Phantom Pain Doulas

After a recent experience with phantom pain, I was thinking about how helpful it could be to have phantom pain doulas.

What is phantom pain? Phantom limb sensation is something that is experienced by amputees where it feels like the missing limb is still there.

It can be just sensation. For example, any time I talk about or write about phantom pain or about my missing leg, I feel a tingling throughout my “right leg”, even though my right leg was amputated 35 years ago – back in 1982. The tingling is similar to what you feel if your leg falls _really_ asleep, then you change position and you get that tingling / stinging sensation as the blood flow returns. It is very defined as to its location in the “limb”. I can feel the outline of all 5 toes, my heel, my calf and so on, as if my leg was still there.

Sometimes it’s discomfort – maybe in one very specific place – like the outside of “my pinkie toe”, or “my Achilles tendon”, might feel like someone’s pricking it with pins or thumbtacks.

It can also be pain. From mild to awful. Like someone is taking a sharp knife and stabbing it into my knee over and over again.

You may see articles that compare levels of pain, and they typically say that childbirth and phantom pain are at the top of the list, above broken bones, kidney stones, and tooth abscess. Having had three babies, I can definitely say that the intensity of phantom pain can be as overwhelming as labor pain.

It’s usually not that bad! For me, I’d say it only gets that bad maybe once or twice a year. (Usually when I have a fever.) But, I do have times, maybe once a month or every other month, where it’s bad enough that I have a hard time concentrating on my work or enjoying my leisure, or getting to sleep.

But, that frequency (once a month of needing attention, once a year of being overwhelming) is what I experience after 35 years as an amputee. It has become much less frequent over the years. For a NEW amputee, they can experience this pain far more often. It could be a huge help for them to have doula style support managing that pain.

What could a doula or other support person do to help with phantom pain?

Validation: Like with labor pain, one of the first steps is validation – “I hear that you’re hurting. I know it’s hard. I know you feel like you should be able to cope with it on your own, but I know it’s challenging and I’d like to help.”

Knowing about self-help techniques that help with phantom pain

• Counter-irritants: One thing amputees may do to manage the phantom limb pain is to cause another pain somewhere “real” to distract them from this pain. This might be biting their lip, pounding their fist on the remaining limb, or squeezing their fingernails into their hands. Counter-irritants can be helpful for many pain sources, but especially for phantom pain, it can give the sufferer a sense of being in control of that pain even though they can’t control the phantom pain. An effective tool for creating this discomfort that doesn’t harm them is reflexology combs. Learn more about them and counter-irritants here. Learn more about the theory of diffuse noxious inhibitory control here.
• Heat and massage: I find often, but not always, the cause of my phantom pain in my leg is actually tight muscles in my lower back, near my sacrum. (This usually happens when I’ve had some days of bad posture – like sitting on a soft bed and reading, which is hard on my sacral muscles.) So, heating pads and a good sacral massage can often relieve the phantom pain.
• Other amputees find other self-help techniques helpful, such as acupressure, exercise, putting pressure on the stump – I discuss them in this post I wrote years ago: www.transitiontoparenthood.com/janelle/energy/PhantomPain.htm
• Many of the other coping techniques doulas use in labor, such as breathing, attention focus, movement, baths, and so on can help. Phantom pain is often intermittent, coming in waves (like contractions), so support could look like labor support in early labor: sitting and watching TV or playing games for ten minutes, then helping the amputee manage a 30 second surge of pain, then returning to the movie / game.

Knowing about alternative medicine that can help with phantom pain

• Acupressure, energy medicine such as Reiki, biofeedback and cranio-sacral may help some. I wrote more about those years ago at http://www.transitiontoparenthood.com/janelle/energy/PhantomPain.htm, and specifically about Energy medicine here: http://www.transitiontoparenthood.com/janelle/energy/PhantomEnergy.htm

Knowing about medication

In MY EXPERIENCE (others may vary), here are things that didn’t help with phantom pain: Tylenol on its own, Tylenol with codeine, ibuprofen on its own, other NSAID’s, and alcohol. None of it did anything, really, so the self-help, acupressure, and energy medicine were essential to me for years.

