In which I am Stiff

It is morning after some afternoon yard work (a couple hours spent lopping back a shrub by 2/3, and then cutting down those branches for pickup), and I am waiting for arthritis medicine to kick in.

Then I realise that it has. Enough time has passed, and this is “better” (at least for the medicinally-mediated improvement). Which-all leaves me wincing, and wiping wet corners of my eyes on my shoulders. I am tearing up less from pain than frustration-with-pain. When I see my rheumatologist in a few weeks, I will have to explain that pain meds are not working so well, as even post-medicated I am in pain much of the time. I cope with it and “keep on truckin’ “, which is not to say that it doesn’t affect me. (I haven’t even been tracking my blood pressure, which I should be doing now that we actually have a mini-clinic on campus.)

Today I am not just creaky and feeling nauseous before breakfast and after breakfast + meds, but I am also stiff. It shows in the halting progress of my first foray down the stairs and the bumbling around the kitchen. (Thank you, hubby, for making the coffee! Again.) I fumble, and more than once drop things, and then in Slow Motion must bend over to retrieve them from the floor. Knees locked, legs straight, I reach down with my fingertips straining to touch the floor and pick up my sock.

Now, you would think that if I can reach the floor like that, then I am doing pretty well. There are arthritic people who have difficulty reaching past their knees. But all things being relative, I am indeed stiff. This is because I am normally hypermobile. On normal days (now Good Days), I can bend over, knees locked and legs straight, and put my palms flat on the floor. Oh yes, even when wearing 2-inch (5-centimeter) heels. I am really bendy, and had I been coördinated, would have made a good gymnast or dancer.

Later on in afternoon when I had loosened back up (still achey, just less stiff), I did a test to see what the morning stiffness means in terms of loss of mobility. Per this book on Musculoskeletal Assessment, “A tape measure is used to measure the distance between the tip of the great toe and the most distal point reached by both hands. Normal ROM is present if the patient can touch the toes. In the event the patient is able to reach beyond floor level, the test can be carried out with the patient standing on a step or platform to measure reach distance beyond the supporting surface.” So I grabbed a ruler and tried a step on some stairs, found it to have too little rise, and then went over to a small stage and did the procedure (barefoot), measuring just how far beyond the undersides of my big toes the ends of my middle fingers reached.

That was a change of 20.3 centimeter (8 inches).

When I bend over to pick something up, that involves hamstrings, hips, curve of spine, and shoulders. Flexibility is spread out over a series of joints, and loss of flexibility is thus cumulative, depending upon how all those joints are interacting. But even so, end result is still that 20.3 cm (8 in.) loss of what for me is normal range of motion (ROM).

Anyone who from one day to the next loses 20.3 cm (8 in.) of reach is losing a considerable amount of flexibility. It’s when we try to compare my personal (reduced) ROM to “normal” ROM that we run into a false comparison. “Normal ROM” dictates being able to touch one’s toes with fingertips. I have gone from my hypermobile reach to normal reach. If doctors or PTs only look at how I compare to the norming model, then they would consider that I am fine.

But I’m not fine — I’ve lost normal mobility. I cannot do what I normally do, how I normally do it, and furthermore, doing what I can involves pain. I don’t know if a PT would consider this amount of ROM loss to be “clinically significant”, and fact that I do regain my normal ROM over relatively short periods of time (within day or two), would likely remove the stiffness out of realm of rehabilitative significance (for PT).

You might simply wonder why I’m concerned with being able to pick stuff up from the floor with my knees locked; why not simply bend my knees? Well, I can, and I do sometimes. Doing so may not only result in some impressive cracking noises (no worries; it’s only air bubbles in joints), and even uses the large, strong leg muscles, but also requires me to use slightly different means to keep myself balanced, and involves different stresses on knees.

Truth be told, in such situations I find that squatting to reach the floor hurts more, and is harder to maintain my balance than simply bending over. I like to avoid situations that can result in falling, as I get enough bruises just from ordinary navigation.

