17
Jun
11

My frustration with Chronic Pain:

“I used to do so much with my time. I once was working four jobs! How do I go from working two full time jobs and two part time jobs to just barely being able to stay awake long enough to tuck my kids into bed? How did I go from being able to walk the three miles to work to being able to barely walk to the other side of my house? How did I go from playing hide and seek, tag (“touched ya last”), and board games with my kids, to barely be able to handle having a conversation with them? Fibromyalgia. It stole a lot from it. And that pisses me off. It really does. But more on that in another post. ”

In addition to the fibromyalgia, I also have osteoarthritis and degenerative joint disease (they’re basically the same thing). The osteoarthritis is located not only in joints, but along bones as well. But if the patient only has the pains in the joints, that’s when they call it DJD. I have it in Every. Single. Joint. In. My. Body. Including. My. Toes.

{source: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001460/ ]

Osteoarthritis or DJD is caused by the wearing away of cartilage.

  • Cartilage is the firm, rubbery tissue that cushions your bones at the joints, and allows bones to glide over one another.
  • Cartilage can break down and wear away. As a result, the bones rub together, causing pain, swelling, and stiffness.
  • Bony spurs or extra bone may form around the joint, and the ligaments and muscles around the hip become weaker and stiffer.

It is an “old person’s disease” to me. Usually people over 55 start getting symptoms and by age 70, the diseased has progressed to the stage I’m in now at the age of 34. I got this disorder from my mother’s side of the family. Thanks, Mom!  Ha! At any rate, I think the DJD began early in age after a football injury tore apart and eviscerated my cartilage in my right knee. I didn’t have it operated on until age 14 though.  I learned to deal with the pain. The awesomeness of my autism, I believe, is what allows me to disassociate from the pain. My then orthopedic surgeon told my father a story: “Your daughter is one of those types of people who could be sitting at home alone, with a gouge on her belly, her innards dripping out and someone calls. She’ll answer in response to “How are you?” with “oh, I got an annoying scratch but other than that I’m good.” LOL He summed me up well!

My knee was in such poor condition, he felt he might have to operate it open-knee style instead of laparoscopically. However, a new manufacturer of one of these devices asked the doctor to try theirs out, let them film it for promotional materials and see how it goes. This was at a teaching hospital. I okay’d it, and we did it that way. Came out beautiful, if I do say so myself. I was able to walk out of the recovery room, holding my crutches instead of using them. J

From that point on though, the damage was done. You see, because I did not get my knee checked out at the time of the original injury (other than to elevate it and ice it the first day it was swollen), I developed a funny way of walking so I wouldn’t limp. It made my hips go out of proper alignment as well, leading me to develop scoliosis.  Having things out of alignment, tears things up quicker than normal.

“Pain and stiffness in the joints are the most common symptoms. The pain is often worse after exercise and when placing weight or pressure on the joint.

Your joints become stiff and harder to move over time. You may notice a rubbing, grating, or crackling sound when you move the joint.

The phrase “morning stiffness” refers to the pain and stiffness people feel when they first wake up in the morning. Stiffness usually lasts for 30 minutes or less. It is improved by mild activity that “warms up” the joint.

During the day, the pain may get worse with activity and feel better when you are resting. After a while, the pain may be present when you’re resting. It may even wake you up at night.”

[source: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001460/ }

You can see that there are similar symptoms between OA (osteoarthritis) and fibromyalgia (FMS). The morning stiffness, the fatigue, the pain, the pain, the pain. The problem?  “The pain is often worse after exercise and when placing weight or pressure on the joint.” See, to treat my fibromyalgia before, I’d exercise. It was the only way to get the annoying aches to go away. I’d take a nap after exercise, and wake up feeling pretty damn good! I could keep my house clean, I could cook dinners still, I could rouse around with my children still. Not a big deal anymore!

