I have an unexplained disease in my feet for 4 years

Posted , 5 users are following.

Back in 2013, I started having foot problems, I'm Diabetic and I'm old so at first it was thought to be water weight or have something to do with Neuropathy. At this point, I have been tested for everything from Lupus to Cancer- and the Doctors say I'm a Medical Mystery. Currently, I have to take 4 pain pills at night, only to get just a few hours of rest, and I have to frequently put my feet up.The pain changes constantly, and it has intensified Also to add, when I put my feet up, I frequently deal with (Usually my right leg) my leg heating up, just the lower leg. It's almost always the right. It's unbearable. I have to put it up often because of the pain, and then I deal with the leg issue. I avoid appointments as much as possible, because the pain is so bad, and by the time I get home the swelling does not go down for hours, also, I am unable to drive anymore because of it. I can't win for losing, and the pain is inexplicably horrible.

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15 Replies

  • Posted

    Hi LucyBallsy

    You do not mention whst tests you have had..

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    • Posted

      Where does it, start and where does it end? I, as I said, have been tested for every single thing that the Doctors could think of testing me for, and then some. Two many to remember, too many to name.
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    • Posted

      I'll try to answer your question as best I can though. (And  I also tried Lyrica, and Gavi Penton-which, of course, did nothing) Let's see. Water weight,  cellulitis, cancer, lupus, varicose veins,  X-rays, Mri, vascular veins, urinalysis, liver, and kidney function, ECG, congestive heart failure... And that's just SOME of the tests that I can remember. I also was admitted to the hospital because they thought maybe I had an undiagnosed infection. So, I stayed there for 2 days, where  they did further testing (I don't remember what it was called, but they did an ultrasound on the inside of my thighs), had me on strong antibiotics, took a biopsy on my foot and leg- which incidentally didn't heal for months and months, and they sent me home, with no conclusion. Currently, I have again developed a blister/ boil on my left foot, which always seems to be the prominent one, and have had to constantly put it up, and it is extremely uncomfortable because my leg heats up- no matter what I do. I have searched and searched for answers, which is why I posted on here. I feel this thing- this infection, disease, whatever it is, will be what kills me. Also, I have developed chills that accompany the pain.  

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  • Posted

    You are facing so much and I am so sorry you are in such a horrible situation. I would like to suggest that you look into side effects of medications you are taking. The Mayo Clinic has sites that will suggest possible illnesses that match your symptoms. If you are on statins for choltesterol management they are very big offenders for the pain you describe. Even blood pressure medicine can cause some of the symptoms you describe. LucyB I am so sad for you. I know what it is like to be in so much pain also have nerve damage and pheriphial neuropathy. I too have painsomnia and the lack of sleep really takes a toll on the body and spirit. I am also an old duck and this passage is a big challenge! I send my best wishes and will be thinking of you often. 🍀💐🕊

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    • Posted

      Thank you for your kind words, I really feel for you as well. Chronic Pain, is indescribable, isn't it? I've gone to the pain clinic as well. I take OxyCodone (5 mils. twice a day)

      And Tylenol 3 (300 mills. twice daily)

      They generally take between 05 mins.- 5 hours to kick in. It initially puts me to sleep but I only get a few hours rest. I have tried everything- this remedy is the only one that helps somewhat. Again, Thank You.

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    • Posted

      I was just wondering, how you are?  You never mentioned what you're dealing with, but, I'm guessing it's bad, bad enough to be on here, right? It can be depressing, especially when there are no clear answers. I never imagined I would end up like this. I try to keep my head up, but the pain is so horrid, it's easier than done. I wish you peace and sleep. You take care and keep in touch.

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    • Posted

      Hi LB, thank you for thinking of me. I am coming off a flair-up due to cleaning up a carpet mishap, a full steaming up of coffee on our white rug.  Took three days to get it out and the activity just messed up my damaged nerves. Wow what a nightmare. Gosh, I sure miss my normal self. Sooooo, about six weeks later I am getting relief. This new normal takes much adjustment! I give much credit to my husband who takes such good care of me. I have a new term that sorta describes this situation. Broken and can't get fixed!! Well girl, I sure hope you are getting some peaceful moments, they are so precious. 🍀🦋🌷🕊🌈

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  • Posted

    As someone else mentioned my first thought was neuropathy. But without knowing what tests were done it's hard to say. Have they done X-Ray, MRI, anything else?

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    • Posted

      Hi. Thank you for asking. To answer your question, yes. They have X-Rayed MRI, tests upon tests. As I said. I have seen over 17 doctors since this first began, and what I would give to at least know what this is.
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  • Posted

    One more thing. If any of you, have an idea, about what I can be tested for, please, put it out there. I am so tired of the pain. Thanks so much for even taking the time to respond.
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    • Posted

      Hi LucyBallsy

      Have you pain anywhere else...and have you had an ESR test, CRP test ANA test for inflammation.....also have you been tested for vitamin deficiency...all vitamins including B12 vits...if vitamins are deficient in our body it can cause adverse effects....these suggestions are a long shot that may reach the target of what is causing your awful pain...my very best wishes to you ..i do hope you can get to the bottom of this awful condition..x

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    • Posted

      Hi. Thanks for your response.To answer your questions- yes the pain has moved from my feet into my ankles and legs. And to answer the rest of your questions, yes, as well. I have seen at least 17 Doctors, they have tested me, for everything under the sun, until they had nothing more to test me for at all, they are keeping me medicated (at least at night, because they're more worried about addiction, then if I need pain relief) Now I'm just existing, I don't call this life. My days are spent with my feet up, all day, all night, in between bathroom breaks. I have to wait all day to take my pain pills, and they don't even work as well as I wish they would. I can't even walk on them without pain. 

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    • Posted

      Have your blood sugar tested and also antibodies to see if you carry the diabetic gene but have no gotten it yet, stay away from sugar & processed foods. Go to the neuropathy.org site as they have the most information on neuropathy as their are over 100 different types of neuropathy and many people have idiopathic neuropathy which means they have no idea why you have it, I would also get a nerve conductive test ( EMG) that will give you an idea if you have nerve damage which causes severe pain. I ended up at UCSF with two of the best neurologists who spent half a day with me. I have idiopathic neuropathy and small fiber neuropathy. Also check your vit b and vit d. I have found nothing to truly rid me of the pain but narcotics help but I hear the goverment is going to deny all of us unless we r cancer patients to receive this medication which is so unfair. I was in a wheel chair for a year and lost my job because of the pain and nerve damage. I hope you find a great neurologist to help you find out what you have. Just stop the sugar and see of it helps at all even though I am not a diabetic sugar causes flare ups and don't drink any alcohol. Best of luck & hugs as I know how difficult it is. 

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  • Posted

    Hi.LucyBallsy

    I re-read your post and see you have been tested for lupus which would have included ESR, CRP and ANA..but do get your vits and minerals tested if you have not done so....

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    • Posted

      Hello, Lilian. Thanks for your advice. I have had these tests as well. The Doctors tell me, I'm a "Medical Mystery" not my choice of a title at this point, I'll tell ya.

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