“Pain is weakness leaving the body” - Tom Sobal
Well then,
I should be freakin' "Wonder Woman" by now.
Pain....is proof that you're alive.
- Soubi (Loveless Manga)
Q.E.D. I'm alive. I guess I could do a Colin Clive
(Dr. Frankenstein) impression.
"I'm alive! I'm alive." But that's pretty obvious since I couldn't write this diary if I weren't. (smartassedness and sarcasm are coping mechanisms)
But didn't I just compare myself to Frankenstein's monster too?
Yes I did, and the further you read the more apt you'll find that comparison.
'Cause I'd rather feel pain than nothing at all
- "Pain," Three Days Grace
Oooh, at this point "nothing at all," sounds pretty good.
(yes I know the song refers to emotional pain and not physical)
My journey with chronic pain noticeably began in my 20s, but the seed for some of the chronic pain I deal with now (and I turned 49, Sept. 1) may have been planted when I was 12. . .
KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and/or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
The first time I became really aware of constant and biding pain was in my 20s. My abdomen always hurt. It hurt to touch it, or to put any pressure on it. I could tolerate my toddlers crawling over me, because bonding was more important to me than the pain. But beyond that any other weight was intolerable.
You can image how long face to face intimate moments were. The barest minimum before my abdomen would scream, “GET OFF ME!”
I did mention it to my doctors, but they may have thought it was just shadow pains from surgery to remove an endometrioma, and the right ovary and fallopian tube which were fully engulfed. (at the time of removal the endometrioma was the size of a large cantaloupe) The scar I have from that surgery is the vertical Cesarean scar.
Then there was the appendectomy which left a huge scar too. The point is that it wasn’t like my abdomen was sitting happily there untouched.
But at some point I made mention of the stomach pain to pressure to one of the residents in the OB-GYN clinic at Denver General Hospital (now Denver Health). She had just recently heard about a new study about how we all have different number of pain receptors in the body. That some pain is caused by not just more receptors, but that those receptors were flipped to “on” all the time.
That may seem like “duh” moment now, but at the time it was forward thinking.
She wanted to “map” the areas of pain on my belly and then inject morphine at each pain point to turn “off” the receptor. If effective I was told I’d need to have the procedure again in about 10 years.
It wasn’t fun, having pins stuck in your abdomen to find the ends of the neurons that were turned on. Every time she found one, an ink mark would be tapped on my belly. It marked a site for an injection. By the time she was done a clear neural tree could be seen, primarily on my left side. Then the injections began.
By the time she was done, besides the residual pain of the pricking and the injections, my abdomen didn’t hurt. I was free of the pain! I could play with my kids, and have face to face intimate moments that could last! Ten years later I was still pain free, despite another surgery for an endometrioma on the left side (this time the incision was the Cesarean horizontal, and I kept everything else), and I didn’t need to go in for a “recharge.”
Good thing too, because few doctors seem to be familiar with this procedure.
Two or three years of being pain free was great! No doubt about it. Then my hands began to hurt, my hands and feet tingled, my skin would “hurt” all over (I call it “skin exhaustion” because that’s the closest I can come to explaining the sensation to others; how one feels when totally exhausted, except applied solely to the skin), dizziness, chronic pain that wasn’t in my joints, and I was experiencing muscle weakness. My heart sank, I had taken care of people in nursing homes and private in home care whose symptoms had in many cases, started out this way. It was one of my worst fears, Multiple sclerosis (MS).
When I brought up all these symptoms to my doctor, she looked at how I was playing with my hands, massaging them constantly. It was a movement I never thought about, I had seen my Dad do it often while sitting at the dinner table or watching tv. It was just one of those personal habits, I thought, like my sister constant humming when she was a child (and I do mean constant). It never occurred to me that he or I were doing it unconsciously in an attempt to deal with pain in our hands. She diagnosed osteoarthritis right then and there, and sent me for a blood test.
The test came back indicating that I had Pernicious anemia
Pernicious anemia (per-NISH-us uh-NEE-me-uh) is a condition in which the body can't make enough healthy red blood cells because it doesn't have enough vitamin B12.
Vitamin B12 is a nutrient found in some foods. The body needs this nutrient to make healthy red blood cells and to keep its nervous system working properly.
People who have pernicious anemia can't absorb enough vitamin B12 from food. This is because they lack intrinsic (in-TRIN-sik) factor, a protein made in the stomach. A lack of this protein leads to vitamin B12 deficiency.
