Discussions By Condition: I cannot get a diagnosis.

undiagnosed foot and hand pain 2+yrs

Posted In: I cannot get a diagnosis. 31 Replies
  • Posted By: Anonymous
  • February 18, 2007
  • 00:23 AM

I have had foot and hand pain for 2+ years. I cannot do any activity involving my hands or feet for a long periods of time. With increased use comes increased pain and "weakness". The weakness could not be called profound but I get very clumsy and my grip is weakened. On a "good" day I start with little pain and can get through the day running whatever errands I need to get done with only a little pain at the end of the day. On a good day I could probably spend 3 hours walking slowly at the zoo and the pain at the end of the day would be tolerable, I could not do a trip to the zoo in the morning and then run errands in the afternoon. On a "bad" day I start out in pain (hands and feet) and cannot do much during the day, the pain at night interferes with my falling asleep.

The pain cycles in a very consistent episodic way (not tied to menstrual cycle) with the beginning of the cycle being lower pain levels, more stamina. Over 2-3 months the pain gradually increases and peaks with 2-3 weeks of pain that interferes with my daily activties. The pain drops dramatically and fairly suddenly when "good phase" begins again.

I cannot wear any shoes other than hard soled very supportive shoes. I have found Birkenstocks work best for me. If I wear tennis shoes, even with high arch insoles, the pain increases.

I have had sinus issues also since my daughter was born, for which I started taking claritin, not sure if sinus stuff is related.

I have seen an endocrinologist, rheumatologist, podiatrist and neurologist, in addition to my primary care physician.

I am currently taking a low dose of synthroid (tried higher and it didn't help), and Cymbalta (helped with generalized fatigue and mood issues caused by the chronic pain). I was taking birth control but had my tubes tied, I have seen no change in symptoms since I stopped taking birth control. I have found the advil nighttime helps me get to sleep. ibuprofin in my drug of choice to help with the pain. I take GNC multivitamins, calcium, omega complex, aciphillodosis(sp?).

Sleep study revealed PLMD but I think that is more of symptom of what is going on than a cause. I haven't tried drugs for that yet. Nerve conduction study showed no current nerve deterioration. MRI showed small pituitary tumor but all hormone levels are within normal range. I had very slightly elevated ana and cpk but nothing of diagnostic value.

I felt physically miserable during my pregnancies and had major problems with my hips. During my second pregnancy I wore a belt the entire pregnancy to hold my hips together because otherwise they would spread apart making it difficult to walk. I even had to wear it to sleep at night. Not sure if that is related.

ruled out:
thyroid/hormone
lupis/arthritis/polymiositis
charcotmarietooth/ms

Due to the lack of diagnosis my rheumatologist feels that this could be a transient condition that will resolve on its own. Other options: I am showing "non-standard" symptoms for a known condition, or suffering from a more rare condition that I haven't been tested for.

I do feel that my doctors have been thorough. The only area not specifically explored is muscular dystrophy, due to the lack of profound weakness and the cyclical nature of the pain.

Any ideas? I would be happy to provide more information if needed.

Thanks,

Linda

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31 Replies:

