My HMS story
After reading the research I now look back and realize that HMS has been a factor in my life for a long time. As a young child I often sprained my ankles and wrists and felt pain in my knees and feet when playing especially after and sometimes during running. I remember being able to push my kneecap around and thought it was cool. Doing weird tricks with my fingers to get a laugh from or freak out my friends and family. Sometimes I would complain about the aches and pains but was told I was a whiner or a sore loser depending on the situation. My mom took me to the doctor for various complaints in my legs (ankle, knee, hip) and was told it was just growing pains or poor circulation. So I stopped complaining and started coping by changing the way I did things so that they at least hurt less during. As I got older I noticed less pain during activity and more seemingly random pain especially at night. Eventually when I was about 10, I was in the kitchen with my mother, I was walking around and stepped wrong making my hip snap loudly. My mother looked about, looked back at me and asked, “Was that you that made that noise?” and I replied like it was normal “Yeah it was just my hip”.
This was the beginning of a long and ongoing ordeal. My mother now new that I had a lot of pain in my hip and thought that this was definitely not normal, especially considering how loudly is snaps. She took me to the family doctor who ordered an x-ray and claimed my hip to be perfectly fine. Not liking the answer or the doctors attitude she got an opinion about my gait from a chiropractor friend. He told her to demand a referral to Sick Kids Hospital Toronto and not to take no for an answer because something was not right. In order for my hip not to snap and hurt, I could not walk normally and so had changed my walk to compensate. We got the referral to Sick Kids and then changed family doctors.
Months later we went to our appointment at sick kids orthopedics where for years I was held under suspicion of exaggerating or lying about my pain because all the x-rays, MRIs, CAT scans and even a bone scan all came back normal. Finally after years of no sports (which I loved) and taking pill after pill to no avail, they opted for exploratory surgery. With this option they gave me one final warning, “Are you sure you are in that much pain?” and I said "Hell yes book the surgery"(not those exact words but you get my meaning :o). At this point even my parents were skeptical of whether I was in that much pain but with my persistent yes to surgery it all went ahead.
March break of 8th grade I went in for surgery and taadaa, I had my proof. I had torn cartilage in my hip joint, which was snapping back and forth across a ligament within the joint. It was all in the one spot that no scan could see, SO much for the oh so low odds of that huh. Apparently a tear like that normally occurs due to a large trauma like a car accident or fall but not in my case. After all was said and done, my pain was less but not gone. To this day I still cannot walk with a completely normal gait without my hip joint popping or grinding; but I would do it all again because I was right and it gave me some hope for my sanity (and a little pain relief too).
But soon after surgery I started to feel similar pain symptoms in my other hip along with increasing pain and aches in my knees and ankles. However, despite this I was given no help or treatment at Sick Kids. All I got was a "we don't know what else to do for you" and a “there are some drugs you can try.” But I didn't wanted more drugs that didn’t work. So, in the end I received no tests, not even a single question or examination concerning this spreading problem. Instead I got told "we think you might have rough joint surfaces...maybe, but we don't know for sure". And the advice to avoid all impact exercise including walking; in short, to avoid any activity that aggravated my symptoms. And was told if I was careful and lucky I would be over 40 before I had to get my hip replaced.
For years I tried to gut it out and block it out. I tried my best to act like everything was okay. Why you ask? because I was a teenager! I figured that telling people about it wouldn't do anything but complicate things and it's not like they could do anything to help. I will also admit that it was because I appear normal enough and who wants to be constantly explaining their pain to people only to be interpreted as a whiner, a wimp, a complainer or attention/pity seeker. Certainly not me. I had friends that new I had hip surgery, that was common knowledge, and they new it still had problems. What they didn't know about how much pain or about the other pains/problems I was experiencing. All I wanted was to be normal and pain free like everyone else seemed to be. But I couldn’t seem to get rid of the aches and pains I couldn’t explain or avoid.
