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  • Peripheral Nueropathy Severe pain?

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    Old 01-11-2014, 12:24 PM   #1
    thefarm
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    Peripheral Nueropathy Severe pain?

    I've had problems for so long but will keep this simple...

    I had problems as a child growing up, unexplained headaches, nausea, fatigue. But it came & went.
    I had the breath knocked out of me 3 times as a child. One of the times I had bad upper back, shoulder, neck & chest pain the lasted a few months. Then about 6 yrs ago I wrecked a quad. I bounced my head off the ground & remember thinking thank goodness I'm wearing a helmet. For the next hour my boyfriend (now husband) drove us home. I didn't know Who he was, who the people were that were with us (my parents), if I had medical, if I had kids ect. After atleast an hour & almost home thinks started coming back to me. I didn't have insurance so refused seeing a doctor. I was beat up pretty bad too.
    I did have a back injury 8 yrs ago at work & being the good employee I went on light duty & didn't get it checked out till 2 weeks later when I was losing my job anyways.
    4 yrs ago I was Diagnosed with degenerative disk, arthritis & mild scoliosis which I already knew. 4 yrs ago I had my 3rd child. I couldn't recoup. Never recovered. Back pain I'd managed for yrs got worst. Then neck pain started. Full body pain. I always hurt sooo bad. Also severe fatigue among many other symptoms. I was diagnosed with fibromyalgia. But my pain never goes away, I never have good days just better days. I get severe headaches. My neck pain always the worst. Deep achy burning. At its worst it's like having a toothache in my neck that goes into the back of my skull & into my lower jaw. The pain sooo uncomfortable. Luckily my pain meds do help & I always know it'll get better. I couldn't live like this if it didn't... Anyhow, I have to lay my head down most of the time or pain is worst or I get headaches which are horrible. Vomiting has been so bad that it got to be where I was sick easily 5 days a week. When I get sick nothing stays down, I get so dehydrated. I've been on Propranolol which had helped so much! My previous doctor thinks it was migraines but she retired & now my new primary says it's just fibro headaches. But bone of this is normal! I've seen numerous doctors & tested for everything. I had a MRI about 2 yrs ago with no lesions. My long term Rhumetologist is worthless so I'm seeing a new one. She thinks that fibro ranges from mild to severe & I'm just on the severe side.
    Also, activity makes pain & fatigue worst. Even just 2 mins of exercise. It doesn't take much of anything & I've over done it. Pushing through makes me worst. I always have to rest which takes days or even weeks to recover alittle. Stress like arguing with my husband will cause pain & fatigue to get unbearable & sometimes make me so sick. If it weren't for the propranolol I'd always be sick. I never eat much but still overweight so I don't think doctors take me serious enough. I can throw up all day & still look healthy with color to my face & everything.
    Numbness I have I think is from neuropathy. My joints swell, swollen glands, dry mouth & eyes, head pressure, ect.
    I had an MRI a couple yrs ago, nothing showed except a nasal polyp I guess.
    I don't know what's wrong with me. I don't deny fibro or neuropathy but I feel there is something else going on...
    I'm supposed to get an MRI of my neck. I had an xray last year which showed nothing. I have been wanting an MRI of my neck so I agree with it.
    Sorry so long!
    My point... I found out last year I have Nueropothy. I had a nerve conjunction test about 3 yrs ago & he never told me. My husbands uncle have neuropathy & he explained that what I thought were muscle twitches & jumping are actually my nerves. Also that the nerve pain I get, shooting pain is also the neuropathy along with the burning feeling I get in my bones. Prob more problems I have but with so many issues...
    Could Nueropathy cause the severe deep neck pain I always have? Could it cause migrain like headaches, vomiting, ect? I have so much muscle & joint pain also, does it contribute to that?
    I brought up the Nueropathy with my new Rhum but we were more focused on the whole picture & didn't want to tackle Nueropathy I guess...
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    ~♥Tori♥~
    Fatigue & Derealization~ 1999
    Hypothyroid~ 2003
    Back injury~ 2005
    Severe Degenerative Disk, Arthritis, Mild Scoliosis.
    Fibromyalgia~ 2009
    Neuropathy

     
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    Old 01-23-2014, 08:04 AM   #2
    Mariner403
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    Re: Peripheral Nueropathy Severe pain?

    Hi there, Tori :-)

    I suppose it's possible you might think the folks here are indifferent to your plight because of the lack of responses, but I doubt that's the case. For instance, I haven't responded because your history and symptomology are so complex as to defy any attempt by us laymen to do other than deeply sympathize.

    But in an attempt to answer your question as a non-professional, I can only say from my readings of this and other discussion boards, as well as extensive independent research, neuropathy can cause just about every symptom under the sun, particularly if it's comingled with other disorders. For instance, my neurologist -who diagnosed me with axonal neuropathy- sent me in for a DaTscan test last week, the purpose of which was to explore the possibility of Parkinson's. I researched that, and found to my dismay that neuropathy can be a *side effect* of Parkinson's!

    And here I'd thought that neuropathy was a thing unto itself, usually caused by some underlying disorder. But to see it characterized as a "mere" side effect of something even more dreadful??

    All of which is to say that disorders of the nervous system can be so complex and overlapping as to defy a specific diagnosis even by specialists applying every test imaginable, so please don't take the silence of your friends here as indifference. It's not.

    Good luck and God bless.

     
    Old 01-23-2014, 10:08 AM   #3
    thefarm
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    Re: Peripheral Nueropathy Severe pain?

