One Patient's Positive Perspectives

lupus leg neuropathy gnaws at nerves

Long full busy work days for many lupus patients can end in evenings filled with exhaustion and fatigue.  It seems activity and responsibility don’t really slow down to accommodate this lupus patient, so the “break” she keeps wistfully hoping will be just around the next corner, just isn’t.  Recent days at home and work have been especially busy and tiring, so, as result recent increases in lupus leg neuropathy thwart all natural efforts to obtain a restful night’s sleep.

This irritating neuropathy pain that gnaws at nerve endings and burns throughout lower limbs makes falling asleep nearly impossible.  Reluctantly reaching for Tramadol pain medication  proves to be the sole effective pain escape and solution.  Meanwhile, hope persists that Benlysta infusions will soon ease lupus symptoms, and start making a change in a recent cycle of pain and lost sleep.

Tramadol is one of those drugs that is on the fence between narcotic and analgesic.  It interacts powerfully with opiate receptors in the brain, but still allows a good degree of mental clarity with less grogginess than standard narcotics.  However, although it is classified as an analgesic, I have heard from my pharmacists that it has similar narcotic addictive  or habit-forming properties as opiates, and that some patients have had to enter rehab programs to break their dependency upon it.  It has been described as a drug of potential for abuse and habit-forming.

Tramadol can be habit-forming

Several years ago, when I was suffering extended excruciating lupus joint pain, I went through a period of several months when I was taking the maximum permitted daily doses of Tramadol, but my pain was still unabated.  Even the maximum dosing was insufficient.  My husband initiated some serious conversations with me about the effect the drug was having on me psychologically, and gently helped me grapple with the realization that the medication had begun to encourage self-defeating behaviors.  We talked to my doctor about it, and he encouraged backing off my use of the medication.

Accountability was a key to responsible pain med use

Greatly heightened accountability was needed.  My husband carefully and intentionally encouraged me through weaning off my excessive dependance upon Tramadol pain medication.  Then, I began following a self-imposed stringent rule, which I have strictly followed even up to last night’s intense neuropathy pain.  Each time I take any dose of pain medication, I report it to my husband.  He is told exactly when, how often and how much I have taken.

Over the past dozen years, this accountability has helped me use pain medication in a more responsible and reasonable way.  Accountability was a key to appropriate use of pain relieving medications.


Comments on: "Lupus neuropathy, pain, prescriptions and accountability" (4)

  1. Juju714 said:

    Pix, the leg restlessness you speak of at night sounds more like restless legs syndrome than peripheral neuropathy * of course you may have both. Requip is a good med for that. Just a thought. I’ve had PN for about 20 plus years. I also have cranial neuropathies. I have a seizure disorder-so I’m already on anti-seizure meds (tegretol)

    I’ve been on everything for PN from lyrica, cymbalta, elavil, neurontin, tramadol, you name it. None of those really worked, although I’ve stayed on cymbalta and tramadol. The only meds for me that work are narcotics. The stigma attached to them is outrageous. Did you know that statistics prove that chronic pain patients do NOT become addicted? Just sayin. I’ve been on the same meds, same dosages for a dozen years and they have given me quality of life.

    The greatest relief I’ve ever had has come from my brilliant pain management doc of the last ten yrs. He gives me radiofrequency ablations and cortisone. I don’t have the same type of PN I used to. It used to be extremeties-burning, freezing, zapping, hypersensitivity. Now I have a nerve/muscle entrapment syndrome – so giving me cortisone shots has helped immensely! I have bilateral carpal, tarpal and ulnar neuropathies. (also trigeminal neuralgia and temporal arteritis).

    Much love and HUGS< Julie

    • Julie: So good to get your comments on this issue! I am a newbie with treating my peripheral neuropathy. Years ago, it only showed up during the most extreme flares and was transient. Only in the last three to four years has it been a nightly problem, so I have only taken one medication for it, so far. Benlysta did not seem to help it, although it was generally doing a good job of otherwise controlling my lupus.