- National Heart, Lung, and Blood Institute
The symptoms for pernicious anemia are:
Diarrhea or constipation
Fatigue, lack of energy, or light-headedness when standing up or with exertion
Loss of appetite
Pale skin
Problems concentrating
Shortness of breath, mostly during exercise
Swollen, red tongue or bleeding gums
Nerve damage (Confusion or change in mental status (dementia) in severe or advanced cases, Depression, Loss of balance, Numbness and tingling of hands and feet)
I also have one of the risk factors for pernicious anemia, it is in my family.
I began giving myself injections of B12 once a month. But the tingling and muscle pain still didn't abate so she sent to a neurologist.
This wasn’t a problem since he had already seen me (and still sees me) for my migraines. We began with some mental tests, asking me to add and subtract items in my head
(not a problem), remembering an oral ordered list, etc. He tapped with the rubber hammer, and did this and that, and then scheduled me for a Nerve conduction velocity (NCV) test.
Patches called surface electrodes, similar to those used for ECG, are placed on the skin over nerves at various locations. Each patch gives off a very mild electrical impulse, which stimulates the nerve.
The nerve's resulting electrical activity is recorded by the other electrodes. The distance between electrodes and the time it takes for electrical impulses to travel between electrodes are used to determine the speed of the nerve signals.
Electromyography (recording from needles placed into the muscles) is often done at the same time as this test.
Sounds painful, yes?
Yes, it was! My neurologist praised me saying I handled it really well. I asked him on what metric he made that determination, because I had been alternatively cursing and crying throughout the procedure. He replied that it was because I hadn't kicked him. (LOL, can't say it didn't cross my mind)
In case you missed it, this is where the allusion to being Frankenstein's monster comes into play. (all that electricity)
His diagnosis; fibromyalgia.
Fifteen years ago when I was diagnosed, fibromyalgia was just beginning to gain some respect. For many years it had been treated more as something of the mind, gold bricking, and since more women suffer from it than men, something lumped in the dismissive and misogynistic "hysterical disease" category.
Unlike now, there was no treatment for it. You just dealt with the pain, fatigue, the mental "fuzzies," and the derision from those who didn't suffer and had little or no empathy, understanding, as best that you could.
About 9 years ago I quite accidentally found out more of what was triggering my fibro pain. I already knew lack of sleep meant pain, but not much else. Then I went on a diet where I took out most milk and bread. All of a sudden I was pain free.
It was that quick.. taadah! no pain, I can move and I'm not tired. I felt reborn. My doctor never mentioned it.
The fact is there's little scientific evidence to support any single eating plan as a way to deal with fibromyalgia. Nevertheless, a trip around the Internet will show that dietary approaches to fibromyalgia abound. The variety is so diverse it's hard to imagine they are all aimed at treating the same disease.
- webMD
But reading through web pages that one finds , with exceptions, three common foods: milk and wheat being two.
The third one I would discover after we went out to dinner at one of our favorite Chinese restaurants. It has an all you can eat buffet and on that buffet there is always shrimp. Shrimp has been a favorite of mine since I was a child growing up in Denver, where eating shrimp in the 60s and 70s was for special occasions. Now I live in Massachusetts; GIVE ME SHRIMP!
That night, after eating shrimp to my heart's content, fibro pain returned with a vengeance. I lay in bed a ball of pain and there was nothing my husband could do. Shrimp, and all shell fish was now, sadly, off my menu, permanently.
About 8 years ago I also tried a massive Vitamin D treatment, but unlike many of the women I met on-line who also had fibro, my pain only got worse with the dosage.
One thing that group of women and I discovered in our web conversations, we all had had Mononucleosis between 10 and 14 (I was 12) and wondered if that had/has anything to do with getting fibromyalgia.1
Sometime after I learned the food triggers for fibro and learned to manage them, my feet began to hurt. Chronic pain. Never really ending, but made worse by standing. Just getting up from bed or a chair became an exercise in courage. Moving from a position where I was not standing to standing required some mental preparation. Walking? HA! How much of a masochist do you think I am?
Oh yeah, I vote for democrats hoping they'll be progressive, never mind.
I do see a podiatrist for bone spurs in my heal and for my extremely high arches. I wear Birkenstocks (a.k.a. "Jesus sandals" ) everywhere and never go bare foot (I am hard pressed to give up my Birkenstocks during the winter) But it was the cobbler who makes my other high arch shoes (yes I'm back seeing a cobbler again) who told me to go to a massage therapist for my feet.