  • Hello, I don't see any mention of Lyme disease testing in your post. Its not tested for in the normal blood work.Though sometimes the blood tests aren't always accurate, they also us clinical symptoms too. Lyme goes often undx'd for yrs and causes alot of other things. You sound like many of us Lymies and what we have been through. Here is a link to look into maybe it will help you. www.lymenet.org.
    Anonymous 42789 Replies
    • February 18, 2007
    • 01:43 PM
    • 0
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  • Lyme disease or a coinfection? Read more at lymenet.org or canlyme.com. They have a Q&A forum so please post your questions and you will get a reply. Blood tests rarely show up with anything as the bacteria does not live in the blood stream. Lots of bacterial infections are misdiagosed as MS, ALS, IBS, CFS, Alzheimers, Fibro. Even the best and thorough doctors miss these ones for lots of reasons. Those sites will tell you more.
    Anonymous 42789 Replies
    • February 18, 2007
    • 03:37 PM
    • 0
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  • Thanks. I forgot to mention I also saw an infectious disease specialist who tested for virtually anything he could think of including the advanced lime test. All tests were negative. Anyone heard of muscular dystrophy with pain or is it always weakness without pain?
    Anonymous 42789 Replies
    • February 21, 2007
    • 08:53 PM
    • 0
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  • I also have hand and feet pain as you've described, except I don't have any "good phases". It's very predictable--more I use either hands or feet, more they hurt. I can only use them 1-2 hours a day, before severe pain. Have you had any luck in diagnosis?
    Anonymous 42789 Replies
    • February 5, 2008
    • 00:07 AM
    • 0
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  • I'm sorry you have the pain and no answers. Though your doctors have been thorough, it might not hurt to see another rheumatologist (if it's not Lyme, that is- sounds like you should definitely get checked for Lyme), perhaps one at a teaching facility or who is an expert at hard to crack cases. Again, sorry you have to go through this.Hope you get an answer soon.
    Anonymous 42789 Replies
    • February 5, 2008
    • 08:18 AM
    • 0
    Flag this Response
  • I dont know if any one will read this or can help me. i too, have had for about 5 years now severe foot and hand pain. I have had my feet checked for fractures..no...had all sorts of blood tests...no arthritus etc....been to a foot specialist...said may be spurs in feet but doesnt explain the pain in my hands. The pain is centrally located in the instep of both my feet and sometimes they are so sore I cant bear to have them touched. Then on other occasions when they are rubbed or I apply heat to them my entire body reacts..hard to explain. My hands hurt inbetween my thumb and pointer. I cant seem to soothe the pain as they are in constant use...I am finding it hard to open cans...type continuously (hence have stopped 3 times typing this) and peeling potatoes is a night mare. I havnt tried acupunture..was my next step. Im only 40 and this started 5 years ago..I dont want to sound like a winger...i just want it fixed. Havnt worn high heels for 5 years and i miss them !Any ideas?
    Anonymous 42789 Replies Flag this Response
  • I suggest "super feet" product in shoes at all times and no barefoot-ness, such as for plantar fascitis (sp?) precautions. I have similar syptoms5+yrs but numbness and weakness at this time rather than pain. Wasn't muscular dystrophy, wasn't spinal muscular atropy, wasn't thoracic outlet symdrome, doesn't present as "typical" for anything. Keep moving as muc as possible in increments. Good luck.
    Anonymous 42789 Replies Flag this Response
  • Try vitamin B1 B6 & B12 with your doctor adviceThank youSR
    Anonymous 42789 Replies
    • November 7, 2008
    • 02:19 AM
    • 0
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  • Has celiac disease been ruled out?
    aquila 1263 Replies
    • November 7, 2008
    • 08:40 PM
    • 0
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  • fabry disease can cause this. is a rare but genetic disorder. can be diagnosed by a blood test.
    Anonymous 42789 Replies
    • November 8, 2008
    • 02:54 AM
    • 0
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  • Hi. My name is Shawn and I'm a 47-year-old single mom/artist. I have had some similar issues with pain in my hands and feet, but also have obvious eyelid & facial atrophy and weakness in jaw, neck, chest, shoulders, fingers, wrists, legs, feet (well that just about covers everything). The weakness makes it difficult to walk, and unable to grasp anything tightly, or lift anything heavy. I can no longer arise from a sitting position without pulling myself up. And when I am on my feet for any length of time I get searing pain along the instep and along the top around where the pinky toes are. I also experience this directly above the achilles tendon. I suffer from myotonia (muscles stay rigid after relaxing them), and the suspicion is Myotonic Muscular Dystrophy, as my mother also have myotonia (without dystrophy) and there is a history of a family ancestor with an