This article appears on the Ehlers Danlos Support UK Facebook page during EDS Awareness month. It offers great tips for managing the dislocations that are a part of every day life for us zebras.
“‘I’M JUST POPPING OUT FOR A WHILE!’
Article by Jason Parry, Highly Specialist Physiotherapist
One of the most common questions I get asked is how to manage dislocations and subluxations, which is quite strange if I happen to be popping to the shops for some milk at the time. However, in all seriousness, this really is one of the most frequent questions I face in clinic when treating many of my hypermobile patients and let’s face it, it really is no laughing matter.
So where do I begin? Well, a good place is to firstly understand the difference between a dislocation and a subluxation.
A dislocation is defined as “displacement of a bone from its natural position in the joint”. This is where the two bones that form a joint fully separate from each other. If we consider a shoulder, for example, which is a ball and socket joint, a dislocation occurs when the ball (which forms the top of the arm bone) slips entirely out of the socket it should sit in within the shoulder. This can happen in any direction, but the main point is that the two bones completely separate. Ouch!
A subluxation is basically defined as “a partial dislocation”. It can be no less painful than a full dislocation, but the two bones that form the joint are still partially in contact with each other. So once again, if we consider the shoulder joint as an example, the ball which completely came out of the socket in the dislocation example above would still be partially sitting in the socket in a subluxation.
These events can happen in almost any joint, but some are more commonly involved than others, with shoulders, knees, thumbs and ankles seemingly some of the most prevalent.
Both dislocations and subluxations can be painful, irritating, infuriating and occasionally debilitating problems. However, they don’t need to ruin your life and can, with patience, effort, trust and time, be managed. Not necessarily completely eliminated, but managed.
Let’s first look at the reasons why dislocation or subluxation happens with a quick anatomy lesson. The main reason is abnormal collagen composition. Collagen – primarily Type 1 collagen – is the main structural protein of the various connective tissues in the body. It is found in ligaments, tendons and joint capsules, and makes ligaments and tendons strong like little ‘guy ropes’. What do ligaments and tendons and joint capsules do? Ligaments connect bone to bone, tendons connect muscles to bone, and joint capsules are like envelopes of tissue that surround a moveable (synovial) joint. So we can see that these ligaments, tendons and joint capsules play an important role in giving a moveable joint its stability.
Let us now consider hEDS (hypermobile type EDS). This is a Heritable Disorder of Connective Tissue (HDCT) caused by a defect in the structure, production or processing of collagen, which makes the collagen in ligaments and tendons stretchier (more lax). This means that joints are potentially less stable – hence greater propensity for subluxations and dislocations.
There are other reasons for dislocations and subluxations:
• Altered muscle tone: This can often account for dislocations. Inappropriate muscle patterning, in which certain muscles around a joint ‘switch on’ when they shouldn’t and then inappropriately work way too hard, can often ‘pull’ a joint out of place. The joint then also becomes easier to slip out, of course, if it is more lax in the first place. Muscle fatigue, spasms and stress can all play a part in this too.
• Impaired proprioception: Proprioception is the body’s ability to sense position and movement within joints and enables us to know where our limbs are ‘in space’ without us looking. It relates to coordination. Impaired joint position sense can cause joints to slip out of place.
• Repeated overstretching: Otherwise known as too many ‘party tricks’. I know many of you guys have the capacity to ‘amaze’ people with your ability to wrap yourselves into weird and wonderful positions that the rest of us gawp at. You know, those tricks you did as kids, popping your shoulders in and out of joint, or folding your legs over your head? Well, stop – it’s no good for you! Repeated overstretching to that degree will only exacerbate the laxity and the chances of the joints slipping out of place. I’m certainly not saying that you should never do stretches, but I am saying give up the party tricks and don’t stretch your joints way beyond ‘normal’ range. Just because the joint ‘goes there’ doesn’t mean you should take it there. So please forget about that career as a contortionist with Cirque du Soleil.
• The shape of your joint surfaces: Some of you may be born with shallow-shaped joint sockets or other bony shaped ‘anomalies’ that predispose a joint to possibly slipping out of position more easily. Unfortunately, that just may happen to be the shape of your skeleton.
• Traumatic incident: One of the most common reasons for a joint to come out of place for those of us without EDS. Traumatic incidents can happen to anyone, but your extra joint laxity may actually work a little in your favour with this one; it may prevent you damaging some of your ligaments/tissues in the way that a non-hypermobile person who suffered a traumatic dislocation probably would.
How often can these subluxations/dislocations happen, I hear you ask? The answer to that is different for different people. Some people get them maybe just once or twice a year, others once a month. Some people get them once a week and others once a day. Some people get them repeatedly throughout the day and in some people they never seem to stop. Either way, we need to try to reduce the frequency if we can, and manage them when they do happen.