The effects were immediate, and I shouldn't have waited the 6 months that I did. In my defense having your feet massaged seemed self indulgent, and upperclass/littledogasfashionaccessory-ish Something so simple, so natural and frankly not western medicine, and my feet do not hurt any more. I now have a standing appointment every two weeks. ("standing" HA! very punny)
All this brings me up to April 12, 2011. It was a nice day, kind of perfect. I was waiting for my turn to turn right from one busy street onto another when I was rear ended.
It didn't seem like much a tap, indeed there was no damage to my car. Inside, however, even with a set belt on I felt like a James Bond martini. When my head cleared a little and I put my car in park and pulled up the emergency break something inside my head said "look forward and stay still. Do not turn your head."
I listened to that little voice inside my head (sometimes it gives good advice ;-) ) and waited for the ambulance to arrive. However since my car wasn't damaged, no one thought I was. When it became clear no ambulance was on the horizon, I fumbled trying to get to my own purse on the passenger seat without turning my head. I called the ambulance, and then called my husband to tell him to pick up our son from school (that was where I had been going).
The accident gave me three bulging discs in my back. One in my neck and two in my lower back. And, my doctor thinks, turned on my fibro, which after some nights of not sleeping with only AdvilPM to help alleviate the pain (I was on Vicodin just after the accident until the middle of July), fibro pain returned and ordered the lobster.
On those nights (one recently where I woke up screaming from the back pain, and the fibro pain - again there was nothing he could do but hold me as I snobbed through the pain) a new pain buddy to sister fibro has decided to be an occasional "plus one" to the non invitation. It's a pain that shots down from my wrist to my elbow on the inside of my arm. It comes mostly at night when I'm sleeping and sometimes when I'm holding uber tome, "A Dance with Dragons," by George R. R. Martin, which could also be used to hold down a tarp in a cat 1 hurricane with nothing else needed for weight.
In the middle of August I finally met with a pain management doctor. My primary suggested her back in June. But to me this said "this is long term." And that is nothing that I wanted to hear. The car accident and ensuing pain has already caused a big disruption in my life (canceled trips, ruined plans, etc.)
I have had physical therapy since a week after the accident, five times a week. (three on land, two in the water).
My massage therapy now extends another 1/2 hour for my back. It's not the "oh this is so relaxing" kind of massage. This is the "this feels good when she stops," kind.
Since both my primary and my pain management doctor think the accident turned the "fibro pain circuit" and that's what I am feeling more than pain directly related to the accident (I'm not saying that right, since triggering the fibro is a direct relationship), she is treating my fibro in hope that the back pain will cease.
I am on Gabapentin, an antidepressant, that has been shown to work, and FDA approved for the treatment of fibromyalgia. I am so sensitive to it however that I am not on an adult does and I cannot manage the three times a day dose. Once a day is enough to cause me to sleep, and like the vidodin before it, I don't take it within 6 hours of having to drive.
She has also requested that instead of just avoiding wheat I go on the full gluten free diet. Which includes not only not eating wheat, wheat gluten, but also includes rye (I love rye bread and reuben sandwiches), barley (no more barley and beef soup), anything with, malt, dextrin or maltodextrin.2
A gluten free diet is also one of tools in the fibromyalgia pain treatment toolbox.
This has just shot my diet plans all to hell because my 40 and 60 cal fudgesicles have either dextrin or maltodextrin in them. In fact I haven't as yet found any diet foods that contain chocolate without containing dextrin or maltodextrin too.
And "diet chocolate" was the thing that would keep me on diets and defend against cravings for other no-nos.
There is also the suggestion that oatmeal should be included on the list of foods you can't have on a gluten free diet.
I'm not adversed to reading labels, I've been doing it for years to keep MSG out of our diets as it is a trigger for my son's and my migraines, plus other things we have to stay away from for other reasons. There is just damn few choices out there, that are for a gluten free diet.
And damn fewer choices that actually taste good.
I am also supposed to exercise several days a week for 30 minutes, as part of my fibro pain treatment plan. I’m looking forward to getting back on the recombinant stationary bike again. For months after the accident that position was impossible.
Currently there has been a very small drop in pain and I have been able to go back to doing ALL of my physical therapy exercises. Personally I think it's just the benefit of being able to sleep again, which helps mitigate that trigger, and that is a direct result of the Gabapentin.
I still can't walk the whole of the Super Stop and Shop or Shaw's markets
“Pain is weakness leaving the body” - Tom Sobal
I should be freakin' "Wonder Woman" by now.