undiagnosed muscle degeneration issue on Mom's side of the family.I have major troubles in very cold weather - if I shiver, it causes the chest and abdomen muscles to become rigid, which prevents me from getting enough air, until the muscles relax (which occurs only when I become warm again - I use a heating pad a lot these days). I have GERD, and conduction problems in my heart. I had a swallow test which showed loss of muscle at the top of the throat. My voice is chronically hoarse. I also have a ten-year history of "benign fasiculation syndrome" and was told I have fibromyalgia, but I really don't fit the mold for fibro. I have just been diagnosed with scoliosis and I have hammer toes on one foot. I have been diagnosed with a "progressive undiagnosed neuromuscular disease" that my PCP says she thinks is a dystrophy. But she is not a neurologist, so she is sending me to the Oregon Health & Science University hospital for the proper testing. I was treated several times back in the late '80's and early '90s for Lyme disease based on one false-positive test (either the Eliza or Western Blot came back positive while the other one was negative), but I don't believe it was Lyme at all anymore. I believe it was what I'm suffering from now.I thought I would share you in case you want to think in another direction. MMD can really only be found through a DNA test.
    shawniemar 1 Replies
    • December 19, 2008
    • 04:52 AM
    • 0
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  • Two years ago I had very similar symptoms. It was diagnosed as reactive arthritis and eventually went away by itself. However, in the last few days I have started to have pain in my hands and feet again, so it was interesting to read your thread. I'm going back to see my doctor tomorrow and I'm not sure where that will take me.
    Anonymous 42789 Replies
    • February 4, 2009
    • 02:36 AM
    • 0
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  • Ask your doctor to test you for Fabry's Disease. Do you have red spots? GI upset? Decreased sweating? These are other symptoms.
    Anonymous 42789 Replies Flag this Response
  • Fabrys is a good recommendation, although it affects only about 1 in 120,000 people. The questions regarding GI disruption, lack of sweating, fatigue, rashes, and other generalized joint pain are important to the diagnosis, as are blood tests. Fabrys is a lack of a particular enzyme, which allow for deposit to accumulate in various parts of the body causing pain and other symptoms.
    Anonymous 42789 Replies Flag this Response
  • I have had foot and hand pain for 2+ years. I cannot do any activity involving my hands or feet for a long periods of time. With increased use comes increased pain and "weakness". The weakness could not be called profound but I get very clumsy and my grip is weakened. On a "good" day I start with little pain and can get through the day running whatever errands I need to get done with only a little pain at the end of the day. On a good day I could probably spend 3 hours walking slowly at the zoo and the pain at the end of the day would be tolerable, I could not do a trip to the zoo in the morning and then run errands in the afternoon. On a "bad" day I start out in pain (hands and feet) and cannot do much during the day, the pain at night interferes with my falling asleep. The pain cycles in a very consistent episodic way (not tied to menstrual cycle) with the beginning of the cycle being lower pain levels, more stamina. Over 2-3 months the pain gradually increases and peaks with 2-3 weeks of pain that interferes with my daily activties. The pain drops dramatically and fairly suddenly when "good phase" begins again. I cannot wear any shoes other than hard soled very supportive shoes. I have found Birkenstocks work best for me. If I wear tennis shoes, even with high arch insoles, the pain increases. I have had sinus issues also since my daughter was born, for which I started taking claritin, not sure if sinus stuff is related. I have seen an endocrinologist, rheumatologist, podiatrist and neurologist, in addition to my primary care physician. I am currently taking a low dose of synthroid (tried higher and it didn't help), and Cymbalta (helped with generalized fatigue and mood issues caused by the chronic pain). I was taking birth control but had my tubes tied, I have seen no change in symptoms since I stopped taking birth control. I have found the advil nighttime helps me get to sleep. ibuprofin in my drug of choice to help with the pain. I take GNC multivitamins, calcium, omega complex, aciphillodosis(sp?). Sleep study revealed PLMD but I think that is more of symptom of what is going on than a cause. I haven't tried drugs for that yet. Nerve conduction study showed no current nerve deterioration. MRI showed small pituitary tumor but all hormone levels are within normal range. I had very slightly elevated ana and cpk but nothing of diagnostic value. I felt physically miserable during my pregnancies and had major problems with my hips. During my second pregnancy I wore a belt the entire pregnancy to hold my hips together because otherwise they would spread apart making it difficult to walk. I even had to wear it to sleep at night. Not sure if that is related. ruled