Discussions By Condition: I cannot get a diagnosis.

Chronic body pain (almost debilitating) ... 1 year, no diagnosis

Posted In: I cannot get a diagnosis. 6 Replies
  • Posted By: undiagnosedpain
  • September 1, 2009
  • 05:14 PM

Hello, I am currently at wits end with this and not sure where to turn at this point. A year ago I woke with a sore throat that in 2 days, got so bad I ended up in the ER with an antibiotic IV to address the swelling before I could no longer breath. within a day or so I begun having pain in my hands and feet. The pain was difficult to explain but it was almost like a very herd pressure, like my hands would explode from the inside out. Along with this symptom, I had a spot on the back of my neck that was ice cold all the time. If I take a shower, the cold spot begins to hurt real bad and I feel this "blanket" of pain begin to wrap around my head. It has been 1 year and I still have found no answers, only the doctors at the clinic telling me I am officially a mystery and from here on out it will be a needle in a haystack search to find out what is wrong. They put me on Gabapentin for neurological pain but since I have had memory loss, swollen legs and arms, dizzy spells, slight blackout feelings and I gained nearly 40lbs! I now have stopped taken the meds for close to a month. Everyday I feel as tho I may not make it to the next. I am going to have to choose a different medication. Pregabalin (Lyrica) or Nortriptyline .... has anyone taken either of these and do they work to help the pain?
Thanks to the failed automotive industry I am no longer employed and cannot afford the Lyrica as it is about $200 to $300 per month! (ouch) Now with no pain medication I fear I may never be myself again. If anyone has experienced anything like this, I would love to hear your feedback. Will this go away? Does the Neurologic meds mess up your body over long term use? How do you deal with the pain day in and day out?
Thank you for reading, any feed back would be greatly appreciated. If you would like to read my entire "story" I have a website which tells the whole thing. web address is undiagnosedpain
Thank you,
RBest