In the end, I have to wonder if comparisons to normalcy need always be to standard-normal, as personal-normal may sometimes be better baseline for comparison. I am not living in standard-normal body, but my own. I am needing to do things that are significant for my life, howsoever that may be dissimilar to someone’s ideal of standard-normal life.

11 Comments

  1. 7 February 2009 at 19:14

    […] morning I’m again in pain and rather stiff.  I know that many of you have rather specialised knowledge, and would appreciate your thoughts on […]

  2. 26 January 2009 at 17:33

    […] of the knots worked out. Additionally, surgery left me 10-15 degrees less range of motion–to “normal” range, when I’ve got hypermobile joints–and threw my gait completely off. Thank […]

  3. qw88nb88 said,

    7 June 2008 at 0:22

    Howdy MJ,

    Your idea of using both a pain and disability scale is a very good one!
    I also deal with migraines, which posts can be read via this link.

    andrea

  4. MaxJerz said,

    6 June 2008 at 23:31

    Hi Andrea, I found you through the Pain Blog Carnival. I’m a chronic migraine sufferer, so much of my disability is cognitive impairment. My personal-normal is well above average: I work and process much faster than average-normal. Between my medications and my migraines, my cognitive abilities are much diminished. Like you describe, it is sometimes very difficult to communicate this to doctors. They look at me and see someone functioning (mostly) as “normal”, but compared to my personal-normal I am actually quite impaired.

    I keep a daily migraine diary, and in addition to my daily 0-10 pain scale, I also rate my disability on a 0-10 scale. This way, at least, I can start to communicate to my doctor that yes, I am being impacted even though he may not see it in talking to me.

    Glad to have found your blog. I look forward to poking around here more, and I invite you to visit mine as well.

    cheers,
    MJ

  5. 29 May 2008 at 20:01

    […] Buzzing About offers…   In Which I Am Stiff, which wonders when we’re comparing ourselves to “normal,” it might be better to use a […]

  6. 28 May 2008 at 7:06

    […] Buzzing About offers…   In Which I Am Stiff, which wonders when we’re comparing ourselves to “normal,” it might be better to use a […]

  7. Bendy Girl said,

    20 May 2008 at 15:47

    Hello Andrea, I’m just getting to know you’re excellent blog. I’m not sure if you know, but it is known to be a common issue for those with hypermobility syndrome and EDS to have problems with medication not working effectively. It’s recommended we do some simple stretches first thing in the morning to help with stiffness (it does) Good luck, Bendy Girl

  8. Alexis Kenne said,

    29 April 2008 at 0:03

    Treatment for joint pain include resting to allow the injury to heal. Warm baths and ice also reduce the swelling and provide some relief. Treatment only relieves the pain temporarily. Conventional painkillers have side effects. Treatment of Arthritis in the thumb depends on the symptoms and the stage of the disease. Some arthritic thumbs may be relieved with an aspirin. Exercise used as one of the rheumatoid arthritis natural remedies include performing aerobic exercises which include walking, dancing, or swimming. Exercise regularly and maintain a healthy diet and normal body weight. Also, you should get regular checkups.

  9. 24 April 2008 at 18:03

    […] Blog: In which I am Stiff […]

  10. 23 April 2008 at 13:49

    Sometimes doctors forget that not all patients fall into the “normal” range and need to be assessed on their OWN scale. This reminds me of a post Amanda Baggs did a while ago on how doctors keep dismissing her asthma symptoms because she tests out as having lung capacity that is in the norm COMPARED TO OTHER PATIENTS, not based on her own actual normal (healthy) lung capacity:

    http://ballastexistenz.autistics.org/?p=281

  11. kassiane said,

    23 April 2008 at 2:32

    I’m sorry you’re experiencing such pain.

    I’m also hypermobile (like, very very hypermobile) and have been known to take pics of “MY NORMAL” in to doctors when my complaint is reduced mobility, because of the loss of balance and because the muscle structure for dealing with standard issue flexibility just isn’t there.


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