Thursday, January 16, 2020

If my viruses could talk....

.......they'd be saying, Not so fast, Missy! You think you're really going to have a fast recovery? Well, think again.

Oh, brother. After Christmas, when my shingles rash began to rapidly disappear, I assumed that my pain would leave with it. Woo hoo! I thought it was safe to let the recovery celebration commence.

And, as it happens far too frequently, I was very wrong. I just couldn't understand why I would still wake up in the early hours of the morning in serious pain; the kind that feels as though a burning poker were stuffed through my torso. It left me scrambling for my pain medications and then stuck in a very uncomfortable and frustrating hour long wait for the symptoms to gradually subside.

It just didn't seem logical that I would continue with this level of pain even though the rash had almost completely healed. So I did some reading and discovered with my dismay that what I was experiencing wasn't unusual. At all.

Oh, great.

I was getting close to needing a refill on my pain meds, so I called my internal medicine doctor's office and was informed, that, yup. This could persist for THREE MONTHS. During which such time it would be still considered normal shingles recovery. If, after three months, the pain was still present, then the condition would morph into something else: postherpetic neuralgia.

I do not want to deal with this. Seriously do not want. Here's why, this found on NIH PubMed site found here. (HZ refers to the shingles virus Herpes Zoster):

Postherpetic neuralgia is a debilitating complication of HZ. The risk of PHN after HZ increases with age. In a large population-based study, the rate of PHN (defined as at least 90 days of documented pain) increased from 5% in those younger than 60 years to 10% in those aged 60 to 69 years and to 20% in those aged 80 years or older.3 The pain results in large part from damage to the sensory nerves, causing neuropathic pain. The pain is often intermittent and not correlated with external stimuli. Paradoxically, areas of the skin that lack normal sensitivity to touch may be associated with increased pain. Light touch or the brush of clothing is sometimes perceived as being painful, a phenomenon called allodynia. It is not uncommon for the pain of PHN to interfere with sleep and recreational activities and to be associated with clinical depression. 
Many patients do not understand why their pain lasts after the rash has healed. Some fear that they are imagining the symptoms or that their complaints represent a weakness in character. Patients should be reassured that their symptoms are real and represent the unseen and persistent damage to the sensory nerves. 
Unfortunately, there is no intervention that reliably relieves the pain of PHN. Effective therapy often requires multiple drugs. Therefore, it is essential to undertake treatment in a systematic fashion that will allow appropriate assessment of both benefit and adverse effects for each drug. If 2 medications are started simultaneously and the patient has an adverse reaction, it will often be necessary to eliminate both medications. Another general principle is to have patients begin a medication at a very low dose and increase the dose gradually until either analgesia or adverse effects are noticed. Beginning with a dose that is lower than the anticipated effective level increases the likelihood of a beneficial effect before the onset of adverse effects. It is helpful to keep detailed records of medication trials, including dosage, benefit, and adverse effects.........continue reading here
My doctor and I both expect my pain to gradually diminish and fade away. But if it lingers past that three month mark, then it would be very important to have a pain management plan in place.  My doctor has discussed with me, and I totally agree with her, that the use of narcotic medications in a long term pain relief situation requires very careful consideration.  It's in my best interests to experiment with other non-narcotic or opioid medication solutions to avoid the potential for addiction. Here's our plan of attack on my pain currently:

We have added a tricyclic antidepressant medication to my pile of night time pills. In my case, it isn't being prescribed for depression, but some studies have suggested that its us may help in treating chronic pain, especially neuro type pain.  I am also taking gabapentin, more commonly used for seizures but also found to be helpful in shingles pain, and having John apply capsaicin  cream to my rash site four times a day:
Capsaicin, an extract from hot chili peppers, is currently the only drug labeled by the U.S. Food and Drug Administration for the treatment of postherpetic neuralgia.19 Trials have shown this drug to be more efficacious than placebo but not necessarily more so than other conventional treatments.20 
Substance P, a neuropeptide released from pain fibers in response to trauma, is also released when capsaicin is applied to the skin, producing a burning sensation. Analgesia occurs when substance P is depleted from the nerve fibers. To achieve this response, capsaicin cream must be applied to the affected area three to five times daily. Patients must be counseled about the need to apply capsaicin regularly for continued benefit. They also need to be counseled that their pain will likely increase during the first few days to a week after capsaicin therapy is initiated. Patients should wash their hands thoroughly after applying capsaicin cream in order to prevent inadvertent contact with other areas.
I've got to agree wholeheartedly with the last sentence about capsaicin cream. Hoo boy. I mistakenly got some on my hand and then used the bathroom. I won't elaborate further, but take my word for it. Don't be putting that stuff where you don't need it.

Other non-narcotic strategies include very very gently placing a cold pack on my back; and wearing loose fitting shirts or blouses. Bras and seams and elastics sent me running in pain to my bedroom, flinging off garments as I went. Not a pretty sight.

The skin on my back is so sensitive to any kind of touch, that I despaired of ever being able to wear a bra again. Which also wouldn't be a pretty sight. But then I saw this bra, on a very rare outing:

It is made of a very lightweight stretchy fabric. The edges are not hemmed, so are perfectly smooth. When I wear it, I can scarcely tell that it is there. Heaven.

I think one of the best pain relief techniques is diversion, and this little guy provides the best diversion of all:

That little face! Those pink cheeks! That sweet smile! Aren't grandkids therapeutic? Absolutely.

1 comment:

Kelly said...

Oh Julia, I'm so sorry you've got all this happening. Shingles are the worst. I read with interest your post on the Shingles vaccine since shingles are prevalent in my family. My dad had shingles multiple times with his first case occurring well below the age of 60 and my poor younger sister has had them multiple times starting in her 40's and her doctors won't give her the vaccine because she's not "old enough." My doctor said there was no reason a younger person like her wouldn't benefit and he thought the age restriction was in place to protect supplies and provide what supplies there are to the most susceptible population. Good grief, simple human decency should allow an exception in cases like hers! I'm just over 60 and no doctor has suggested I get the vaccine yet either but I'm certainly going to ask for it at my next physical. Thanks for sharing your painful journey and I hope you get real relief soon.