Reply Flag this Discussion

6 Replies:

  • Hello, I am currently at wits end with this and not sure where to turn at this point. A year ago I woke with a sore throat that in 2 days, got so bad I ended up in the ER with an antibiotic IV to address the swelling before I could no longer breath. within a day or so I begun having pain in my hands and feet. The pain was difficult to explain but it was almost like a very herd pressure, like my hands would explode from the inside out. Along with this symptom, I had a spot on the back of my neck that was ice cold all the time. If I take a shower, the cold spot begins to hurt real bad and I feel this "blanket" of pain begin to wrap around my head. It has been 1 year and I still have found no answers, only the doctors at the clinic telling me I am officially a mystery and from here on out it will be a needle in a haystack search to find out what is wrong. They put me on Gabapentin for neurological pain but since I have had memory loss, swollen legs and arms, dizzy spells, slight blackout feelings and I gained nearly 40lbs! I now have stopped taken the meds for close to a month. Everyday I feel as tho I may not make it to the next. I am going to have to choose a different medication. Pregabalin (Lyrica) or Nortriptyline .... has anyone taken either of these and do they work to help the pain? Thanks to the failed automotive industry I am no longer employed and cannot afford the Lyrica as it is about $200 to $300 per month! (ouch) Now with no pain medication I fear I may never be myself again. If anyone has experienced anything like this, I would love to hear your feedback. Will this go away? Does the Neurologic meds mess up your body over long term use? How do you deal with the pain day in and day out? Thank you for reading, any feed back would be greatly appreciated. If you would like to read my entire "story" I have a website which tells the whole thing. web address is undiagnosedpainThank you, RBestI just realized I have not done a very good job of explaining the symptoms or things I have had checked, so here are a list of them:Extreme fatigue & weakness - I am 37 and need to use a cane at times to move on my bad days.Hands, Arms, Legs, Feet, neck and head all are painful - A deep seeded pain as though is comes from deep within my bones and radiates out towards the surface of the skin.Sensitivity to temperatures - If I wash dishes in hot or cold (it does not matter which) my hands will burn something awful for hours. Showers, dishes, bath, cool air from fan, outside temperatures...all has severe impact on my body.Burning at night - My hands and Feet get soooo hot it feels like they are buried in hot coals of a fire.Memory Loss at times - Could be medication?dizzy spells - Also could be the medication?Muscles are sore "ALL THE TIME" - it is as though I have run a marathon without preparing for it and waking the next morning in agony. I feel like this all the time.Tests that I have had done include all kinds of blood tests....so many I cannot possible list them all. It seems that is all these doctors here want to do first. They have check for "all" common life threatening diseases including Lyme and auto immune diseases. I have been seen by my GP, Rheumatologist both of which did a battery of blood test for the first 4 months of my issues until they gave up. I was then sent to a Neurologist who had me go through a MRI, EMG and a Needle EMG to verify that it was not a motor funtion issue. Prior to being laid off, they were treating it as though it is a form of Neuropathy.
    undiagnosedpain 5 Replies
    • September 1, 2009
    • 07:06 PM
    • 0
    Flag this Response
  • Are you still having signs of infection? Did they test your Vitamin D3 status? You also might want to look at Dr. Stanley Jacob research on DMSO and pain (Youtube has the 60 Minute interview with him).Do you do any nutritional things such as Vitamin B12/folic acid or magnesium?
    LINENUP 122 Replies
    • September 2, 2009
    • 03:17 AM
    • 0
    Flag this Response
  • Have you ever been tested for "fibromyalgia" ?They say it's an "Everything Hurts" condition . Might be worth while researching ? Not a diagnosis but may help you with treatment optionsI hope you find the answersxxxSamanthahttp://www.undiagnosedillness.org
    Anonymous 42789 Replies
    • September 2, 2009
    • 07:29 AM
    • 0
    Flag this Response
  • Are you still having signs of infection? Did they test your Vitamin D3 status? You also might want to look at Dr. Stanley Jacob research on DMSO and pain (Youtube has the 60 Minute interview with him).Do you do any nutritional things such as Vitamin B12/folic acid or magnesium?Actually the infection was gone within a weeks of having to go to the ER. It has now been over a year with the pain problems. I have been tested periodically (I think 4 separate times) with full panel. They test all key vitamin deficiencies and Kidney functions. Everything has been "perfect" each time with exception of the first kidney function test. I had one item which was border but it returned to normal shortly after the infection was gone. Thank you for your feedback, I will certainly look up the interview you mentioned here.Thank you! :o
    undiagnosedpain 5 Replies
    • September 2, 2009
    • 02:50 PM
    • 0
    Flag this Response
  • Have you ever been tested for "fibromyalgia" ?They say it's an "Everything Hurts" condition . Might be worth while researching ? Not a diagnosis but may help you with treatment optionsI hope you find the answersxxxSamanthahttp://www.undiagnosedillness.orgHello Samantha!The needle EMG (motor function test) was done to verify whether or not I had some form of Myalgia. That is where the Neurologist went after my initial consultation with him. Unfortunately these test come back fine as well. I was seen by the top 4 resident Neurologists at the clinic. On my last visit the senior N came in and told me they have now 3 people like me and have no idea where to begin. I was officialy a medical mystery to them for now. He said it could take years becasue all obvious things have been tested...it's a "needle in a haystack" was his words. He did tell me they felt it was a type of neuropathy caused by my nerve endings being damaged or dieing. They would need confirming tests to verify but as of my last visit, I no longer have medical insurance so my life is on "hold" I suppose. Thank you so much for your reply; I have in fact seen your website and would love to chat with you. :)again, thank you!
    undiagnosedpain 5 Replies
    • September 2, 2009
    • 03:03 PM
    • 0
    Flag this Response
  • Have you ever been tested for "fibromyalgia" ?They say it's an "Everything Hurts" condition . Might be worth while researching ? Not a diagnosis but may help you with treatment optionsI hope you find the answersxxxSamanthahttp://www.undiagnosedillness.orgHi Samantha, I am not sure what happened to my first reply post :confused: it seems it was never placed so far so I am re-replying. I am relatively new to forums so perhaps I said something they didn't like? I had the Needle EMG done to verify whether or not this is a form of Myalgia or not. The Neurologist tells me it is not myalgia but most likely some form of Neuropathy where the nerves are damaged & or dieing. The big question is why? Since I no longer have medical coverage, I will be putting my search for a cure on hold and hope I can find a medication that will allow me to deal with the pain on a day to day basis. Thank you so much for your response, please feel free to contact me anytime; I would love to chat more with you. It seems our personal sites are similiar. :)Thank you!RBest
    undiagnosedpain 5 Replies
    • September 2, 2009
    • 04:13 PM
    • 0
    Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.