Discussions By Condition: I cannot get a diagnosis.

mystery joint pain and tingling hands and feet

Posted In: I cannot get a diagnosis. 17 Replies
  • Posted By: simonthedog
  • January 29, 2007
  • 10:58 PM

hi everyone. about six weeks ago i suddenly started to get pain in my hips. it would start in the afternoon and then progressively get worse into the night, but when i went to sleep it would get better and then i would feel fine the next morning. then it slowly started to move to my knees, elbows, shoulders. neck, and back. now my feet hurt as well. i went to my doctor and he did blood tests. he thought that it might be lyme disease( i live in pennsylvania where this is very prevalant). all of my tests came back normal, but i asked if i could take an antibiotic anyway, just in case it was a false negative result for lyme. he agreed, and i have been taking the antibiotic for about 2 weeks now. i have noticed slight improvement. before the antibiotic i was taking 600mg. of ibuprofen 3 times a day and i was still in pain. now if i keep taking the ibuprofen i feel o.k. the past few days i have been experiencing a tingling/ burning sensation in my hands and feet, and sometimes in weird, random spots on my body. i have also been suffering panic attacks and anxiety, which i am not sure is being caused by whatever i have, or is just my own fear getting the best of me. i also feel dizzy from time to time. i have had a few accupuncture treatments. i feel pretty much the same, though. they tested for rheumatoid factors, cbc, lyme, electrolyte levels, and a few other things. my doctor doesn't think it could be lupus. i am so frustrated and nervous. if anyone has any suggestions, i'd really appreciate it. thanks!
olga

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17 Replies:

  • Check for fibromyalgia. but it doesn't really match with the feeling better in the morning. A neurologist could help you with the burning and tingling or finding the source.
    jackrorabbit 113 Replies
    • January 29, 2007
    • 11:12 PM
    • 0
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  • The hips could be a sacroiliac joint dysfunction. You live in Lyme country many tests give false negatives. Your doc should know this and should treat you on the symptoms any way.....The big tip off is you feel better on antibx....I had been undx'd for 20 yrs, but always felt better after being on Abx for something else. I had the traveling pains and all tests we clear...So I know how frustrated you are. They are now finding Lyme is the biggest factor in things like Ms and lupus. Get checked for magnasium and potassium levels too, cause Lyme will leach them out of your body. Also check thyroid, if you have had undx'd Lyme for a long time it acn affect that too. Good luck.
    Anonymous 42,789 Replies
    • January 31, 2007
    • 06:51 AM
    • 0
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  • thanks for responding. i will mention all of your recommendations to my doctor. olga
    simonthedog 2 Replies
    • February 1, 2007
    • 10:59 PM
    • 0
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  • i have the same exact thing except the hip thing, but everything else is the same. i woudl love to know what it is, my dr first said pulkled muscles, because it was only in my left arm and then it was in the right, so she said i have tendintits or carpatunnel...its so frusterating, its in my feet to the tingling and i dont know what to do. if you find out anything please get back to me at my e-mail please!!! brandimaxwell@gmail.comhope this gets better for you!!
    Anonymous 42,789 Replies Flag this Response
  • Maybe celiac disease. http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/
    aquila 1,263 Replies Flag this Response
  • Have your B12 level tested as deficiency can cause these symptoms and exacerbate them if the cause is elsewhere. It should be at least 400. If not, look for a methylcobalamin B12 supplement in whatever dose your doctor recommends.
    dizzy lizzie 192 Replies Flag this Response
  • I have the same exact pain and I am very worried. All my tests came back negative. The hip thing you described is to a T for me. I have the same issues. I have good and bad days. Today isn't terrible but now my eyes are beginning to behave strangley. They are in so much pain and are very sensitive to light all of a sudden. I am curious to know how you are since your first post so I can maybe determine what I should do next. Send me an email at mary.clark@maine.edu.Thank you!
