I don’t often talk or write about my physical pain, mostly because pain does not define me as a person. Currently, I have several pain conditions. I suffer more in the winter months and do amazingly well in the summer. Sometimes I can get hit with flare ups from multiple conditions all at the same time, typically around my womanly cycle. That was this last weekend, and yes, that was basically hell.
The pain is not so intense that I require pain killers to function. In fact, I usually only take one over-the-counter pain killer (Tylenol) once or twice a month. I save those beauties for the super tough days. But the pain is always with me; it doesn’t go away.
In doing research about hyper-joint mobility syndrome (closely related to EDS, if not the same?) I discovered it is not uncommon for people with this type of condition to have extreme fatigue by mid-afternoon. That is me for certain. Each day at about four in the afternoon, I am ready to settle on the couch. If I sit, in the latter part of the day, then I will have a difficult time getting back up. Sometimes I have to move all day, e.g., standing, walking, cleaning, errands, etc. because more often than not, as soon as I wind down and take a rest, I won’t be able to move much anymore. That’s why I am prone to spend one or two days a month doing massive non-stop cleanings of the house. It’s the only way I can do housework: all or nothing. Housecleaning itself usually sets me back two to three days in intensified pain, but manageable.
When I take my three to five-mile walks, most days in the summer, and a few times a week in the winter, I am fighting through the pain. Pain in my knee joints, hips, and sometimes back. When I say, “I am taking a walk,” it means a lot more to me than just a walk. Forcing myself out the door means forcing myself through the pain.
Simple tasks, like opening a lid on a jar, bending to retrieve something from the floor, or walking up and down stairs, hurt. I don’t loosen up and feel better after stretches. Stretches actually make me feel worse. My pain feels very much like what I imagine a person would feel after he or she hiked ten miles up hill. It is an all over, generalized body-ache. Sometimes I feel like I took a huge fall or was run over by a thousand little trolls. There are also specific areas in my body that flare up, in the sense it hurts more. I don’t actually swell or get red in areas. Flare ups usually happen in my wrists, fingers, elbows, hips, spine, neck, knees, etc. I am sure I am leaving out some area, but you get the picture. The flare ups feel like a dull ache, not severely painful like a tooth ache, just painful enough that sitting here now, as I type it feels like parts of me are throbbing and/or burning.
I am thankful I can go through my days and still function. I can climb stairs with ease, despite the pain. I can clean. I can walk. I can drive. Somethings that are more jolting on my muscles are actually dangerous for me, as I never completely heal from injuries, and actually develop something similar to scar tissue where the collagen should be healing. Thusly, I still feel the three times I suffered whiplash from car accidents, the time I took a hard fall and landed on my left shoulder, and the time a glass-framed painting fell off the fireplace mantel and landed on me. Those pains won’t ever completely go away.
My children are used to seeing me on the couch. It’s what they have grown up with. What they know as familiar. It’s one of the reasons I find so much time to write. Fortunately, when I write, I can escape my body from time to time. I think my pain is one of the reasons it is hard for me to practice being in the present moment. I am fairly certain that the combination of sensory (bombardment) challenges, Post-Traumatic-Stress Syndrome, and constant pain, make it difficult for me to want to be present.
I wake up several times a night during the harder days, usually from the hip pain. I have to shift my body a bit, and then I am able to fall back to sleep. I consider myself fortunate. I fall asleep easily at a reasonable time of night and stay asleep for the most part. However, part of the reason I fall asleep is because I am utterly exhausted from doing relatively little all day. Just sitting on the couch hurts.
I maintain a fairly good disposition. As much as I hated hearing my mother repeatedly tell me that “Things could be worse,” when I was growing up, it is true, they could be. I do have some almost pain-free days. And on those days, I can truly appreciate the beauty of just being. And on my high-pain days, the longest stretch usually lasting five days, I can remind myself, or ask my husband to remind me, that this too shall pass.
I don’t worry too much about the future. My pain has been pretty stable; in other words, I have felt this crappy for about fifteen years and the crappiness hasn’t increased, at least.
I know NEVER to run; even a short fast sprint to catch my dog will result in body pain for several days. A tumble or a fall might keep me down for a week. And the only “minor” surgery I ever had, a small laproscopic “scraping” for endometriosis, took me a year to heal from. It should have taken two days. And, yes, I still feel the pain there, likely scar tissue that never will heal.