In some people, the joint just finds its own way back in to place, and phew, what a relief. But in others, once the joint slips out, it won’t go back in again. The pain kicks in (often big time) and the most common and perfectly understandable reaction is… PANIC! At this point, some people pick up the phone and call for an ambulance – well actually they don’t; they’re often writhing in agony or they can’t actually pick up the phone especially if its their shoulder or wrist out of place, but someone else does – and off to A&E they go.
BUT WHOA THERE! STOP FOR A SECOND, DON’T PANIC, BREATHE NORMALLY AND STAY CALM!!
Panic causes more stress and more muscle spasms. Stress and muscle spasms cause more pain, and then there is less chance of resolving the dislocation. Easy for me to say, I know, sitting here with my joints all lovely and located without the associated agony. But trust me, if you want to start managing this situation and taking control, then this is what you’re going to have to begin to practise. Because what happens at A&E? Well, if they aren’t already fed up with you turning up 100 times a month and starting to get all ratty towards you – not fair I know – they will often give you pain relief of some sort (perhaps Entonox) or they may go the whole hog and give you a general anaesthetic. Then they’ll yank your joint back into place. All good, right? Not so, because often, maybe within minutes, the joint will pull itself back out of place again because of the muscles still spasming around the joint, and you’re back to where you started.
So what else do our A&E docs then sometimes do? They stick you in a plaster cast to ‘hold’ the joint in place. Imagine, then, the battle going on underneath it – your joint trying to pull itself back out of position again while being forcibly held in place by the cast. Sounds painful to me, and often is – and when then do you take the cast off? This doesn’t sound like a viable management solution to me or a good way of life for you.
So what should you do if your joint comes out? Here are the 6 key principles that I suggest you need to start incorporating in order to begin to get a grip of managing this situation as opposed to this situation managing you. The main aims are to stay calm, keep on top of the pain and allow the muscles to relax. It takes lots of practise and patience, but it can be done.
1. Breathe : Use slow deep, relaxed breaths. Try using some relaxation techniques, there are lots of different ones out there. As painful as it is, and as difficult as it may sound, you need to start to try to take control of this situation. So start to learn how to breathe through it.
2. Use Painkillers: Oh yes! I’m not a monster you know; I know how painful this situation can be. I’m not for a minute suggesting that you should just sit there and ‘suck it up!’ For goodness sake, take some appropriate painkillers (analgesia) if you have some. However, note the word ‘appropriate’. You should only ever take analgesia according to the dosage indicated by your prescriber. Never take more than the suggested dose. You might feel like it may not be enough at the time, but if it can take some of the edge off, then that’s a great start. Please don’t ever overdose.
What about Entonox (commonly known as gas and air) as pain relief? I am aware that some people have access to Entonox at home, or use it at A&E. There can be a role for it, but this must be used with caution. Prolonged use can lead to vitamin B12 deficiency and can interfere with DNA synthesis, not to mention cultivating a dependency, which are all big issues.
3. Support the joint: You need to try to make yourself as comfortable as possible (I know it’s not easy). Use pillows or a sling of you have one. Find a comfortable resting position as much as possible. This allows the muscles to relax and stop spasming.
4. Try heat: Hot water bottles, wheat bags and a warm bath can all help to relax spasming, overactive muscles.
5. Distraction: Try to take your focus away from the pain and the situation. Listen to music, watch a film if you can, talk to friends/family, try a relaxation CD/MP3. This can be helpful as a short-term pain relieving strategy. Again, it can help muscles relax.
6. Gentle massage: Sometimes gentle massage around the joint can help relax the muscles enough to be able to gently re-locate the joint or for the joint to just slip back into place by itself.
What if it doesn’t go back, I hear you scream (and I do hear you scream)?!
Don’t expect the joint to go straight back in. It is often not unusual for joints to remain out of place for hours or even days. But once it’s out, it’s out. It’s not going out even more, so try not to panic.
Isn’t it dangerous though? What about damage? Am I damaging my joint if it comes out?
It is highly unlikely. Your joint laxity allows for your ligaments and capsules to stretch. It is mostly just distressing as opposed to damaging.
When should you go to hospital or get help?
• if the limb starts to change colour due to a lack of blood supply
• if your limb goes completely numb
• if you have tried strategies 1-6 above, have waited a reasonable amount of time, and are still desperately struggling.
But as mentioned earlier, it is not unusual for A&E to relocate your joint only for it to pop straight out again or when the anaesthetic wears off. Therefore you need to learn to stay calm and to start to self-manage.
One of the most valuable things you can do after a subluxation/dislocation is to reflect on the event once you have had a chance to calm down. Were you moving in a way that normally causes the joint to dislocate? Did you move without thinking? What was your posture like? Were you tired or overdoing it? Were you stressed about something? It is so valuable to look for triggers as to why the event may have happened. It may have been none of these reasons, but if it was, then you can hopefully learn to avoid repeating them in the future.
