Living with pain
Pain is something I’m all too familiar with, I live in constant pain on a daily basis and I can’t tell you what it’s like to be pain free anymore. Looking back I’ve lived with pain to some degree my whole life. I take medication to manage my pain but it only brings my pain down to a manageable level to allow me to function each day but even then I am limited and still in some level pain.
Pain comes in many forms: spasms, cramps, neuropathic symptoms like intense tingling, headaches/migraines, gastrointestinal pain, stiffness, torn ligament pain (often following a dislocation), sprains, acute pain the list goes on.
People don’t think that Hypermobility Spectrum Disorder (HSD) is as complex or “serious” as Hypermobile Ehlers-Danlos Syndrome (hEDS) but people like myself with HSD can have just as many complications as seen in those with hEDS.
As well as chronic joint pain exacerbated by regular subluxations and dislocations I have problems with my organs too. Like with EDS my connective tissue is to stretchy which is problematic itself. I have problems with many organs including my gastrointestinal system and which results in pain and also my bladder which I get a lot of painful spasms with too. I also have problems with my dysautonomia and I’ve developed a secondary condition called PoTS (Postural Orthostatic Tachycardia Syndrome).
Due to my HSD (and other illnesses) I have to use a wheelchair to get around. This helps with my pain and fatigue levels and is much safer for me as it reduces my risk of falls.
Pain is something that is hard describe, especially chronic pain. Most people are familiar with the pain of a stubbed toe or maybe a broken bone but when you are relentlessly in pain throughout your whole body it is completely something else.
Being in constant pain not only affects me physically through my limitations – having to be careful for example due to the risk of exacerbating my pain or causing a joint to subluxations/dislocate. It also affects me emotionally and wears me down; there are many times when I have just cried because of how relentless my pain is. Then it [the pain amongst other things] affects you socially. Many plans get cancelled or cut short because my body just simply has other ideas and seeing a friend even at home would be too much for my body to handle.
Coping with pain and fatigue
Dr Chad Shepherd & Dr Netali Levi presented at the 2017 residential conference, talking about how psychology can help in the management of pain.View the presentation
I’ve learnt to live with pain and when my pain levels are high often I’ve found that when I give my pain score I’m not as well believed because I’m not screaming. I’ve learnt that the best thing to handle my high levels of pain is to distract myself. So say for example if I’m in hospital and I’m needing some high dose pain relief I find it better to plug into my headphones and listen to a book whilst I wait for my medication. Occasionally I may cry but not often as that does little to alleviate the pain just as much as screaming does.
I wanted to end this on a positive note as much as I can do when it comes to chronic pain. You can learn to live with pain and HSD and there are many things out there to try. Everyone’s “pain toolkit” is different and what works for one person may not work for you and that’s okay, it’s just a case of learning what sharks for you. For me yes medication does help but I’m a big believer in non-pharmaceutical alternatives to go alongside my medication. For example gentle movements, my TENS machine, a hot bath, relaxation, meditation/mindfulness, distraction, grounding myself amongst other things. I’ve also found pacing helps and setting a timer on activities so I don’t overdo it and crash. I personally have a set schedule for the day alternating between activity and rest periods with times for meals, getting ready for the day and doing my main bit of physiotherapy and having this routine helps (I devised this with my Occupational Therapist). Getting a good nights sleeps helps too.
When you’re in pain and it seems never ending remember the time when you pain has been at it’s worse and even though it was really hard you managed to get through it. H.O.P.E: Hold On Pain Ends. If you are struggling with pain speak with your doctor such as you GP or consultant as there are things that they may be able to do for you whether this be medication or making a referral to a pain clinic or for physiotherapy. You don’t have to struggle alone.