    Thank You for your message
    I understand. I know my issues are complex. I think that's why doctors can't seem to understand what's going on...
    I'm supposed to go back to my primary & have him request a MRI on my neck. I've had on on my head & back & an X-ray on my neck. I have had allot of injuries in that area so I am looking forward to seeing if they find anything. Not looking forward to the bill. Luckily I have insurance but it was $600 out of pocket last time.
    Have you had many mri's? I'm thinking about requesting one on my head again but not if it will cost allot more...
    I agree, nueropathy does seem to be a symptom of something else. I believe that something else is causing my Nueropathy, fibro, migraines, derealization, ect. I have wanted to see a Lyme Litterate dr & get more theral blood work done. But can't afford it. I am as always looking for more answers. My new Rhumetologist thinks I just have a severe form of Fibro & I just need to accept it.
    Have you got your results back for parkinsons? Sounds like something is going on that is causing concerns? If it comes back negative I hope you'll push for more tests... I'm not sure how drs are there but here they don't seem to want to invest in finding you help. They tend to grab the first excuse they can find & write a prescription...
    __________________
    ~♥Tori♥~
    Fatigue & Derealization~ 1999
    Hypothyroid~ 2003
    Back injury~ 2005
    Severe Degenerative Disk, Arthritis, Mild Scoliosis.
    Fibromyalgia~ 2009
    Neuropathy

     
    Old 01-23-2014, 02:01 PM   #4
    Mariner403
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    Re: Peripheral Nueropathy Severe pain?

    Hi again, Tori :-)

    And thank you for the thank you! In the interests of full disclosure, my only significant symptom of peripheral (recently changed to axonal) neuropathy is rather severe disequilibrium starting a year and a half ago. Unlike so many terribly unfortunate folks here, including you, I have no pain at all except for a brief episode of nighttime stabbing pains in my right leg a few weeks ago. I count myself as extremely lucky (so far) and feel almost guilty for posting here among folks who suffer from excruciating pain. Also, I'm an elderly guy (72) on Medicare with a good Medigap policy, so costs aren't an issue for me.

    That said, to answer some of your questions: I started out with a brain MRI prescribed by my primary. That was negative, so he sent me to an ENT who performed extensive tests for inner ear issues. Again, negative. Next up was the neurologist I'm still seeing. An EMG turned up positive for neuropathy, so she prescribed a whole sheet of blood tests, none of which I recognized. For that, the technician took 19 vials of blood! I felt like I should've been offered orange juice and a donut after that episode! But again, the results were negative for whatever she was looking for. Her English is excellent, but there's a kind of "culture gap" that seems to get in the way of efficient communication, but I gathered that the tests were aimed primarily at lesions that might reveal the underlying cause of the neuropathy.

    During my several visits, she also performed simple clinical tests for Parkinson's, such as the "floppy arms" muscle rigidity test (passed), rising from a chair with arms across chest (passed), the "runway walk" -heel, toe, heel, toe- (flunked), induced backward fall (passed), and a few others. (With my failure of the "runway walk" -entirely expected due to imbalance- I hope I'm never pulled over on suspicion of DUI! It'd be a case of "tell it to the judge, buddy".)

    So I'm a little perplexed at the reason for the DaTscan. Perhaps it's just the process of elimination that took her there. I was scheduled to discuss the results with her today, but was rescheduled until tomorrow because of some emergency. Her specialty is epilepsy, so I can see how an emergency could arise.

    And that's it for tests. As to medication, the neurologist put me on gabapentin right away, progressing up to 900mg per day. But when I mildly complained that the midday dose seemed to be causing me to nod off, she cut it back to 600mg, both capsules to be taken in the evening. Interestingly, both my primary and neuro recommended that I cut back on diazepam (PRN, between 15 and 20mg per day), so I've backed off to 10mg. Also, I've stopped my evening "toddy": about 4 ounces of whiskey and water each evening (quiet sobbing, since that's been my happiest time of the day... we older folks have to go for cheap thrills :-) Neither lifestyle adjustment seems to have helped so far.

    Sometimes I think my primary, an older internist with enormous experience and many geriatric patients who swear by him, got it right when he said about halfway through this process that "I think this might be something you're just going to have to live with". I think I can do that, and a cane has proven to be very helpful, more for confidence than anything else.

    I think it's wise for you to follow up on Lyme Disease and urge you to do it, finances permitting. I've a friend up in New Hampshire who was diagnosed with it (it's tick heaven up there), and many of his symptoms sound similar to yours, if memory serves. (His fears were so great that he bought a flock of Guinea hens to patrol his property, but the ticks got him anyway.)

    Again,

    Good luck and God bless.

     
    Old 01-24-2014, 06:50 PM   #5
    Mariner403
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    Brief Followup - Parkinson's

    The results of the DaTscan showed "normal" in all respects, so we can now strike Parkinson's off the list of possible underlying disorders. Yay! I was beginning to think of every little thing as a possible symptom. (E.g., smaller handwriting is a symptom, and never mind trying to fit "one thousand three hundred thirty-seven & 24/100" on a check's "amount" line requires fairly tiny scribbling.)

    Next step? Well, the neuro suggested a "second opinion" at Mayo or Shands if I wanted to go that route. Well, I've already applied at Mayo in Jacksonville (FL), but was turned down, and I don't trust Shands. So it's just a matter of learning to live with disequilibrium, and being on the alert for more serious symptoms. I can do that.

    I wholeheartedly wish and pray that that your situation could be as simple as mine. I can't celebrate my luck when thinking of you, dear.

    Good luck and God bless,

    Frank

     
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