get appts right away. its the waiting that sucks.
    how can i MAKE them medicate me?
    im feeling like a junkie for asking. they make you feel like a seeker. yeah i guess i am a seeker....seeking to get some relief.
    i have even asked them to inject one of my feet with novacain, at least i could get some relief for a little dont do that.
    and im thinking why am i feeling badly about asking for a medication that i KNOW will help me. whats wrong with these docs?
  12. by   LasVegasRN
    First of all, this is awful for you to go through!

    Second, when I read through your post, it sounds almost exactly like Complex Regional Pain Syndrome, or what used to be called Reflex Sympathetic Dystrophy (RSD). Most doctors cringe with that diagnosis, but mostly because it is incredibly difficult to treat and requires a great deal of knowledge and understanding of the disease process.

    The good thing is, it is treatable. The challenge is finding a physician who KNOWS how to treat it. Unfortunately, in the past, RSD was used as a "wastebasket" term for physicians with patients whom they could not figure out what their problem was and thus it got a bad reputation.

    I don't for sure if this is what you have, but it sounds a lot like it. Here's some websites if you are interested in reading more about it:
  13. by   prn nurse
    I don't want to alarm you, but, I was wondering if you have been seen by a neurologist? I read all the posts and was focusing on your symptoms....forgot if one was a neurologist. An auto-immune work-up would be in order.

    Your symptoms sound like lupus. Lupus does all of these things to you. I'd stay on the ibuprofens to decrease inflammation.

    All of the auto-immune myopathies feel like what you are describing. The swelling, discoloration, tingling, twitching , pain...characterizes lupus.

    Hope you are getting a diagnosis and some relief soon.
  14. by   NRSKarenRN
    Poison ------------------>>> to those Docs not being agressive with your pain management!

    Do a search on neuropathic pain treatments and educate your self. Great site run by Harvard.

    Go to Nursing Spectrum B and post to " Mary NP". She is a pain management speicalsit and has been helpful to many posters steering them to Docs and treatment centers/treatment options.
    Did a search under pain mgmt their fo her previous responses---don't know if this link will work as must be a member:

    Will do research and post again.

    ((((((((HUGS))))))))) to get you through the coming days.

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