So like the doctor said I avoided sports and activities for fear of more pain and injury. I also did it because of the belief that they new better than I did, right? Unfortunately for me it was the wrong advice, I should have been advised to go to physiotherapy and do careful strength training and proper gait/posture training in an attempt to prevent future injuries. It doesn't work for everyone but at least it would have been something. So instead my pain slowly got worse and worse until finally in university I snapped. I went to a school doctor and a school counselor and let it all lose. I told them everything and I vented about my pain, my fear and my frustration and they listened. It was there that I finally found someone who believed I was in pain and who wanted to help me find answers. They did tests to try to solve some of my problems and eliminate and narrow the possibilities. When they couldn't seems to find an answer they referred me to a specialist they believed might find the answer.
I was referred to a rheumatologist but I was moving to BC before I could get an appointment to see one in Ontario. So once I had moved and settled in I went and found a doctor in BC that I liked and who seemed caring and actually listened. They readily referred me to a local specialist and did a few tests of their own too. And finally, at the rheumatologist (internal medicine) Dr. Dunne's I got my answer "Hypermobility Syndrome". I was amazed, I got an answer on the first visit, in part due to all the testing that had been done previously plus the thorough questioning and examination. Dr. Dunne was very helpful, he listened and let me ask questions. Together we made a plan for me to work on some slow strength training to help some of my weakest areas and most painful. And best of all now I had a name, now I had an explanation for the wide variety of things that plagued me. They had seemed unconnected before but now made sense. Now I had something I could use to help me fight this and now I finally new I was not some hypochondriac or crazy woman. It was not all in my head, it was real and finally someone believed me and wanted to help me, and still does.
For me my HMS looked something like this (before a car accident in Feb 2005 made things go crazy), hip pain, knee pain, pain in ankles and feet, aching hands and wrists, jaw stiffness and soreness. But with some plans for slow strengthening my legs were getting back under control and I was having less and less knee pain and ankle aches though the hip remained pretty much the same.
Now after the accident I have constant and terrible headaches, pain and muscle spasms in my neck, shoulders, ribs/chest, upper and lower back, almost constant insomnia and non restorative sleep, drastically increased pain in my hips, knees, ankles, feet and jaw. Also get dizziness, lightheadedness, and fatigue. I feel tight all over and often feel like I am 90 years old and grow excessively tired after simple tasks.
Other HMS symptoms I have are slow wound healing, easy bruising and slightly increased skin stretching. Also experience decreased efficacy of general anaesthetics such as lignocaine; proprioceptive impairment (reduced ability to know where one or ones limbs are in space)
Don't get me wrong, I met my husband during all of this. In fact, it was at his urging that I went to the universities doctors and spilled the beans so to speak. Through it all he has been a pillar of strength, and to his credit, he is understanding and very supportive. He knows that he can never fully understand what I go through each day, but he does know that he wants to be there. Nothing has helped me more than knowing that although I have HMS/EDS and this pain that I am loved, despite it and for it. Because for better or worse it is part of who and what I am.
Over the years I have come to accept that my life will be different than the "norm" and that I will never be able to do some things, but that is okay. I dare to be different! Life is what you make of it and I am much more than someone with HMS/EDS; I am Jody Roxburgh, wife, daughter, friend and hopefully one day mother. I am me, and that is enough, HMS or no HMS. And that is my story.
Well I hope this helps everyone understand HMS and me a little better :o)
I've tried to keep my story short and so I hope it was worth the read :o)
For those of you who would like to understand the daily life of those of us out there who are sick but don't necessarily look sick, go here "The Stories Behind the Smile" and read the spoon theory, it is an excellent representation of how I have to try to plan ahead and plot my energy expenditure each day if I want to accomplish specific things.
But the ABSOLUTE best one out there for explaining me and my feelings is in the letter found at this link A Letter to Normals from a person with chronic pain because chronic pain is my biggest problem and this is it to a T.
I did not write either of these letters, but they are written by other people who understand what I go through. Although the disease may be different the experience is quite similar :o) Hope you find them to be as worth while a read for you as they were for me!
I’ve posted pictures of my hypermobility here