I am super thankful I listened to my angels about six years ago. I was scheduled for a full hysterectomy. I had the operation date, and was already setting up childcare when I heard a distinct and audible: “No.” I can’t imagine what would have happened if I had the surgery. I don’t think I would have ever been the same. If minor surgery took me a year to heal from, what would major surgery have caused? Plus, my acupuncturist at the time, a healer I still see when I travel to California, she gently had offered: “I would not take out any part of a body unless it was a life threatening condition.” In other words: keep all your parts as long as you can.
I think sometimes I accept my pain conditions too much, to the point I practically forget. I get super down on myself for not being able to get up and go, to run out the door and go toss a ball or shoot some hoops. Like other things in life, I sometimes long to be “typical.”
Sometimes I make a sacrifice and will do something I know will cause me days of pain, like painting or roller skating, riding a roller coaster, chasing my son, or climbing hills. Sometimes the sacrifice is very much worth it!
The pain has been a gift in many ways. Like I said, I appreciate the days of less pain. And the days of almost no pain are like heaven. And I have been able to spend valuable time with my children. If I didn’t have this pain condition, I dont think I would have left my teaching job (I am disabled.), because I loved teaching and brought income home for the family. If I was still teaching, I would not have been afforded the opportunity to be a stay-at-home mom and to homeschool my middle-son with Aspergers.
Because of my experience, I have gained empathy for those in physical pain and/or with chronic fatigue. And I have gained a remarkable awareness regarding my own body and my needs.
I also am blessed with a patient husband who never complains when I am down. And I get to experience his love demonstrated through service and support. I have seen miracles, too. Like this last month, when I drove over 1600 miles, in a few days time, and experienced little to no risidule pain. I kept asking my angels to relax my body and heal me. And when I do my automatic writing, much of my pain disappears, too.
I don’t know why I live a life with physical pain, anymore than I know why I experienced a difficult childhood or why I have Aspergers. I do know that all my challenges have made me a stronger and a more loving person. I know that I am capable of extreme empathy, because in this short life I have experienced so very much. And perhaps that is my gift: how my suffering enables me to love more fully and to connect more freely.
I cannot imagine my life any different. If one day my pain goes away, I am sure I will be delighted; but in the meanwhile, I am so happy that I know how to choose contentment over victimhood. And I am thankful that I recognize my pain is not who I am.
I wrote this post because there are other people who experience pain syndromes, and I want them to know I understand. And because I wanted to share a little bit more about my journey.
I think we all have special gifts to share with the world, and that if we can turn our trials into compassion for self and others, then we have already accomplished so very much.
In closing, I believe there is a reason for my life. I believe we have each been called to service and each given the tools necessary to answer our calling. For me, one tool in particular has been the continual humbling of spirit. I thank my pain for reminding me of my fragility and humaness, and for bringing me that much closer to reliance on something higher than self.
Hyper-joint mobility syndrome
Lyme Disease (The test has an over 60% fail rate. The test results were questionnable; the doctor based this diagnosis on ongoing symptoms. I tend to think I don’t have this, though, and my pain is a result of the above conditions.)
Perhaps I have?
Classic Ehlers-Danlos syndrome (I haven’t been diagnosed with this, but it is so similar to hyper-joint mobilitiy syndrome; though I do have most of the symptoms)
20 thoughts on “357: My Pain Conditions”
Me too!!$ I have all those except for Lymes which I just asked me doctor if I have because I’m in so much pain and can check off every symptom save one. I’ve been in bed all week. Dr said it was anxiety ( I hate that) but I know better. It’s awful sometimes.
I loved this post but sometimes ( like this week) I hate being me. In so much pain and everybody treats me like its all in my head ( it’s so not!)
Thanks for writing this;)
You are welcome. Healing hugs to you.
Oh and my kids are used to seeing me in the bed… Or couch. I can’t run either and my hips are the worst! I had two minor procedures ( d and c from hemmorage after miscarriage) and it took me forever to heal too. Sometimes when it all is pain- I get worried … Or when I clean my house and the next day am bed ridden;) sigh. Sometimes I just feel like burden…
It has made me extremely empathetic… At least there is that;)
Pain has been a best friend, and worst enemy. But as a life-long cohabitor of chronic pain, it has taught me the value of time well spent, defined the true meaning of joy, and this too shall pass. My attitude toward pain can raise it’s level, or substantially decrease it. Through observation of the behaviors I have witnessed personally, and in mainstream media, the brain is a much under utilized mediator between these two entities attempting to experience a full life, under the same roof. Balance in thought and action is nature’s most powerful medicine.
