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Posted By HMSA Social Media Coordinator, March 13, 2016

Our last Pain Management blog for this month’s theme from Azra Irvanipour!

Pain management is a huge learning curve and always individual to the person. However, listed below are some things I have learnt along the way and aided me in times of need (which is a lot of the time).

Flare-ups and signs of them
A common issue of having a type of hypermobility is being achy almost all of the time, but an obvious sign of a flare up can be having the same persistent ache in a specific area. For example, I often have an achy back and hip, but I can usually tell when I’m going to have a particularly bad flare up if its in the same spot for a elongated period of time. This achy spot for me will then make me extremely lethargic and result in general all over body pain.

Here are some things I do to help this:

– Food and hydration
Making sure you are eating enough of well balanced, healing foods is extremely important in helping to battle lethargy and achy bits. Usually when in pain, the thought of making a meal seems like a mammoth task. Freezing food in preparation before a flare really helped me with this.

– Bath soaks
Soothing baths are made that much better when adding magnesium flakes. I found this largely helped muscle cramps, and generally helped me to relax.

– Breathing
Following the topic of relaxation and baths, breathing can play a large part in winding down and pacing yourself – deep, belly breathing (as opposed to shallow chest breathing). This is something that is largely overlooked; yet it has been one of the most helpful things in aiding my pain management. When in pain, we sometimes set ourselves up for ‘fight or flight’ and elevate our stress levels. Stress in my experience, exasperates existing pain, and has even been the catalyst to particularly bad flare-ups. Deep breathing can also help aid digestive problems related to mobility syndromes.

– Sports massages
Unlike relaxing spa massages (which are also helpful) sports massages are more vigorous and help to prevent or alleviate worsening conditions.

– Exercise (for stability)
If you see a physiotherapist there are usually exercises that can be shown to help you. Making sure you see a professional who is knowledgeable about your condition is key (this also applies to massage therapists and physiotherapists)! Hip belts (and other aids) can assist with certain movements as you progress.

IS disclaimer –
For more information and support, please visit . If you have a story or article to share please contact

Blog post by Debbie Hardwell – Pain

It literally is a pain!
We are all different in how we manage it and there is not necessarily a right way – it is what works for you. Medication is not always the solution; sometimes it is adapting how the mind and body reacts to that pain and learning to recognise to stop before falling down the hole and then having a big climb back out.

I am never sure if it is unfortunately or fortunately that for me, the only thing available to me is Paracetamol. I have intolerances to other pain relief. This has left me with the option of it being about how I manage the pain.
In the early days of my diagnoses, I was on a mission to fight the pain, and push through barriers, I would show it who was boss! But in reality this was not so, for all I was doing from this approach was exhausting myself and having several episodes of boom and bust.

Through my learning of Pain Management I have learnt to tap into the pain, acknowledge it and to accept it. Rather than push through, I will recognise what my pain levels are at and how much my body can cope with today.
I have always been a planner and that now helps me through. I look at what I’m going to be doing, how long can I do it for, and will it need several attempts. If I look at the garden as an example, I am unable to do to the bigger tasks, but give me a seat and some pots and I can sit and make them look pretty. It is even possible to sit and prune roses. Depending on how I’m feeling I may only do 10 minutes, another day I may manage an hour. You have to start listening to your body and tuning it to what it feels like it can cope with today. In the past I may have thought 10 minutes! It’s not worth it!, but it is worth it. Anything that encourages us to keep moving and to get enjoyment is always worth it. It also means you are not giving up – you can still live with pain and have a happy life.

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For more information and support, please visit . If you have a story or article to share please contact

Blog post by Lara Compton on Pain Management

I have hEDS, and despite having gained my diagnosis in 1999, it’s taken me a long time to get a grip on pain management, and I’ll be honest, I still don’t always get it right… But, part of effective pain management for me, has been to ensure I’m kinder to myself in all ways, particularly if I don’t make the correct decision at times!

So, how do I manage my pain? Of course there are some pain killers in there, but they’ve never really worked too well, and I get awful side effects.

Heat and ice work well, and you gradually learn along the way which is needed at what time.