However, that wear and tear from treating my FMS made my OA worse. It wore out more cartilage in no time. Even though most of the exercises consisted of stretching (and bending at the joints!) it did considerable damage. I’m at the point now, where I can barely walk 10 feet before the pain becomes so intense I *have* to sit down or I will *fall* down.

Currently, to treat my FMS, I’m  taking two medications. One is called lyrica and it takes away most of the muscle aches, the neuropathy pain in my feet, hands and upper back that feel like a million wasps stinging you at the same time, and allows me to sleep. Like, for real sleep. Like, I even dream sleep! Oh that is so awesome! And for more than an hour at a time usually. The problem? There’s a side effect to Lyrica which makes the fatigue 10 times worse! I couldn’t even get out of bed in the mornings anymore… my previous post mentioned my day –to-day routine and that has so changed since starting Lyrica. I don’t have the energy to do even that anymore! So, doctor put me on Savella. I had tried it before but it did nothing for the pain, any of it, and it kept me awake for days at a time. It was like I was on speed! My mind was going a mile a minute but my body couldn’t keep up! So, I had stopped taking it to try Lyrica. Well, since Lyrica puts me to sleep or just makes me so tired, we added Savella for the energy boost. It works! I just only take it in the mornings though so I can sleep at night and I had to add back in my Ativan because I became more anxious on the Savella than I was before.

However, as much relief from pain I feel when I manage to remember to take my pills, I still have CHRONIC PAIN in my lower back, hips and knees. They lock up on me when I’m trying to walk and then I fall. Or they give way, and I fall. Or they can’t lift me out of a chair and I fall. It freaking sucks! And if I try and treat any of this with its recommended treatments, guess what? It makes my fibro worse!

From the same source above:

Complications:

  • Adverse reactions to drugs used for treatment
  • Decreased ability to perform everyday activities, such as personal hygiene, household chores, or cooking
  • Decreased ability to walk
  • Surgical complications

These are the complications that come from treating OA, either with medication, physical therapy, acupressure (which hurts the fibro tender points!), and/or surgical options.

I think I’m at the point where surgery is needed but there’s a problem with that. Say, for an example, they operate on the lower discs in my back. They get them realigned and inject fake cartilage in there to help protect the discs from rubbing against each other, right? Well, now the rest of my spine is out of place, as my hips bones. Then my shoulders are out of alignment and so on throughout the body. This would then require multiple surgeries. I’m not sure I’m at that point yet because even if I do these surgeries, there may be complications. One person I recently heard of went completely blind, forever, following back surgery. I’m not sure yet that the unguaranteed results outweigh the risks involved. But I may soon not have a choice. Or rather, the choice will become: wheelchair or surgery. At age 34.

I had my children on purpose. There was a plan in place. One of the considerations of my plan was my age. I wanted to have them young enough so that I would be 45 years old when my youngest turned 18. Sounds good don’t it? 45 years old and an empty nest! I would still be young enough to enjoy those years.  Or so I thought. Now with my chronic pain issues… well, not so much, huh? Don’t get me wrong, I love having kids and it’s what I wanted to be when I grow up. That was going to be my job. But like others,  I would retire from my job and look forward to that time in my life. Imagine if you could retire from your job at age 45? Wouldn’t that been grand? Well, such as life. Because even if I didn’t have chronic pain issues, my sons have moderate forms of autism that affect their functioning abilities and they may never be able to live independently or interdependently outside of my home. I hope that they will… strong hope for my eldest. But I have hope that they can achieve this goal of living on their “own” by say, age 25 or so. They just need a few more years in their arc of maturity is all. Still, that would leave me at age 49. A great young age in which to enjoy retirement. It would’ve been nice. But it seems it won’t happen QUITE the way I pictured it. Between the OA and the FMS, the DJD, etc. I’m going to be wheelchair bound.

That in itself isn’t so bad, don’t get me wrong. But when you go from a person who worked four jobs at one time, who could and did walk for miles on end for the simple enjoyment of it, and so on to being wheelchair bound? I think I’m going through a grieving process. I know at the end of this process, I’ll accept my new normal. Just as I did with the fibromyalgia. Just as I did with my kids’ autism. Just as I did at every life-altering event.

