Today I want to talk about an invisible and very limber monster called HMS. (Hyper Mobility Syndrome)
I am battling this monster and I can tell you that it’s a real painful bastard. It’s because of this monster that I can’t write a lot at the moment.
Let’s see what the experts can tell us about this physical monster, shall we?
Hypermobility describes joints that stretch further than normal. For example, some hypermobile people can bend their thumbs backwards to their wrists, bend their knee joints backwards, put their leg behind the head or perform other contortionist “tricks”. It can affect one or more joints throughout the body.
What does that mean exactly for a person who has HMS?
Most people have hypermobility with no other symptoms. Approximately 5% of the healthy population have one or more hypermobile joints. However, people with “joint hypermobility syndrome” are subject to many difficulties. For example, their joints may be easily injured, be more prone to complete dislocation due to the weakly stabilized joint and they may develop problems from muscle fatigue (as muscles must work harder to compensate for weakness in the ligaments that support the joints). Hypermobility syndrome can lead to chronic pain or even disability in severe cases.
Hypermobility has been associated with chronic fatigue syndrome and fibromyalgia. Hypermobility causes physical trauma (in the form of joint dislocations, joint subluxations, joint instability, sprains, etc.). These conditions often, in turn, cause physical and/or emotional trauma and are possible triggers for conditions such as fibromyalgia.
How can you identify this monster?
People with hypermobility syndrome may develop other conditions caused by their unstable joints. These conditions include:
- Joint instability causing frequent sprains, tendinitis, or bursitis when doing activities that would not affect others
- Joint pain
- Early-onset osteoarthritis (as early as during teen years)
- Subluxations or dislocations, especially in the shoulder (Severe limits to ability to push, pull, grasp, finger, reach, etc., is considered a disability by the US Social Security Administration).
- Knee pain
- Back pain, prolapsed discs or spondylolisthesis
- Joints that make clicking noises (also a symptom of osteoarthritis.)
- Susceptibility to whiplash
- Temporomandibular Joint Syndrome also known as TMJ
- Increased nerve compression disorders (e.g. carpal tunnel syndrome)
- The ability of finger locking
- Poor response to anesthetic or pain medication
What to do when you are battling a monster like this?
It is important that hypermobile individuals remain fit, even more so than the average individual, to prevent recurrent injuries. Regular exercise and physical therapy or hydrotherapy can reduce symptoms because strong muscles increase joint stability. These treatments can also help by stretching tight, overused muscles and ensuring the person uses joints within the ideal ranges of motion. Low-impact exercise such as Pilates or T’ai chi is usually recommended as they are less likely to cause injury than high-impact exercise or contact sports.
Moist hot packs can relieve the pain of aching joints and muscles. For some patients, ice packs also help to relieve pain. In many cases alternating the two (hot and cold) helps relieve the pain.
Medications frequently used to reduce pain and inflammation caused by hypermobility include analgesics, anti-inflammatory drugs (though these have been linked with an increase in pain and joint instability for some sufferers), and tricyclic antidepressants. Tramadol, a non-narcotic yet opioid pain reliever that is nearly as effective as narcotics, has been used in England to treat HMS joint pain, and it is available either by prescription from a doctor in the United States or from Mexico.
For some warriors battling this monster, lifestyle changes decrease symptom severity. In general activity that increases pain is to be avoided. For example:
- Typing can reduce pain from writing.
- Voice control software or a more ergonomic keyboard can reduce pain from typing.
- Bent knees or sitting can reduce pain from standing.
- Stretching as in some forms of yoga and weightlifting frequently produce unwanted symptoms.
- Use of low impact elliptical training machines can replace high-impact running.
- Pain-free swimming may require a kickboard or extra care to avoid hyperextending elbow and other joints.
- Weakened ligaments and muscles contribute to poor posture, which may contribute to other medical conditions.
- Isometric exercise avoids hyperextension and contributes to strength.
Bracing can be helpful when joints are injured or painful, as long as muscle strength is properly maintained.
Prolotherapy injections been reported to help for some. Allegedly it can strengthen degenerate tendons and ligaments, as opposed to masking symptoms. It is generally suggested that patients with HMS take longer to respond to prolotherapy compared to the average patient, and full recovery can potentially take months to years.
What to do when someone you know is battling this monster?
What you have to remember is that a person who is battling a monster like this, is in pain almost every day. They might have to cancel on some occasions because their body isn’t fit enough. Show some compassion, understanding someone will have more influence than you will ever know. Don’t Judge, Just Care!
Do’s and Don’ts
Say ‘But you don’t look sick’
Not everyone “looks like” what is happening to them. You would never say “you don’t look like someone who is going through a terrible divorce” if your stressed out friends still manage to put on a brave face and pull themselves together.
Say ‘You need to get more exercise’.
Trust me, a person with HMS knows better than anyone how important it is to exercise. If someone with HMS isn’t working out, there is a reason for that! For people with chronic illnesses, their physical limitations may make it harder for them to do traditional exercises. You try to exercise when your muscles are raptured or your joints are dislocated!
Taking everything out of the hands of the person you love.
Do not do that! People with HMS appreciate it if you will help them with the things that are difficult for them, like carrying bags or cleaning the windows. But they are capable of doing things themselves as well. Let them do what they can.
Try to convince them to go beyond their limits.
People with HMS have a very hard time to honor their boundaries. You trying to get them beyond will only make things worse. They will strain themselves to do you a favor!
Help someone who is struggling.
Just ask them if you can do something for them every once in a while. Most of the times they will decline, because they don’t want to be a burden. Just act like it’s natural to help someone. (because it is) For example, when you are going to shop just ask if you can run an errand for them.
Sometimes it’s the best support you can give someone, just listen to them. Let them vent for a while.
It can be a real effort for someone in chronic pain to show up on your party. You don’t have to make a fuss about that, just say that you are grateful that they are there and that you appreciate it. And if they can’t come, show that you understand and that you hope that they will feel better soon.
Someone who is suffering from chronic pain can at some point lock themselves away in a ‘bubble’. They tend to isolate themselves and stop socializing all together. Do not let that happen! There is always something they can do that is in their limits. Take them out for a little walk or stay with them for a while to talk or play a little game. Keep encourage them to do things, but without straining them.
I have been battling this monster for quite some time now. I discovered that I have to train my muscles on a regular basis without straining them to make the chance of injuring myself as little as possible. Sometimes I have to wear braces or use pain medication, but I try to limit this as much as possible. Activities like standing or sitting for a long time or activities that are likely to strain my muscles have to be avoid. My nerves are getting stuck between my joints or muscles a lot. My muscles are tired most of the time because they have to work so hard. I do a lot of yoga because that strength and stretches the body in a gentle way and improves your posture and the control over the muscles.
The hardest part of battling a monster like HMS is that it’s invisible, so other people won’t see what you have to fight.
It’s a painful monster to battle, but if you fight it the right way, you can keep it under control for most of the time.
Don’t Judge, just Care.
Lots of Love,