      You raise a good point about use of narcotics. Just because a drug is habit forming, or even addicting, it does not mean that a patient should not take it. The issue is sometimes benefits outweighing the risks. Tramadol was for ME not a good option on a daily basis, because I had previously shown a pattern of increasing dependance with increasingly negative psychological results when it was used daily, and I restrict its use to non-daily pain intervention as a relief drug only. I know that when I am on ultram or opiate derivative pain killers, my end result is not positive and I develop self-destructive non-productive behavior. With daily use, for ME the narcotics are worse than the disease. Narcotics on a daily basis are a bad choice for ME. As a relief drug, they are still exactly what I need, at times.

      There is a delicate balance when dealing with pain management, and that requires good communication between you and your doctor, and might even involve those in your personal life closest to you. Because of my past issues with tramadol, the self-imposed control that I have is that I have accountability with using it to my husband. EVERY time I take one as a relief mechanism, I tell my husband about it and explain why I am taking it and why I need it. If I need it too frequently, then I talk with my doctor about looking into to issue behind the pain, to see if we can resolve it another way.

      For many, narcotics are necessary as palliative treatment for otherwise unresolvable pain. Each patient is unique with how lupus affects them, and the role of pain medications must be custom tailored to meet their needs.

      Thanks for helping us look at other sides of this issue, Julie!


  2. Pix Swearengin said:

    I was diag with systemic lupus in 2000. My neuropathy started in 2004, prescribed with all pain/seizure type drugs that all had side affects that were not tolerable with working and functioning at home. I am supposedly taking the latest drug Lyrica, which I have back myself off taking the high dosage prescribed as I don’t want any damage from it. I have had surgery on both my feet and legs for the neuropathy, however this did not work for me at all and was very painful. I take the Tramadol also, but it does not take the pain way. I too do not want to take the high dosage, as I don’t want become addicted to it. The pain at night and the dancing legs are so hard to cope with that many nights are sleepless even with sleep medication. 2013 the neuropathy has started in my hands. I have very little sensation in my fingertips. My fingertips always feel like they are frost bit. My hands are very cold sensitive, to the point, I have to wear rubber gloves if taking items out of my refrigerator or freezer. I am at a loss as to which way to turn now. My neurologist gives me no hope, down the rode he says will lead to a wheelchair. Talk about depressing! And my rheumatologist doesn’t have any new answers. I have recently retired hoping the stress of work will help with the pain, but so far no change. Any ideas?

    • PS: Thank you so much for visiting my blog. It sounds like you are experiencing significant neuropathy symptoms and its challenges.

      When I reached this point, when the tramadol no longer worked, and the neuropathy was getting unbearable, I went back to my doctor. My health and the neuropathy were getting worse because of lost sleep due to the neuropathy. Gabapentin and similar drugs are not pain killers like narcotics, they are not “addicting” from what I understand. They are used as anti-seizure medications as well as for neuropathy. My doctor prescribed Lyrica, but my insurance refused to pay for it. Then, he started me on one gabapentin, with instructions to add one more up to three daily until they worked.

      Now, I would not go back to lower dose gabapentin by choice! When I reached three per day, I finally got relief and was able to sleep at night, and this helped both my lupus and the lupus neuropathy a great deal. Now, I continue to take gabepentin without any ill effects. I have been on it now for months and feel so much better.

      My advice is to talk to either your rheumatologist or neurologist, and consider taking the full prescribed dose. Some medications do no good until they reach a high enough “therapeutic level” in your blood stream. Taking one may do nothing for you. Many anti-seizure meds work that way. MY husband is an epileptic, and has taken various forms of these drugs for years.

      Perhaps, swallow your pride, if necessary, and go back to try the doctor(s) old ideas. If that doesn’t work, then tell them. If you follow their advice and it doesn’t work, then they are much more apt to move on to the next approach. Doctors don’t like chasing new treatments until you try the ones they prescribe, first. As much as we may not want to admit it, they can sometimes be right and we can be wrong.

      This may not be the answer you were hoping for, but it is my best advice, based on my experience with my own lupus over the past twenty years. I hope this helps. LA

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