    Anonymous 42,789 Replies
    • December 19, 2008
    • 03:33 PM
    • 0
    Flag this Response
  • Hello there,SI Joint pain is so terrible. What do you know about SI Joint treatment. Here are some information I would like to share with you sacroiliac joint treatment.
    leehanna 1 Replies
    • December 4, 2009
    • 01:04 AM
    • 0
    Flag this Response
  • I have very similar symptoms. First Lyme test (before tingling, 8 months ago) came back negative. Doctor said I was "getting old" and not exercising enough (desk job). I am 41. It's not going away. I saw a physical therapist who confirmed immobility in my hips, cited lack of exercise, prescribed stretching and strengthening. When I do the exercises I feel better, but the achiness still comes back once in a while. It comes and goes. And now the tingling in hands and feet comes and goes. And some random tingling in other places of my body. Some days not so bad, today really achy. Also didn't get a lot of sleep last night. So I'm stuck...is it me not taking care of myself (lack of sleep and exercise, too much stress) or do I have Lymes or something else. I'm sick of it. So I went to different doctor. Drew blood for another, better Lymes test and thyroid test (my thyroid was swollen a few months ago when the tingling started). I'm hoping the test comes back positive so I know what's going on, though the doctor said she'd prescribe the antibiotics whether or not it comes back positive. Tests come back next week. I will also re-commit myself to stretching and exercise. I am otherwise a very healthy eater and in good physical shape. Sometimes I blame the bed. The bed and the completely unnatural desk job. I'll be *****d if it's Lymes, especially if the government created it for biological warfare, as rumored. (Thanks, guys.) Regardless I can't wait to figure out what it is. Good to know there are others feeling the same things and that I'm not imagining all of this. (I live in SW Wisconsin, btw, where Lymes Disease is fairly common.)
    Anonymous 42,789 Replies Flag this Response
  • Just cofirmed: Lymes. Test came back "technically negative," because in order to be considered positive for "chronic lyme's" you need to have "5 of 10 bands" on the IGG blood test. I scored only 1 of 10 bands, but the 1 band I did get is "lyme's specific" according to our doctors here in Viroqua. Also on the "acute lyme's" test, where the technically positive" score is "2 of 3" bands, I scored "1 of 3" but again the one band I did have is "lyme's specific." Plus I have the creepy symptoms, so they prescribed me 100 mg Doxyciclene or something like that, 2x daily, for 30 days. I'm also taking an herbal supplement called Zyflamend (anti-inflamatory). Really happy to get this diagnosis, as I am an otherwise really healthy guy and was concerned that it might be MS or something terrible. From what I understand, a person can live with Lyme's...it might relapse once in a while, but if you stay on the herbal supplements and take care of your body and your overall health, it's not like it's a death sentence or anything.
    Anonymous 42,789 Replies Flag this Response
  • Do you feel tired as well? I have very similar symptoms and have been diagnosed with CFS cause by EB Virus. hi everyone. about six weeks ago i suddenly started to get pain in my hips. it would start in the afternoon and then progressively get worse into the night, but when i went to sleep it would get better and then i would feel fine the next morning. then it slowly started to move to my knees, elbows, shoulders. neck, and back. now my feet hurt as well. i went to my doctor and he did blood tests. he thought that it might be lyme disease( i live in pennsylvania where this is very prevalant). all of my tests came back normal, but i asked if i could take an antibiotic anyway, just in case it was a false negative result for lyme. he agreed, and i have been taking the antibiotic for about 2 weeks now. i have noticed slight improvement. before the antibiotic i was taking 600mg. of ibuprofen 3 times a day and i was still in pain. now if i keep taking the ibuprofen i feel o.k. the past few days i have been experiencing a tingling/ burning sensation in my hands and feet, and sometimes in weird, random spots on my body. i have also been suffering panic attacks and anxiety, which i am not sure is being caused by whatever i have, or is just my own fear getting the best of me. i also feel dizzy from time to time. i have had a few accupuncture treatments. i feel pretty much the same, though. they tested for rheumatoid factors, cbc, lyme, electrolyte levels, and a few other things. my doctor doesn't think it could be lupus. i am so frustrated and nervous. if anyone has any suggestions, i'd really appreciate it. thanks!olga
    AndreZero 8 Replies Flag this Response
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  • I SO don't want to be here. Thank you for your patience with reading all this:Very sudden onset of: hand and feet swelling, roaming stinging pain in fingers and toes and aching in many joints, bilateral. Weight gain has been 5 lbs a week in July. Random muscle aches, Knees don't want to climb steps and I'm having infrequent short dizzy spells.Lasix no result, now on another water pill, no result. Mornings good, by end of day at desk job I'm ready to cry from the pain in hands and feet and yes, i have my feet propped up under my desk.Got demoted at job due to poor job performance, this was occasioned by poor short term memory. I've seen this happening for a year. I'm surprised my boss took so long....Thinning hair over last year could be due to menopause. Oddly had no other symptoms of menopause other than cessation of menses.Dr said blood came back normal: Lyme, Thyroid, hiv, hep, syph, kidney function, gout.liver levels a little elevated which for me is normal.Cat scan of lungs and abdomen show no changes from last one a year ago (chronic kidney stones). I have low potassium for a few years.Dr wants me to go to Rheumotologist, that's a path I'd rather save for last ditch effort. They are difficult to get to see and I'm in PAIN. I don't want to wait until September when one feels like seeing me. I do NOT want to hear fybromyalgia, I am NOT going to do the "pain Management" crap, I've yet to meet one person for whom "pain Management" programs were successful.WEb MD points to gout (Dr says test says no), chronic lyme (Dr doesn't believe in it) or hypothyroidism (Dr says thyroid tests came back normal)me came back negative.Is there a blood test with a definitive answer for chronic lyme which is accepted by the "conservative" medical industry? I'm confused between the advocates talking about conspiracy theories and the seemingly unbiased professionals finding no cause for belief of Chronic Lyme.who do you even go to when you don't know what's wrong?