I do not tend to ruminate on my problems. I will do a status update on Facebook about it, and get supportive comments. It’s my support group. But I do not spend hours a day thinking and wishing life were different. Of course, I do wish life were different but I found if I stay stuck in that mindset, I stay stuck in great pain, anxiety and eventually it all leads to depression.  I don’t like being depressed. It’s so…. Depressing! So I avoid rumination and if it’s a tough day, I give myself that time to wallow in pity for an hour or so, and then pick myself back up, dust myself off, lecture myself and remind myself of the positives in my life. I acknowledge the sucky and praise the blessings. That is how I cope on a daily basis of chronic pain.

It’s not easy on my family either. And I often do not complain out loud to them when I’m in pain. What’s the point of advertising my troubles where there’s no market to sell at? If I continually tell them “I’m in pain right now, about a level 6,” they’re going to get sick of hearing it. They will build up an air of “Yeah, but you’re always hurting. What’s new?” type of mindset.  Asking my kids and hubby for help makes me feel so guilty. So guilty I could cry. It’s not fair to them to have to wait on me, serve me dinner, coffee, whatever. But some days, I have no choice and I have to ask. Those days are coming more often than not. Maybe if I had the wheelchair, I could do more for myself because I could get to point B from point A without as much difficulty and pain.

There is a story out there that can be used to describe our life to others. To those who looks at us and see no deformities and ask “What’s your problem? Why can’t you just do it? The more you do it, the better/easier it will get! Quit being a crybaby! If you didn’t whine so much, you’d feel better. If you ate more vegetables, you’d feel better. If you’d pop vitamins like candy, you’d feel better.” And the list of unhelpfulness goes on. So, how do you explain to others that support should come in other ways than snide remarks of “you’re just suffering from laziness”? Simple. Tell them the Spoon Theory. You can read it here: http://www.butyoudontlooksick.com/articles/personal-essays/the-spoon-theory-written-by-christine-miserandino/  I still get teary-eyed every time I read it.

My husband now asks me “How many spoons ya got?” before asking me to do something and I return the favor. It’s a way of acknowledging the circumstances without making the other feel guilty if the answer is “none.”  It’s a way of acknowledging the sucky, without dwelling on it or complaining about it constantly which erodes sympathy, understanding and compassion that those of us with “invisible disabilities” so desperately need from our loved ones.  It can also be used to describe other disorders, such as Autism, or Sensory Processing Disorder. Any disorder actually. I hope you take the time to read it and understand it. It’s very valuable to the disability community in advocating support for themselves.

So, now you know a bit more about why I’m frustrated with my life.

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6 Responses to “My frustration with Chronic Pain:”


  1. September 19, 2013 at 8:27 pm

    I think this is among the most important information for me.

    And i’m glad reading your article. But want to remark on few general things, The web site style is perfect, the
    articles is really excellent : D. Good job, cheers

  2. March 21, 2014 at 9:28 pm

    I needed to thank you for this good read!!
    I certainly enjoyed every little bit of it. I’ve got you bookmarked to look at new stuff you post…

  3. July 21, 2014 at 3:18 pm

    Are there any good schools where you could double major journalism and creative writing?

  4. 5 Karyn Hilborn-Game
    July 26, 2016 at 9:48 pm

    Thank you for sharing your story. I am living with both conditions you mentioned Fibromyalgia and DJD and am also only 36. I am struggling to cope with all the things you mentioned: the guilt, the pain the lack of self worth the once independent physically active ambitious person turned into one burdened by fear of the future, depression and anxiety. Child grown up and hoping for a future afterwards but riddled with exhaustion and apathy.
    The fact that you have written such an inspiring article has given me hope. Thank you
    Karyn
    karynhilborngame@yahoo.com


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