What does help? What’s my best magic cure for phantom pain? One Tylenol and one Ibuprofen. Taken together. It’s gotta be both, or it doesn’t work. But together, it’s fabulous. No matter how bad my pain is, it’s gone in 15 minutes after I take this.

I LOVE that I discovered this about ten years ago. It gives me so much more of a sense of control over my phantom pain. I don’t take medication for mild pain – I want to go easy on my liver and taking large amounts of medication is NOT good for your liver. But it helps to know that whenever it gets too much to handle, or when I need to go to sleep or need to be at my best to teach, all I need to do is take a Tylenol and ibuprofen and it will be better in about 15 minutes and will stay better for about 6 hours. I never travel without my emergency stash of one of each pill (ever since that day in Disneyland where I had to buy one whole bottle of each at theme park prices!)

What you could do

As a doula, you know a lot about pain coping in general, and how to sit with someone who is in pain, and now I’ve given you some tips specific to phantom pain. For an “old amputee” like me, we’ve learned coping techniques that work, and we can take the occasional Tylenol/ibuprofen cocktail to manage it.

But a new amputee needs to learn those coping techniques, and they can’t be popping medications every day (because of impact on liver), so they need extra support. If you know any new amputees who are struggling with phantom pain, consider offering your support, even just a conversation about things that might help.

 

 

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Reflexology combs for labor pain relief

Counter-irritants for pain relief

As a childbirth educator and doula, I wish we all talked more about “counter-irritants” as effective methods for pain relief during labor and birth. By counter-irritant, I mean the person in labor does something which is uncomfortable but helps to distract her from the labor pain, such as biting on her lip, squeezing her fingernails into her palms, using a fist to thump on her thigh, or pulling on her own hair. These are all actions that are within her control – she can start or stop anytime she wants to – she chooses how intensely to do it so that it will bring her attention away from the contraction pain that is not within her control.

The issue is that some of these spontaneous techniques can cause pain or minor injury to her. I like to talk about these behaviors in class so partners know that if someone in labor is doing this, it’s because it’s helpful to her. We shouldn’t stop them form using a coping technique. But the partner may need to help her figure out how to adapt it in a way that provides the pain relief but doesn’t cause harm on its own.

Sometimes it’s a simple in-the-moment fix – for the mom who’s hitting her thigh we might place a pillow there to cushion the blow. For the mom digging her fingernails into her palm, we might be able to give her a washcloth to grip tightly, or better yet, a comb or brush to squeeze.

Birth combs – How to Use Them and Why They Help

In some traditional cultures around the world, laboring women hold onto wooden combs. When a contraction comes on, the mom squeezes the comb so it presses into her palm – she squeezes as long and as hard as she finds helpful. Then she relaxes her grip between contractions, but usually chooses to continue holding the combs.

What to use: I use reflexology combs from Mildred Carter’s Reflexology – shown in the photo at the top. Sadly, they’re no longer available… But here are some alternatives I’ve found that I believe would work well:

• Metal Comb or Aluminum Mane Comb
• Wood Comb or Wood Comb
• Hand Massage Ball and Foot Massage Ball
• Or really, any hairbrush or plastic combs from the drugstore as long as it has thick tines with blunt tips.

How to hold it: the photo at the top of this post illustrates it, and this drawing from Page 9 of this booklet on Acupuncture in Labor also shows how you would hold the comb.

There are a few theories as to why birth combs might be helpful.

• One is “Diffuse Noxious Inhibitory Control“. If we create pain or discomfort anywhere on the body, it causes the release of endorphins which reduce the perceived intensity of the pain. (Note: TENS and sterile water injections would also fit in this category of pain relief.)
• One is related to Gate Control theory: Our brain can only pay attention to so many stimuli at once, so the pressure on the nerve pathways of the hand travels to the brain faster than abdominal pain, and crowds out the abdominal pain signals.
• One is reflexology or Chinese medicine-based. There are meridians – energy pathways – that cross the palm. Pressing on trigger points there helps to release stagnant chi, allowing healing energy to flow.
• One is psychology – because the mom is in control of the pain from the comb, it makes her feel less out of control from the labor pain – more like she’s “working with labor pain.”