Finally, prevention is better than cure! It is obviously better if we can prevent these situations occurring in the first place as opposed to having to deal with them. To that end, the following can hopefully help to reduce the frequency of such occurrences:
• physiotherapy to learn to control the muscles around joints and to use the right ones
• rehab to improve proprioception
• the possible use of supports/braces if required
• trying to manage stress and anxieties.
But ultimately, stay calm! The more you stay calm when these events happen and manage it yourself, the easier it should get each time.”
This is a great description from Lisa of what a spinal fusion is, and she should know as this is her fifth!
“Four Months since Major Back Surgery – How am I doing?”
April 23rd was four months since I had my fifth spinal fusion. I have to have fusions due to having Degenerative Disc Disease that is constantly crawling up my spine and causing it to give me great amounts of pain. How am I doing and is there any changes since the surgery? Was this fifth…
Photo from Buzzfeed
I have another link for you this week which examines how distraction, particularly through the arts, can help to manage symptoms of chronic illness. This could of course be construed as a sweeping statement and I am certainly not saying that every chronic illness can be tamed by use of artistic means. I am certain that those of us with chronic illnesses will readily say that our own conditions vary from day to day, some from hour to hour, and that relief and the methods to get that relief are variable. In other words, conditions are individual and we certainly are.
I have written about British actress Cherylee Houston before. She is in a long running British soap opera, is a chronic pain sufferer, wheelchair user and is the ambassador for Ehlers Danlos Support UK. In this BBC Radio 4 programme she sets out to meet other chronic pain sufferers and to learn how the condition impacts upon their lives, their work and how they use creativity to help themselves. Is pain always a negative experience or can it actually enhance creativity?
Many of us bloggers use writing as a creative way in which to help our own situation – this may be through connecting with others, supporting others in similar situations and reaching out for support ourselves – but more often than not actually writing about our experiences and feelings is a cathartic experience in itself.
Nearly everyone will be able to identify with some part of this programme and I hope that you find it inspiring. Enjoy!
Further reading : The Pain and Performance Artist Martin O’Brien – an essay
Photos from Google Image search
Today, You beat me,
I woke with You again
Wrapped about my back like a lover,
Pulling at my limbs
My shoulders splayed
My joints pulled with gravity.
Today, You never let up.
I tried to lose You
But You brashly force out the monster,
The worst version of myself
Cross and bitter,
My loved ones suffer.
Today, You rob me.
My time is destroyed,
I cannot sit and idle in peace
For my body betrays me,
As you are with me
Within, trapping me.
Today, You beat me.
My body is weakened
And tears have fallen as spirit breaks.
So, so tired, no way back
I am bereft.
Pain, You have won.
This is a re blog of a post that Esther on Life in Slow Motion wrote in 2014 when she was starting her blog. It is a great piece of writing describing what so many of us with chronic pain experience with friends, family & strangers – but Esther looks at some ways that we “chronic” bunch might be able to help others to begin to understand the difference between chronic and acute pain.
“Many communication barriers exist when it comes to describing chronic pain to family, friends, and other interested and uninterested parties. It has been said time and time again – something about chronic pain defies description. And if you are like me, you begin to dread those instances when you are faced with explaining your situation to healthy individuals who inevitably won’t truly understand.
In the midst of chronic pain, few things are more frustrating than taking precious time and energy to go into the details of your pain, only to be met with unsolicited advice, vaguely related stories, and various other responses that miss the mark of what you just so honestly and personally shared.
We all have stories of being hurt or misunderstood. Conversations seeking to explain our chronic pain so often go awry, bringing increased confusion instead of clarity.
Likely there are many reasons for this. At times there is an unwillingness to honestly share and a hesitancy to carefully listen. The subjective nature of pain is much better described through metaphor and art than everyday conversations. At times people are unempathetic, make unkind assumptions, or even completely disbelieve you.
Yes, these reasons are definitely culprits, but I do not believe any are the main culprit, the main reason, or the underlying thread that leads to the most confusion……….”
Read the complete article here:
It is always interesting to those of us with chronic pain when a new pain killing device comes onto the market. With so much metalwork and a spinal cord stimulator, I would probably be limited as to where this device might be useful, but Zec’s positive review on Sat on my Butt sounds like it could be worth a go!
“I have been sent a PainXit – TENS machine from designed2enable, simply put it is a portable TENS device to help combat pain.
I have a full size TENS machine and I have used it for many years, it doesn’t help with all of my pain but I know when it is likely to help and when it isn’t. I also have a similar pen device that contains a piezo crystal and delivers a shock when you click the button but I have never found it to be much help.
The PainXit – TENS machine is powered by a AAA battery and delivers a 1000 w at 0.4 mJ , now I know that sounds scary but believe me it isn’t.”