    Anonymous 42,789 Replies Flag this Response
  • hi everyone. about six weeks ago i suddenly started to get pain in my hips. it would start in the afternoon and then progressively get worse into the night, but when i went to sleep it etc...agreed, and i have been taking the antibiotic for about 2 weeks now. levels, and a few other things. my doctor doesn't think it could be lupus. i am so frustrated and nervous. if anyone has any suggestions, i'd really appreciate it. thanks!olgaI think you need to consider this:there is ample testimonies on line about arthritis/fybromyalgia/MS type symptoms from those people who have made Sucralose /Splenda a staple in their diet. I know Aspartame ( mostly found in gum, diet sodas, those flavor packs from Ocean Spray and Crystal Light) is also a terrible food giving people a really bad time ( seizures, strokes, death). I think you need to start reading your food labels and perhaps find a farm fresh delivery service so you don't have to go through what I have been forced to do when shopping at the grocery store- spend HOURS gleening what foods do not have sucralose and aspartame and finally reducing my take home products to the fresh and dairy ( not including aspartame or sucralose laced yogurts) These artificial sweeteners are no longer only found in DIET foods- they have infiltrated into the sugar foods because it has become a known fact that sucralose is VERY addictive ( as is Aspartame) so now sucralose is in just about everything- many times it is NOT on the front label. The testimonies are out there if you google and while you are at it- google Dr. Louis something or other and congressional hearing and Oren Hatch! There you will see how after THREE congressional hearings where the medical community has disputed putting aspartame in the public reach is negligent- it causes such SEVERE side effects ( read Splenda:Is It Safe or Not? by HAZ MAT engineer and chemist JS Hull- who sites case histories for both aspartame and sucralose! as well as why and how they make people sick. ) Avoiding these products is becoming more and more difficult- Hawaii, NM, wants to ban it and Japan has banned it but strangely enough a Japanese company Ajinomoto has over 40% of the stock in Aspartame ( previously the patent before expiring was owned by Monsanto! not surprising- please do not buy anything they sell ( round up,etc...) they are a real menace! GMO kings! This is how/why they got on the market- Monsanto paves it path with $$$.Sucralose is owned by Johnson and Johnson who coats their pills in Sucralose- and why not? It is a sweetener and they own it! It is a pain product and they sell pain relievers! Not a bad business! Stay away from these products! They are a known poison- why we cannot rid them from our foods is beyond me! But we have "purchasing" power and if we abstain then they cannot continue to hurt and maim people. Just google them and stay away from business sites ( for they are affiliates- go with personal testimonies! there are hundreds! and the sad part is that they "discovered" their culprits so late in their lives- after 5+ years after the damage has been done-)Sucralose- shrinks the thyroid and spleen by 45% and causes calcification of the kidneys and damages the liver. Can give migraines, brain fog, joint pain, depression, weight gain, under left rib nagging pain like a fist in there, rashes, welts, inflammation, dizziness, just see the videos 2 and 3 of "Sucralose Chlorine: A Comparison" for symptoms and testimonies found on line!