Of course I thought of you in this post; I even almost wrote about you. Yes: “time well spent, the true meaning of joy, and this too shall pass!” Excellent and fantastic :))) Yes about the brain, too. Bravo, lovely, lovely you. Excellent comment. Love to you.
🙂 Much love to you too Sam. I give you permission to share my journey, as you have understood it to be. I just posted a long message in a forum in response to a young mother who just found out the baby she is carrying will be born with all four limbs affected, like me. The Drs. painted a horrible picture for her. I shared my journey with Arthrogryposis with her hopes of illuminating a bright Light in her darkness. I know my Mom had a very difficult time 57 years ago, going it essentially alone, bucking a system that went against her beliefs. She was, and has always been my Light. It is my calling to keep it shining into the darkness. I will be taking my daughter and granddaughter to an Arthrogryposis Conference in July. So they will be able to focus on the Light and keep it shining too. If only those 7 Drs. could see me now! 😉
Substitute “Friends” for Doctors and this is how I feel! xx
🙂 Lovely to read this message 🙂 sigh So lovely 🙂
Great video!! I’ve never seen that! Awesome
Hi Sam – thank you for this post. You know where I am on all this…
btw – Ehlers Danlos has many different categories… the one you mention “hypermobilitiy syndrome) — I also have been labeled. I have been biopsied for the more life-threatening type (vascular)… which thankfully was negative. It’s a clinical dx and some docs don’t agree I have it… I’m loose but not extreme — hips super loose but that is the shallow sockets.. In any case, I do believe having faulty collagen causes a lot of pain – -and you are smart not to stretch… the ligaments don’t regain normal tension after they are stretched. You can stretch muscle – but you must know you are not stretching the ligaments too.
Wonderful honest post ~ I wish I’d kept some of my parts (many were removed and then deemed healthy)… stay well ~ Live and Love xxoo RL
I read this awhile back and forgot to send love and hugs. How dare I! hugssssssssssssssssssssssssssssssssssssssssssss Here’s to super strong and courageous you. Just think what great Buddhas/Budhhas (dyslexia) lol we will be in our next life. Love you so from across the land.
My drug of choice for pain and energy if coffee. The OTC pain killers work if not used too often, occasional Maxalt for migrains. The worry now, doc. says I need to give up coffee or cut down drastically, to avoid other problems cropping up. I REALLY like coffee danget!!
Coffee helps my pain so much and lifts my mood. I can have one cup. Two cups makes my heart race. I let my heart race once a week. Try green tea and coffee. Cut coffee amount you drink in half and drink some green tea instead. Coffee might help your mood, too. So if you go cold turkey be careful…it can cause depression. xo 🙂
🙂 ok!! Thanks for the idea!!I like green tea, I forget it exsists.
ive been reading your blog for the past couple of days, I was on a short break and laying on the settee due to fatigue. I also have eds 3, awaiting the biopsy results for 4. it was once mentioned that I had aspie traits. after reading your posts I can see so much of myself. thanks for writing so clearly about your experiences with aspergers. em x
You are most welcome; thank you for sharing. 🙂 Much love to you.
I share in your pain, Sam. I share in all the pain of everyone. I am a part of that pain. My hip, my knee, my feet are filled with pain, anywhere from a 1-9 (usually a 4) most of the day. I am seeing reflexologist and massage therapist about it and have made progress. All this to say that I understand and my prayers and thoughts go out to you and to all who suffer from pain continuously. Those who don’t cannot imagine how it affects our lives.
Oh, I am sorry to have read this; but I know that in a spirit like yours this aspect of your life only serves to make you stronger. 🙂 Still I am sorry you suffer. I am relieved to see a 4. I think I too am a 4 for 20 days out of the month, a bit higher the rest of the days; and if I eat, straight away I get a good 2 hours of fatigue and pain; except I do get a break in the summer months, usually from July – September… so that is good… by break I mean tolerable more days than not. Thanks again for supporting me through this; if and when the book ever is manifested, I will be sending you an autographed copy with a big smily face. 🙂
Wow, I have all those too except the lyme disease, I also had encephalitis two years ago caused by repeated outbreaks of shingles (no rashes so no visual clues) and now all my nerves are truly damaged too. Oh, and I did have the hysterectomy – I was having an op every 18 months for my endo and fibroids since I was 19, by 30 I was sick of it. Since the Big Op all has been well in that regard.
I was diagnosed with Asperger’s a month ago which has been an absolute revelation, the best news of my life – I always knew I was special! The AS diagnosis has enabled me to see all the others in a different light, not take them so personally, and find websites such as yours where people talk like me and actually MAKE SENSE!