Full review can be found Sat on my Butt
Taken from Pain News Network
By Alessio Ventura, Guest Columnist
“I am a chronic pain sufferer who recently had multiple emergency surgeries due to sepsis infection after a shoulder replacement.
I have had 17 surgeries since 2008, including major back surgery, rotator cuff repair, biceps tendonitis, knee surgery and hernia surgery. Bottom line: my body is now wracked with arthritis and post-surgical pain.
I have tried several pain treatment modalities over the years, including Lyrica, Cymbalta, chiropractic, injections, NSAIDs, and acupuncture. The only effective treatment in my case has been the legitimate, professional application of opioid medicine by pain management physicians.
I have severe allergic reactions to NSAIDs, which kill 15,000 per year and send 100,000 to the hospital. A friend of mine died from a stroke because of NSAIDs.
After my recent surgeries related to the shoulder replacement and subsequent infection, my wife had to travel to 25 different pharmacies before she finally found someone willing to fill my scripts for Oxycontin and Percocet.
This is not unusual though. Each month is a long trek to find pain medicine. What has happened due to government restrictions on opioids is a reduction in the supply of opioid medicine. The drug companies see the writing on the wall and are slowly trying to get out of the business.”
Remainder of article may be seen here: https://www.painnewsnetwork.org/stories/2017/3/13/it-is-time-for-chronic-pain-patients-to-act
Disclosure: “I have been given a “Cosy Cushion” Pain Relief Cushion as part of a product review. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.”
When we have pain the natural thing to do is reach for something to give us some comfort and hopefully in the process reduce the pain….or get rid of it! This goes for a toddler falling and bumping a knee, to a broken bone, to labour and childbirth, to post operative pain. Fortunately these pains are usually short lived (yes, I know that some labours go on for days, ladies) and will become a memory. Not so chronic pain, which by definition is pain that has been regular and ongoing for over 6 months.
For most of us living with chronic pain, we have had to find our own methods to help to ease the symptoms in conjunction with drugs and medical intervention. My back and leg pain is caused by nerve root damage, and I have always found heat to be one of the few things to offer me any relief. So I was really pleased when Pain Relief Cushions gave me the opportunity to trial and review one of their wheat and lavender cushions.
Pain Relief Cushions state that their mission is to “provide freshly filled cushions at point of order” and that “the same cushion can be used hot or cold”. The cushions can be heated in the microwave or will take heat from a radiator in order to “give a gentle, penetrating heat which goes deep into the muscles, eases and relieves pain”. They can also be kept in the fridge and used for cold applications such as swellings and sprains. The company is approved as a member of The Guild of Master Craftsmen.
I requested a long cushion to use across my lower back and down the length of my leg, but the cushions come in several different shapes and sizes to suit differing needs. It arrived well packaged with a covering letter, a flier describing the product range and care instructions, and a separate insert with care instructions for the heating and freezing of the pillow. The pillow is completely natural – the cover is luxurious cotton velvet, available in a selection of colours, and the filling is wheat and optional lavender.
I did opt for lavender and this was the first thing that I noticed on removing it from the packaging – a very pleasant change from some of the less sweet smelling similar products I have used before. However, the teens in the house did not like the lavender smell, which initially becomes stronger upon heating – personal preference, I guess, as my husband and I both liked it. The bag is well labelled with clear heating instructions and power settings for your microwave – an average time being 2 minutes. The care instructions are easy to follow explaining the importance of bunching up the bag, that the microwave plate must be freely spinning and that a new bag might feel “damp” the first couple of times that it is heated. Likewise the instructions for cooling/freezing are clear.
I have been using the Pain Relief Cushion daily for approx a month now and have been very happy. When sitting I regularly use an electric heat pad but as this is plugged into the mains, it is not always convenient to use. This is when a microwave heat bag really comes into its own, and whilst I have used similar products in the past I found this wheat bag to be superior in quality. Before I have found that wheat bags have not stayed warm for as long as my trusty cherry stone heat bags, but the Pain Relief Cushion does stay warm for a similar time span and is well made. Remember I use it daily and heat it several times a day, so it is very well used.
I cannot claim that it gets rid of my nerve pain, but it certainly helps to ease it. It has also been very helpful for the Ehlers Danlos join/soft tissue pain that I have all over my body – it was particularly good for my neck and regularly dislocating shoulders! The pictures were taken on a “popped” hip joint day. For those of us with monthly cramps, it is a great safe alternative to a hot water bottle! I personally haven’t used the cushion as a cold compress.
The only piece of negative feedback came from my daughter with regards to the packaging. She commented that in her opinion the flier would attract younger people to the product with a more contemporary, clean look – she is naturally artistic with an eye for graphic design.
From the time that I have used my Pain Relief Cushion, I would definitely recommend it as an aid to pain relief and will continue to use mine.