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Pain Management blog by Hope Simpson – Youth Reporter

Posted By HMSA Social Media Coordinator, August 28, 2018

Pain management

 

Pain has been an unfortunate factor in my life now for many years, in many forms and I know this is a common symptom of any chronic illness, yet one that can sometimes be the hardest and most complicated to treat. The first step for me when I’m particularly struggling with pain, of any kind, is to try and figure out where the root of the discomfort is coming from. Have I been doing too much (exercise, physio or even typing work with my hands) do I have a cold or virus that could be contributing, has the weather temperature drastically changed? All of these help me figure out what I can do indirectly to help my aches, resting, not using my hands and wrists as much as I can and making sure I’m regulating my temperature. My symptoms do get much worse in the middle of summer and winter due to the rapid changes and extreme heat and cold. Once I’ve done this I can move on to “stage two” of my pain management and more directly tackle the problem.

 

A time when I struggled tremendously with pain was during my GCSE exams last year, while I had many supports in place and was sitting them at home with extra time I still found this a huge strain on my body and had to search around for as many remedies as I could, to get me through. I did type all my exams which was much better than writing, something I never could have managed to do, however this still put a lot of strain on my wrists and hands which led to frequent subluxations and discomfort. To combat this my physio suggested splints for my wrists while typing as this would prevent them from having to work so hard, she also had the idea of positioning a pillow under my arms so I didn’t have to hold them up on my own. This made a huge difference and if I’m having a particularly bad pain day now it’s something I still use. Hot/cold packs have been and still are one of the best inventions for dealing with pain! Simple but effective and something you can just keep in the freezer/pop in the microwave and have them ready when you need them. They’re also great to help warm you up/cool you down and are especially amazing in the summer and winter months during the more extreme temperatures. Having a hot bath can also help in the cold, I’ve started making and using little bath salts which while may not provide much relief (too soon to tell) but definitely smell good and are always prefect to pamper yourself with on a particularly tough day. Finally on my list, a TENS machine, it’s something that while, not for everyone, has helped me a lot with lower back and hip pain. As I’m not the most scientific I’ll attempt to explain it in my own words, for me it’s like a steady pulsing sensation coming through little pads attached to your skin near the affected area. It provides distraction and something other than the pain to focus on, I tend to use it while watching a favourite film to help distract, which indecently brings me to my next point.

 

Distraction is the biggest one for me, something I used back when struggling with CRPS (complex regional pain syndrome) over five and half years ago and that I have used to combat pain connected to other illnesses ever since. Watching a film, talking to a friend, using a TENS machine, music, stroking my dog, working on a project, these are all ways to distract my mind away from the intense pain and into living my life. They don’t always work and for extreme pain attacks I mostly have to just breathe until it’s over, but day-to-day finding the things that take your mind away can be a help.

 

My final point within this piece is to highlight the fact that all pain is valid and should be treated as such, it isn’t a competition of who suffers the most but rather, what we can do to help one another in our individual journeys. You should never feel as if your being “overdramatic” pain is pain and at the end of the day no one should have to deal with it, but we do and so we find ways of easing it, for ourselves but most importantly for others.

 

Congratulating Dr Alan Hakim on his appointment as Director of Education with the Ehlers Danlos Society

Posted By HMSA Social Media Coordinator, August 2, 2018

We would like to congratulate Dr Alan Hakim on his appointment as Director of Education with the Ehlers Danlos Society. This will benefit the hypermobile community greatly as he works to improve expertise among medical professionals worldwide. This new role means that Alan will have to step down as our Trustee and Chief Medical Advisor but we are very pleased that he will continue as one of our medical advisers. Dr Philip Bull replaces Alan on the Board of Trustees.

We would like to say a big thank you to Alan for his work with the HMSA so far over the last 15 years. We all know  that Alan is always supportive and incredibly positive. He is largely responsible for the HMSA’s excellent website and wrote the majority of the medical content, keeping it up to date, enabling the HMSA team to achieve Information Standard accreditation. Alan has supported the development of our ongoing professional teaching programme with Donna Wicks (CEO) and her excellent team, and has helped to ensure that we lead the way in running programmes such as the residential weekends for patients and information days.

He has championed the positive ethos of the Charity, with the need for people to be given the skills of self management and to be able to work with their medical and health professional as informed partners.

The Charity now has an international reputation for it’s work and Alan worked hard within the team to ensure this outcome was achieved.

This new appointment as Education Lead with the ED Society will allow many more health professionals to be reached and will be of mutual benefit to the Charities as we move forward in synergy.

Please join us in sending Alan our best wishes with the new appointment, and thanking him for his ongoing support and input into the HMSA.

Rob Smith Chairman

Donna Wicks CEO

Dr.Philip Bull Trustee and Medical Adviser

Hannah Ensor, Trustee

Fatigue help please!!! #HMSAanonQ

Posted By HMSA Social Media Coordinator, August 1, 2018

I am really struggling to cope with the constant fatigue.

Have you got any suggestions on what I can try to help please? 

 

HMSA Answer: Fatigue is a common and often disabling finding in many musculoskeletal conditions. It is a very common concern in hypermobility disorders. Those with this type of fatigue will know that it is much more than the tiredness experienced after exercise or a busy day at work; it is often an overwhelming lack of energy that may appear after even the most minimal activity.

The cause for such profound symptoms is unclear and may be related to pain, autonomic dysfunction, and poor sleep patterns and sleep quality. Addressing these issues may help relieve the severity of the fatigue.

