Wednesday, January 06, 2010

My Pain is a Ten

Depending on the pain scale you reference, level 10 pain is defined as either “the worst pain you’ve ever felt” or “the worst pain you can imagine.” I think the latter definition is the more valid of the two. After all, if the only pain someone has ever experienced is from a paper cut, then that’s the worst pain they’ve ever felt.

When you hang out on message boards for nurses, people with spinal cord problems, and people with degenerative conditions, you hear a lot of people talking about being in pain, and there’s more than a few who report 10/10 pain all of the time. I’m not one of them, and probably won’t ever be. No matter how severe my current pain gets, no matter how disabling and detrimental it is to my mental, emotional, and physical well-being, it’s not even close to the worst pain I’ve ever felt.

My level ten pain benchmark was set in 1978, when I was 15 years old.

That was the year I had a second surgery to try to remove a malignant tumor in my cervical spinal cord and brain stem. Because the cancer was totally intertwined with the cord, the surgeons had to cut out large tracts of the spinal cord along with the tumor.

After the operation, the damage to and swelling of the remaining cord caused central pain and severe allodynia in my upper left (breast, shoulder, arm, and hand) and lower right (butt cheek, leg, foot and right side of the pubic area) quadrants. Those areas felt as though they were simultaneously burning and freezing, and my skin was so hypersensitive that the slightest touch was torture. A puff of air across my leg felt like I was being flayed open. A tear that rolled off my cheek and landed on my shoulder hurt as bad as if a butcher knife was being plunged into my body. Laying on the bed and being covered by a sheet was gut wrenching, all consuming, unable to think, unable to do anything but sob and scream out loud agony. The massive doses of morphine they injected into me every three hours did little to ease the pain -- all it did was sedate me enough to keep me from losing my mind and begging to die.

Fortunately, the as the swelling in the cord went down, so did the hypersensitivity. I was able to cope with wearing clothes by the time I was released from the hospital several weeks later, and over the course of the next year the burning/freezing pain diminished (although in my left shoulder it was replaced by a host of other forms of neuropathic pain). My right leg no longer has central pain, but it is hyperalgesic. When I experience noxious stimuli in that leg, the pain is far more intense and lasts much longer than other places in my body.

But nothing I’ve experienced since then -- nothing -- has come close to the pain I felt back then. The only time I’ve felt anything close is when I broke my hypersensitive right leg in 2008. Even though the pain of that break left me screaming each time my ankle was moved, I could only rank that pain as 9/10.

I try not to judge people who say they are in 10/10 pain all of the time. They’re clearly experiencing severe pain, and I know how hurting so bad all of the time wears on you. It robs you of your life and it destroys your soul. But my personal belief is that if the pain you’re having doesn’t totally incapacitate you -- if you’re coherent enough to form complete thoughts, if you’re able to communicate with others using actual sentences, if you’re able to sleep each night and get up and go through the motions of life each day -- you can not honestly say, “My pain is a ten.”



Stephanie said...

Your last paragraph sums it up perfectly. The funny thing is I misunderstood the title for a minute, and thought you were about to write about your current state of pain, and all I could think was "If her pain is a 10, how on earth can she be posting to her blog ...". Them of course I read further.


Mistral said...

Hullo M'am.

Thank you for your post and your blog. I came here from your link at

How did I get there? I just Googled "support discussion forum partners people in chronic pain"....hoping that there would be people out there that can help me find the way.

Wrt the worst pain you've felt - thank you for describing it so honesty and vividly.

I am terrified of that.
Absolutely terrified.

The man I love is in chronic pain and it has worsened in the past month, to debilitating levels.

I have no prior experience of this - I mean I've not been with someone who faces this. I'm finding it hard to cope and the worst thing is that there is 'nothing' I can do.

Are their forums at which the spouses / partners of people enduring CP go? Because I really need to talk through it.

I feel like a 'bad person' when I can't make it better or when taking certain actions to be with me comes at such a high cost for him. And when I'm sad or have needs and he's in CP and can't be there, and then he is anyway....guilt, shame. My problems can't even compare to what it must be like to be tortured.

Also I've always feared something happening to those I love, in the past. Now I'm with someone to whom something has and is happening, that is very, very bad. Awful, and frightening and sad. He seems to cope better that I do. I just don't "accept" that he has to suffer this.

Sorry to go on like this....

Is it even okay to ask you?
I thought it might be because you have the blog, but I don't know what is okay to say or not. I don't know where to Be.

Thanks in advance for any thoughts. I've only read this post because it's about 02h00, but will most likely read more, very eye-opening. I'm not keen on too much denial if it costs him understanding.

Regards and also, I am sorry that you have to hurt.

The HipCrip said...

Mistral, I am so sorry that your husband is in pain, and that you're hurting because of it.

From talking with my husband, I can tell you that he also experiences the same emotions you're going through -- the burning desire to help, the frustration and guilt when he can't make it better, the shame of wanting the "old" me back again. It's all natural, and none of it's easy. As someone who's been both, I think it's far easier to be the person in pain. The utter helplessness you go through when watching a loved one suffer is, for me, worse than the pain itself.

As far as support for you, try the Well Spouses Association ( ). They describe themselves as "a landing spot for partners of the chronically ill and disabled." I had a chance to view their online discussion forums before they required registration. While there are still kind and caring people there, there are also a good number of burned out, angry individuals who appeared to have little of the incredible compassion found in your post. Some of the posts I read -- which talked only about the well spouses desire to be rid of their ill/disabled partner -- were deeply disturbing.

You could also ask your questions about what to say/do and what not to in the Pain Forum at the site where you found my original post.

But the best advice I can give you about figuring how best to support your husband is to ask him.

You sound like a lovely, caring person, Mistral. I hope you do find a group of your peers who can offer you support and a place to let it all out. Feeling you have no one who understands what you're going through is awful.

May you and your husband both find a way to ease the pain you're feeling.

Mistral said...
This comment has been removed by the author.
Mistral said...

Many thanks for your reply and kind words. Would it be possible to ask a few questions in a less public space? If your policy precludes this, that is also fine. My email is Of all that I have read so far, yours seems to go to the essence. Much appreciated.

Janice said...

Hi Penny! Long time no hear from! So sorry to hear you've been struggling so w/pain. I see you've gotten a pain pump. I hope, real soon, your pain becomes manageable.

I'm one of those folks who has level 10 pain everyday. Well, it's really every morning. I have a very low pain threshold. However, level 10 for me was labor pains and kidney stones pain. When I now awake each morning feeling like I'm in labor or suffering from kidney stones, I rate that pain a 10. Not to mention, I'm screaming bloody murder and praying for relief all the while. I hope and pray that the pain goes down. I'll take 7 or 8 out of 10, at least I can function.

By mid-morning, most days, the pain subsides but not below 6 or 7. I think I might now have a med that works but the relief is short lived. Fentora is very new to me and only to be taken on days when regular meds doesn't relieve the level 10 pain.

Good to see you blogging again. I didn't notice earlier as I've been away myself. You're in my thoughts and prayers. Take care (((((Prayers, Love & Hugs))))) p.s. Hope hubby's doing well also.