When I was 16 I was sent to a rheumatologist because of joint pain I had been experiencing since I was about 8 or so. My real first memory of the pain was this job I had when I was 12 because I would be standing for 8 hours a day and it was agonizing on my knees. I would constantly bend my knees all day to try and relieve it but by the end of the day, I was in serious pain. One day I came home and sat down with such relief but when I went to stand… my knees collapsed from just the pain. Anyway, I was also pretty clumsy as a kid. Had a lot of sprained ankles and some of them didn’t heal very well. Went to physio for a long time on one of them as I recall. I bruised very easily. Some of which I call mystery bruises because I just have no idea where they come from. My skin scars very easily. It is fragile and if I scratch it, it will rash and bruise as well.
I was sent to the rheumatologist because they thought I might have RA or lupus. But he diagnosed me with hypermobility syndrome (called joint hypermobility syndrome now). And on my way to developing fibromyalgia, although he certainly didn’t tell me that part. I was just told that my pain was due to hypermobility. And to exercise. And the sort of exercise I should do is muscle building, to hold my joints in place. I was active at that age. I rollerbladed regularly, even though that caused me pain. Walked everywhere well into my twenties because I didn’t want to get my license. I tried strength-building exercises but the pain was a great deal more than I could handle… and be able to walk anywhere. Although I continued to exercise which caused me pain. And work jobs which caused me pain. And then got diagnosed with fibromyalgia and thought maybe that accounted for all that pain.
What is interesting currently about hypermobility syndrome is that it is now being categorized as Ehler-Danlos Syndrome, Hypermobility Type; the least severe of the EDS types. The fact is both existed before, but both are the same thing according to some researchers now. It is just that EDS is so rare it is not often diagnosed at all. So often missed.
Maybe it is a distinction without a reason. Maybe each label could be used in either case and it would be fine. The problem is that other symptoms are associated with hypermobility syndrome and EDS hypermobility that should be mentioned. And when I was younger it was all about just explaining away the pain with a label. Pain that was pretty bad at that age and never went away and was never properly treated. And other symptoms, well, those have nagged me for Years. Some of which are quite apparent now and really make a lot of sense under this category. I was quite disturbed by then to be honest but now they make complete sense. Not that there is much to do about them but I will have to mention it to my doctor because it does eliminate the need for more tests for sure.
- Easy bruising, scarring that is stretched, thin and often wrinkled, and stretch marks that appeared at a young age and in many places across the body. The skin often feels soft and velvety;
- Weakness of the abdominal and pelvic wall muscles that presents as hernias (such as hiatus hernia) or prolapse of the pelvic floor causing problems with bowel and bladder function;
- Unexplained chest pains – perhaps the individual has been told they have a heart murmur and mitral valve prolapse;
- Blackouts or near blackouts that may be associated with low blood pressure or fast heart rate, and often triggered by change in posture from lying/sitting to standing, or after standing in one position for even just a few minutes; Click HERE for more information on these symptoms;
- Symptoms that sound like Irritable Bowel Syndrome with bloating, constipation, and cramp-like abdominal pain; Click HERE for more information on managing bowel problems;
- Shortness of breath, perhaps diagnosed as asthma because the symptoms seem the same, but not responding to inhalers in the way the doctor might have expected, because it is not true asthma;
- Noticing that local anaesthetics, used for example in dentistry, do not seem to be very effective or require much more than might be expected;
- Severe fatigue; click HERE for more advice on fatigue;
- Anxiety and phobias. (hypermobility.org)
Unexplained chest pains- well I have FM so I always assumed that was from that. But I have been told I have a heart murmur… sometimes. And sometimes not.
Unexplained blackouts or near blackouts- yeah, This. I thought something was going on with my blood pressure since it is low normal and really low. And yes, it is affected by posture significantly. I was thinking I had POTs or something, maybe from the migraines.
IBS? Hell yes.
Asthma? That isn’t really asthma? Yes. I was diagnosed with asthma but I don’t get asthma attacks and I take a lot of asthma medication. I have problems migraine medications which make me very short of breath, which they should not if I have asthma, but they do. I’ve been told I am sensitive to the medication. But I have often wondered if I actually have asthma because if I do it isn’t very controlled.
Also, moderately low bone density can be seen in Joint Hypermobility syndrome and EDS hypermobility both. That would have been nice to know prior to finding it out that is.
Also, there is easily bruising and bleeding when it comes to skin… now the easily bleeding is more an EDS distinction which makes me wonder about my label there. I have eczema which doesn’t act like eczema. In other words when I scratch my skin blood rises to the top easily, and then will often look like a hickie or bruise.
Now it seems like some researchers say there is no distinction between the two conditions. While others say the distinction is the severity of symptoms. The thing is with this form there is no genetic marker so really severity would be the only way to make a distinction here. However, whatever label you have the treatment apparently is the same. Keep in mind, I never had any treatment so back in the day that was rather lacking (surprise, surprise). So I assume it is better now.
What I think is important is to remember if one has JHS, is to pay attention to potential other symptoms… because I’ll tell you if doctors are not aware then you get a lot of testing for nothing. And it is frustrating to have these symptoms that you have no idea what is going on with them.
The Lack of Clinical Distinction Between the Hypermobility Type of Ehlers–Danlos Syndrome and the Joint Hypermobility Syndrome (a.k.a. Hypermobility Syndrome)” [Brad T. Tinkle, Howard A. Bird, Rodney Grahame, Mark Lavallee, Howard P. Levy, and David Sillence]