Having good sleep hygeiene routine in place, such as a good bed time routine, bluelight filters on your smartphones/tablets, hot bath before bed can help with getting a better quality of sleep. Pacing your day can be a huge benefit too. Too many difficult tasks in a day can drain you so making sure you swap with easier tasks and rest breaks in is important. Relaxation/meditation techniques can also help. You can also find a guide to fatigue in our online shop for a lot more in depth advice here

 

Do any of our followers have any great tips that helps reduce your fatigue? Let us know in the comments on our Facebook page 🙂 

Tips for Carers by Sophie Harvey

Posted By HMSA Social Media Coordinator, July 28, 2018
Being a carer can be tough. It’s hard to see someone you love suffer. I have been in the situation of both being a carer and a patient, so I have experience from both sides. I have learnt some things along the way and these are the things that I have found most helpful for me. 
 
One of them, is having something to just take my mind off caring for a bit, a way to recharge. For instance, a distraction like a hobby, sport, seeing a friend, or disappearing into a good book. Carers take on a lot of responsibility, so I think enjoying and engaging in things that can take my mind off caring for a while is important. I am of more use to the person I am caring for when I am recharged, rather than when I am exhausted or emotionally drained.
 
Another thing I have found useful for me is researching the condition. It can be scary seeing a loved one in pain and not knowing why it was happening or what I could do about it. However, researching the condition and understanding why things were happening and what sort of management techniques there are, helped take some of the distress and worry away from the situation.  
 
It was also vital for me to know that when the person I care for is grumpy or angry, the majority of time they are not angry or grumpy because of me. They are grumpy or angry because of the symptoms. I try to know when it’s the person talking and when it’s the symptoms talking.
Similarly, even though the illness is a big part of their lives, I try to see the illness and the person I care for, separately. I know that they are still just a person and try to talk about things other than illness and quality spend time together. Even if it’s just watching sitcoms together. Being a carer can be very serious, but I try to remember to laugh and not take all things so seriously all the time. As corny and as cheesy as it sounds, ‘Laughter is the best medicine’. I try to remember that and to spend quality time with the person I care for despite the illness.
When the person I care for is going through a rough time I tend to worry about them. However, when that happens I try to ask myself ‘What can I do about it?’. It’s a way of reducing the amount of worrying I do because if I know I have done everything in my control to help them, I am doing all I can. I can’t cure them but I can care for them. Sometimes the answer to my question ‘What can I do about it?’ simply means I could send them a message with a joke in it to cheer them up before a medical procedure, or make them a cuppa, or give them a hug when they’re having a rough day.
 
Other times when I don’t know what to do, I ask ‘How can I help?’. Even if the answer comes back ‘Just leaving me to rest’ asking that question makes me feel like I am doing everything within my power and control to help them, and that reduces the amount of worry I have. I am doing the best I can.
 
Listening is one of the most powerful and useful things my carer does for me. Just knowing they’re there for me makes a massive difference. Equally, when I put my carer hat on, having someone to listen to me and talk things through with is helpful in the same way, too.
Knowing that it doesn’t have to all be on my shoulders has also been important for me. Asking for help has been vital. Whether that’s asking for help from friends, family, neighbours, or professionals. Also, simplifying life a bit like occasionally, doing online grocery shopping, buying pre-cut veg, ready-made food, or asking someone to help with housework can help to take the strain off for a bit. It doesn’t always have to be all on my shoulders and I can ask for help if need be.
 
In addition, not being afraid to talk things through with the person I’m caring for is important. I used to avoid it because I didn’t want to worry them but just because they’re ill doesn’t mean I can’t talk to them about things. They know the situation and can help.
 
Letting at least one person at school or work know that I’m a carer has also been useful. This is because if something came up for example, if I missed a deadline and required an extension because I had to do something carer related, then they knew why. It saved me from having to explain it all from the beginning when something cropped up.
 
In conclusion, know that you are not alone, you’re doing your best, remember to laugh, enjoy life and ask for help if you need it. Also, keep going, you are doing so well.

HMSA announces Dr Phillip Bull as a new Trustee!

Posted By HMSA Social Media Coordinator, July 6, 2018

‘It is great to welcome Dr Bull to the board. His governance experience and knowledge base developed throughout his NHS career will be a significant benefit for the HMSA, as it moves forward with its plans for the next 5 years. Fantastic news!’ – Donna Wicks CEO

Dr Philip Bull, FRCP

Dr Bull trained at St Thomas’ Hospital Medical School and then undertook senior specialty training in both Rheumatology and Acute Medicine at a Westminster and Charing Cross Hospitals. He worked as Consultant Rheumatologist at East Kent Hospitals University Foundation Trust based at the William Harvey Hospital from 1990 to 2014. During that time he developed a major interest in joint hypermobility and also held a senior management role as Clinical Director for medical services from 1994 to 2010.

Dr Bull has brings  his particular experience in hypermobility spectrum disorder and service development as Deputy Chief Medical Advisor to the HMSA. With regards to his clinical practice ( private) these include two rheumatology clinics , at the ‘One Hospital’ in Ashford  and  also ‘The Chaucer Hospital’ in Canterbury.

Dr Bull is also involved in medical education , running a rheumatology syllabus for East Kent Hospitals  medical students and junior doctors as well as local GP’s , health professionals and patient groups.

Dr Bull is the clinical lead  for the Kent Hypermobility Network and works on a voluntary basis for the HMSA and also, as a hospital governor for East Kent Hospitals. He has a particular interest in the Alexander Technique and Mindfulness.

In his spare time , Dr Bull plays bass guitar in an acoustic rock band.

Dr Bull joined the HMSA’s medical advisory board in November 2016.

 


Disclaimer
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.
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