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HIV/AIDS Blog Central

Neuropathy: Facts and Fiction

By Dave R.

May 3, 2013

Internet links shown in these posts are designed to provide more detailed information if required.

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'My neurologist says that my neuropathy probably comes from a back injury; is this possible?'

Oh yes; it's mainly called radiculopathy and is one of the many causes of neuropathy. It occurs when a nerve becomes trapped between discs and vertebrae (in the hands, it may result in carpal tunnel syndrome) and this is quite common. There is some light at the end of the tunnel for radiculopathy patients in that the trapped nerve may be able to be surgically 'released' thus relieving the pressure and the symptoms. However, the longer a nerve is damaged due to impaction, the less likely it will recover fully. A study in the British Medical Journal, showed that three quarters of back pain sufferers who receive no help will have pain or disability a year later, so the quicker you get your condition checked out the better.

'I've been told that neuropathy is a natural result of aging; is this correct?'

This is by no means true. Many neuropathy sufferers are older people but it affects people of all ages, especially in cases of diabetes, chemotherapy, or HIV-related neuropathy. Many African HIV positive children suffer agonies from neuropathy thanks to being supplied with older HIV drugs and neuropathy amongst Western children is unfortunately more common than you think.

'My doctor told me I just have to learn to live with it.'

Personally, I'd change doctor if I was told that but to be brutal, it's partly true at the moment because there's no cure for the condition. However, there is a series of about 10 medicinal treatments (plus many alternative treatments) which you can work through until one of them reduces the symptoms for you. That's not having to live with it; that's finding the best current way of making your life easier and you shouldn't accept anything less.

'Lots of people I know have different symptoms and my pain isn't the same as theirs. Have I got something else?'

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Just like the causes and types of neuropathy, the symptoms can vary widely but generally fall under one of the following:

Numbness, tingling, burning sensation, pins and needles, twitching (even restless leg syndrome is a form of neuropathy), loss of balance and sharp, severe pains. These are most often felt in the feet (soles of your feet), legs to your knees, hands and arms but can appear on other body parts as well.

If you have what they call 'Autonomic neuropathy' then various involuntary functions of the body may be compromised (breathing, digestive functions and sexual performance amongst others) and bring further misery.

So just because your symptoms are different doesn't remove the possibility if neuropathy. Personally, I believe the symptoms you 'feel', are pretty much unique to the disease and you know it if you've got it but both the degree of discomfort and the range of symptoms can certainly vary.

'My doctor told me I have Idiopathic Neuropathy; what on earth does that mean?'

Actually it means very little. Idiopathic neuropathy is not a disease on its own, or even a form of neuropathy; it just means the doctors can't identify the cause of your problems. Many people leave the doctor's appointment feeling both dissatisfied and perhaps even disbelieved if they are told their neuropathy is idiopathic and it's the doctor's job to reassure you that your problem is no less serious for it. Up to 40% of all neuropathy patients have idiopathic neuropathy but that says more about the efficiency of the testing systems than the severity of the symptoms. With causal diseases like diabetes or HIV, the doctor/ specialist/neurologist will probably make a reasonable estimate that the cause is linked to those external problems. Similarly, if you have undergone chemotherapy after cancer, that is a common cause of neuropathy but in many cases, the diagnosis is made on the basis of your symptoms, which are so clear that there is little dispute as to what you have. If you tell your story and describe your symptoms, you should never feel that you're exaggerating, or being underestimated. The cause is not the end of the matter; the treatment that follows the diagnosis is what's vital for you.

'Although I've worked my way through the medication lists, my neuropathy is now being controlled by opiates. The problem is that I have a feeling they're not working as well anymore.'

This is a problem that many people eventually face. They work their way through this, that and the other medication and nothing has worked for long, if at all. They may also have reacted badly to the side effects of certain drugs and end up on opioids just to control the pain. The problem with opioids is that eventually, you need more of the same to achieve the same pain relief. This can be a horrifying scenario for many neuropathy patients and it requires careful and thorough monitoring by both your specialist and your home doctor. You should never be issued an opioid prescription and be left to get on with it; they're not M&Ms. They are powerful and potentially addictive drugs which need careful handling. If you are in the position where your current opioid seems to be losing its power, then consult your doctor straight away; don't wait until you are totally dependent and don't ever try to go cold turkey. With careful handling, you should be able to move onto another sort of opioid but the after-care and medical control is vital.

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See Also
Neurological Complications of AIDS Fact Sheet
More on Neuropathy
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HIV, Neuropathy and More: Avoiding Becoming a Nervous Wreck


Dave R.

Dave R.

English but living since 1986 in Amsterdam, the Netherlands. HIV+ since 2004 and a neuropathy patient since 2007. I've seen quite a bit, done quite a bit and bought quite a few t-shirts if you know what I mean; but all that baggage makes me what I am today: a better person I believe, despite it all.

Arriving on TheBody.com, originally, was the end result of getting neuropathy as a side effect of the medication, or the virus, or both. I found it such a vague disease and discovered very little information that wasn't commercially tinged, or scientifically impenetrable, so I decided to create a daily Blog and a website where practical information, hints, tips and experiences for patients could be gathered together in one place.

However, I was also given the chance to write about other aspects of living with HIV and have now contributed more articles about those than about neuropathy. That said, neuropathy remains my 'core subject' although one which unfortunately dominates both my life and that of many other HIV-positive people.

I'm not a doctor or qualified medical expert, just someone with neuropathy and HIV who has spent the last few years researching the illness and trying to create information sources for people who want to know more.

I also have my own personal website and write for PositiveLite.com.


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