Taping can help loads – but I learnt the hard way that your body can become over-reliant on it. So now I try to only tape for part of a day, partly to give my skin a break too. If a joint hasn’t started to become more stable within a week or so, I’d start to rethink the tape.

I have specialist massages with a lady who has lots of experience with hypermobility (although we still laugh about the first time she massaged me, and my shoulder subluxed afterwards!) This is one of the biggest pain relievers for me.

Lastly… We move on to the biggest element of pain management in hEDS. Pacing. I’m still not a pacing expert (hence the incorrect decisions at times!) but now I’m finally pacing myself properly, I am so much happier. I am enjoying my life so much more. There are still bad days/weeks, but I know they’ll pass, providing I pace!

I like The Spoon Theory a lot, but still think others find the concept hard. I recently wrote an article on The Mighty, where I described my pain levels like a bank overdraft. In a ideal world, I wouldn’t be into my overdraft at all, but most days I am. Some days, I wake up way over my overdraft. Pacing is all about decreasing your overdraft level. It is much better for me to stay at a constant 30% overdrawn, than to spike up and down, and end up 330% overdrawn. Life at 30% gives me a much better quality of life. You never know, one day, we might even end up out of that overdraft into positive figures!

IS disclaimer:




Meet Sarah, our HMSA Blogger

Nice to meet you all, I’m Sarah, I’m the Northampton Group Leader and part of the social media team for the HMSA. I’m originally from Liverpool and ran a group there but moved to Northants last year. I’ve been volunteering for the HMSA for almost two years and I really enjoy it; I’m excited to start this new chapter and launch this blog.

The full blog can be found here:





#HMSAware blog post


The team are working hard to inform the public of various hypermobility syndromes; Marfan syndrome, joint hypermobility syndrome, Ehlers-Danlos syndrome, pseudoxanthoma elasticum, osteogenesis imperfecta and Stickler syndrome. We are myth busting and explaining the basics of bendiness; all can be found on our Facebook and Twitter.

Full blog post can be found here:





I’m sure you’ve heard this word hundreds, if not thousands of times before, and trust me, I’m sick of it too. But, once you realise and understand how helpful it is to pace yourself, you’ll find you do things a lot differently, and not suffer so much.

I’ll let you in on a little secret, we’re all bad at pacing (at the beginning), it takes time, effort and a lot practice to get to grips with it. I’m no master, I still find myself trying to push my limits on the odd occasion but there’s a voice in the back of my head that tells me I need to pace. I need to remember how I’ll suffer. I need to stop; stretch; do another activity.

Pain has so many adverse effects on the sufferer; lifestyle changes, mood changes, body, relationships – there’s a lot to deal with when living with chronic pain. The common denominator with chronic pain sufferers is that they tend to push themselves, they do too much, they don’t stop until they’re in so much pain they can no longer move, and then pay for it for days if not weeks afterwards. However, once the pain eases, the sufferer does the same thing, there’s no learning from the pattern; the vicious cycle of over-activity and intense pain goes on and on and on….

Sarah’s full blog post can be found here:




HMSAEAMEDS Awareness Month

May is EDS Awareness Month.

I’ll be flying the zebra-striped flag and telling anyone that will listen about EDS – no change from any other month, but since we have these 31 days dedicated to EDS, it’s best to use them wisely, to shout it from the rooftops etc.

EDS Awareness month is to not only raise awareness but to educate, so please do try and get involved. Even if it’s sharing something from the HMSA Facebook page or writing a tweet using the hashtags‪#‎EDSAwarenessMonth‬ ‪#‎MayWeSay‬ – the more it’s talked about, the more awareness is raised.

Keep a look out on the HMSA Facebook and Twitter

EDS Awareness Month blog post – Sarah Wilson

The information provided by the HMSA should not take the place of advice and guidance from your own health-care providers. Material in this site is provided for educational and informational purposes only. Be sure to check with your doctor before making any changes in your treatment plan. Articles were last reviewed by our Medical Advisors as being correct and up to date on 5th June 2004.

Please be aware that information posted on the discussion boards is the opinion of the authors and has not necessarily been approved or endorsed by the medical advisors.