    founddog 188 Replies Flag this Response
  • I think you need to consider this:there is ample testimonies on line about arthritis/fybromyalgia/MS type symptoms from those people who have made Sucralose /Splenda a staple in their diet. I know Aspartame ( mostly found in gum, diet sodas, those flavor packs from Ocean Spray and Crystal Light) is also a terrible food giving people a really bad time ( seizures, strokes, death). I think you need to start reading your food labels and perhaps find a farm fresh delivery service so you don't have to go through what I have been forced to do when shopping at the grocery store- spend HOURS gleening what foods do not have sucralos etc...just see the videos 2 and 3 of "Sucralose Chlorine: A Comparison" for symptoms and testimonies found on line!ALso another poison is Gardasil! the HPV vaccine- that has left 15,000+ dissatisfied and full of rheumatoid, reactive and juvenile arthritis! Merck itself has claimed it on their product information sheet as possible side effects- 80+ have died. How this remains on the market is "another mystery". I know it is a big money maker though- like the "diet" sugar industry! BTW- sweet n low has never been proven to cause cancer- and other alternative sweeteners for those diabetics are agave- delicious and stevia! both can be found on line if your grocery store does not have it. If you have taken Gardasil and have not been yourself since locate on line Yahoo groups truthaboutgardasil and letstalkaboutgardasil
    founddog 188 Replies Flag this Response
  • I started off eight years ago , with all of the same pains all of you are suffering , they have ran every test in the book on me , ive even been an inpatient for chronic pain as you will be known as now , stayed for over a month to try alternitive meds to avoid taking opiods .. no joy !! the pain got so bad , by my 2nd year , i could hardly walk , hold anything and just cry in aggony , eventually i gave in and am on morphene and hydrocodone , still though am seeing anyone and everyone who might just find out what this is , i hope that none of you have the same pain as i do , if you do , be prepared its gonna get worse , the doctors get fed up trying to diagnose you and push you to the side , don't let them , keep fighting as i am to find out whats wrong with me , and i will find out !! if anyone wants to email me for more info my email is young.jean15@yahoo.com and dont let them just push you away with fibromyalga , they try that one on every patient with pain , numbness ect , you need to have i think 12 pain areas to even pass the mabey you have fibromyalga ... good luck !!!
    jeaninpain 1 Replies
    • August 20, 2010
    • 05:46 AM
    • 0
    Flag this Response
  • hi everyone. about six weeks ago i suddenly started to get pain in my hips. it would start in the afternoon and then progressively get worse into the night, but when i went to sleep it would get better and then i would feel fine the next morning. then it slowly started to move to my knees, elbows, shoulders. neck, and back. now my feet hurt as well. i went to my doctor and he did blood tests. he thought that it might be lyme disease( i live in pennsylvania where this is very prevalant). all of my tests came back normal, but i asked if i could take an antibiotic anyway, just in case it was a false negative result for lyme. he agreed, and i have been taking the antibiotic for about 2 weeks now. i have noticed slight improvement. before the antibiotic i was taking 600mg. of ibuprofen 3 times a day and i was still in pain. now if i keep taking the ibuprofen i feel o.k. the past few days i have been experiencing a tingling/ burning sensation in my hands and feet, and sometimes in weird, random spots on my body. i have also been suffering panic attacks and anxiety, which i am not sure is being caused by whatever i have, or is just my own fear getting the best of me. i also feel dizzy from time to time. i have had a few accupuncture treatments. i feel pretty much the same, though. they tested for rheumatoid factors, cbc, lyme, electrolyte levels, and a few other things. my doctor doesn't think it could be lupus. i am so frustrated and nervous. if anyone has any suggestions, i'd really appreciate it. thanks!olgaHave your doctor look at parathyroid disease, a serum calcium and a PTH.
    Anonymous 42,789 Replies
    • November 21, 2010
    • 03:43 AM
    • 0
    Flag this Response
  • This sounds very similar to what I'm feeling with exceptions. About a month ago I went to bed feeling fine, woke up got out of bed kinda sore no biggie. but everyday it gets worse, now my knees feel like bone rubbing bone and have to walk stiff legged and very slow,My hands, fingers,palms,shoulder,wrists knees ankles toes feet bottom of feet, neck a little stiff, and a locking of hip from time to time. The tingling is mostly in my left foot. I went to the Dr. and he blood work all where clean, but he gave me arthritis meds anyways, it did nothing so I went back in more pain so he ordered a chest x-ray for cancer came back clean.Ran more blood work came back clean, and put me on nerve, pain, and inflammatory meds, no improvement. The really bad thing about this is I'm a cook And have walk Before all this I was quick they like my performance, But know they have me working 2 days a week, and scared I'm going to lose my job because I cannot move fast anymore. So I'm lost,
    Anonymous 42,789 Replies
    • October 22, 2011
    • 10:31 AM
    • 0
    Flag this Response
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