out:thyroid/hormonelupis/arthritis/polymiositischarcotmarietooth/msDue to the lack of diagnosis my rheumatologist feels that this could be a transient condition that will resolve on its own. Other options: I am showing "non-standard" symptoms for a known condition, or suffering from a more rare condition that I haven't been tested for. I do feel that my doctors have been thorough. The only area not specifically explored is muscular dystrophy, due to the lack of profound weakness and the cyclical nature of the pain. Any ideas? I would be happy to provide more information if needed. Thanks,LindaFibromylgia Is what I have. It is a real condition. Lyrica is the only medicine that works at all. I went throught the cymbalta and advil and also other pain medications. Food alergies are a large problem with this. I found out hat I have a problem with wheat. So alergie meds may help some. Viruses in your body play a role so an anti-viral medication can be of benefit.
    Anonymous 42789 Replies Flag this Response
  • Check Vitamin levels particularly B12. Some times deficiency of vitamins cause these problems
    Anonymous 42789 Replies
    • September 6, 2009
    • 02:54 AM
    • 0
    Flag this Response
  • I dont know if any one will read this or can help me. i too, have had for about 5 years now severe foot and hand pain. I have had my feet checked for fractures..no...had all sorts of blood tests...no arthritus etc....been to a foot specialist...said may be spurs in feet but doesnt explain the pain in my hands. The pain is centrally located in the instep of both my feet and sometimes they are so sore I cant bear to have them touched. Then on other occasions when they are rubbed or I apply heat to them my entire body reacts..hard to explain. My hands hurt inbetween my thumb and pointer. I cant seem to soothe the pain as they are in constant use...I am finding it hard to open cans...type continuously (hence have stopped 3 times typing this) and peeling potatoes is a night mare. I havnt tried acupunture..was my next step. Im only 40 and this started 5 years ago..I dont want to sound like a winger...i just want it fixed. Havnt worn high heels for 5 years and i miss them !Any ideas?I just starting having the same problem about 5 weeks ago. I'll be 40 next April. I can't evenhave a pedicure or manicure. Someone rubbing on them hurt. Even stepping out of my bed in the morning hurts for a while then it gets bettter but, doesn't go away. It hurts to slip my feet in to my sneakers. Not sure whats up? Have you learned anything since you posted this post?
    Anonymous 42789 Replies
    • October 5, 2009
    • 04:51 PM
    • 0
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  • I have had the same foot and hand pain issues for three years. I am beginning to suspect that it is a side effect of the claritin which I have been taking on a long term basis. I'm stopping that to see if I get any relief.
    Anonymous 42789 Replies
    • October 29, 2009
    • 01:14 PM
    • 0
    Flag this Response
  • i have been having the same pains you are talking about, almost to the tee. the pain tends to just come and go with no exact schedual. the only thing is that my pain will come on days that i just sit around and do nothing. i can use my head during the episodes and it not worsen it as well as i can walk while my feet hurt and not even limp. there is no swelling and no color change, just extream pain. the doctors tell me that im am a heathy 22 year old, im in shape and i eat pretty heathy, i just have this pain that is a mystery to any and all doctors i have talked to. i will keep an eye on this post and keep chatting with you. keep us posted on what the docs say and if i find anything out i will be sure to tell you. i hope thing get better
    Anonymous 42789 Replies
    • January 1, 2010
    • 05:17 PM
    • 0
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  • Hi Jodie,Have you found remedy for your problem.My mom is also having the same symptoms like you .She also feeling dizziness these days.Please let me know if you have found remedy this will be very helpful for my mom.Hope you get better soon.Thanks,PalemI dont know if any one will read this or can help me. i too, have had for about 5 years now severe foot and hand pain. I have had my feet checked for fractures..no...had all sorts of blood tests...no arthritus etc....been to a foot specialist...said may be spurs in feet but doesnt explain the pain in my hands. The pain is centrally located in the instep of both my feet and sometimes they are so sore I cant bear to have them touched. Then on other occasions when they are rubbed or I apply heat to them my entire body reacts..hard to explain. My hands hurt inbetween my thumb and pointer. I cant seem to soothe the pain as they are in constant use...I am finding it hard to open cans...type continuously (hence have stopped 3 times typing this) and peeling potatoes is a night mare. I havnt tried acupunture..was my next step. Im only 40 and this started 5 years ago..I dont want to sound like a winger...i just want it fixed. Havnt worn high heels for 5 years and i miss them !Any ideas?
    Anonymous 42789 Replies
    • February 5, 2010
    • 05:42 AM
    • 0
    Flag this Response
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