My experience with combs for pain

I am an amputee. Which means I have phantom pain. You may have heard it mentioned in studies where people rate the intensity of different kinds of pain. Broken bones, tooth abscesses, and kidney stones are pretty high on the list. But labor pain and phantom pain top the list as some of the most intense pain people experience. So, I’ll share how pain combs work on both these types of pain for me.

Although my right leg has been gone for over 35 years, any time I think about it (like as I type this sentence), I have a tingly sensation all up and down “where my leg should be.” About once every 6 weeks, I have pain that is severe enough that I can’t sleep through it or work through it. Over the years, I explored LOTS of ways to cope with phantom pain, including medications, massage, acupuncture, reiki and other energy medicine, etc. (I luckily have finally found something that fixes it for me. One tylenol and one ibuprofen. If I only take one of the meds, it’s completely ineffective, no matter the dose. But together they’re really effective!)

Prior to that, one of the most effective pain coping tools I had found was combs. As the phantom pain intensifies, squeezing the comb helps distract me from it. It helps me feel much more in control. It significantly reduces the effects of phantom pain, so I had used them for many years.

When I had my third baby, I brought my combs to the labor. My labor was quite fast. About 3 hours start to finish, with the 3cm – baby out portion lasting about 30 minutes. So, it was VERY intense. I was in a lot of pain with contractions, and my teenage daughter remembered the combs and suggested them. I used them through the rest of labor, and they were what made contractions bearable for me. Managing a contraction without them was very difficult, so having them was my top priority. At one point I’d gone to the bathroom and set down my crutches and my combs. When a contraction came as I was hopping toward the sink, I yelled for the combs – my partner tried to give me my crutches – which obviously would normally be a priority for me. But at that point I only wanted the combs, because I knew they were what would make the contraction manageable. In the photo below, you can see I was still holding a comb to manage the cramping contractions of third stage labor after my son was born.

So, the question is: are combs effective for people who have not used them for other pain management? (In other words, did they work for me just because they were a familiar pain coping ritual from my life, or would they work for anyone?)

I used them with two clients in labor. They both found them helpful for a portion of their labor. And here are… quotes from others who have used combs during labor

• When I would use the combs, I couldn’t feel anything compared to when I walked around without them. Tracy
• When the contractions peaked, I would squeeze my combs, and there was a big difference between “comb” contractions and “non-comb” contractions. I wouldn’t do a birth without them. Rachel
• I used two combs. They were men’s combs with the all the same size teeth, with blunt ends NOT pointed ends. I loved them. Didn’t want to let go the whole labour.  Marlee
• Do not under estimate the power of a comb.  The small blue plastic comb… was better then an epidural!  There are pressure points in your palm that help with pain relief in labor.  As a contraction built, I would squeeze my comb as tight as feasible, the teeth digging into my palm, hitting those points and providing immense relief.  I couldn’t have done it without that comb! source
• I held a small black hair comb in each hand, squeezing them into my palm… I’m not sure how my labor and delivery would have been without holding them, but it actually went pretty fast. And I liked the sensation when I tried it, which is why I kept on with it. Viola
• During contractions I was sort of searching with my hands for something to grab onto, I think to feel more grounded. My doula slipped a comb into my hand and I squeezed it instantly. It was awesome! ,,, I was still very much in pain, but it definitely made a noticeable difference and provided me with a bit of instant relief. I remembered her slipping it into my hand, but I didn’t remember what ever happened to it after that. I asked Dh one day if I used it for very long, or if I just dropped it after that contraction. He said that after Ds was born he pried it out of my still tightly squeezed hand. – Jennica

Combs are a cheap tool to obtain, and small and easy to toss into a birth bag, so I recommend them for all doulas as an option to bring along and try.

To learn lots more about coping with labor pain, check out The Labor Pain Toolbox, Comfort Techniques, and other articles on this site (or listen to those episodes on my podcast) and to learn about all the other topics related to the perinatal period, check out the book I co-author: Pregnancy, Childbirth, and the Newborn: The Complete Guide