Living with Ehlers Danlos is never really easy, for me it involves a lot of different aches and pains. This can be anything from stomach pain, to joint pain, to non specific widespread chronic pain and anything in between. I try to avoid heavy opioid painkillers like tramadol and morphine as best I can for a few reasons. Firstly they make me terribly drowsy and unable to concentrate, preventing me being able to drive and taking away some of my independence. Secondly they slow down my bowel even more than usual and can increase my nausea. Last but not least they are addictive, my body gets used to them and after a while they don’t work anymore but my body is convinced they’re still doing something. This is not me saying don’t take them or passing any judgement, it’s just what I’ve found in my own case. Plus I still use them if I dislocate a joint or in any other short term extreme pain cases. This means I’ve had to find alternative treatments, therapies and remedies to get me through.
Heat pads etc
My main lifesaver recently has been using a variety of different heat pads, wraps and water bottles depending on the location of the pain.
I have two different heat wraps; a shorter one that can either cover my lower back or stomach and then a full back one that goes right up to my neck. They plug into the wall which unfortunately means you can’t walk around in them, however they do stay warm for a long time and you can just velcro yourself in and out when you need to move. The full back one I got in Lidl for £14.99 which was quite a bargain. I find it a bit more uncomfortable to sit around in than the smaller one, but if my whole backs aching it’s much more effective.
As I can’t really go to bed plugged into the wall I have a standard hot water bottle I use on my stomach when things are bad. It’s in a tigger teddy cover to prevent me burning myself, though most of the time I feel like I’d be better just boiling my stomach alive the pain is that severe.
Lotions and potions
I think I’ve pretty much tried every single pain relief cream and gel that is out there, everyone is different and reacts differently to them, but these I’ve found are the most effective for me personally.
1. Tiger Balm – available from most pharmacies and some super markets. There are a few varieties but I use the red ointment. It is a natural pain relief remedy made up of camphor, menthol and other ingredients used to help treat muscle aches and pains. Not a miracle worker but I find it works a lot better than the other natural, over the counter balms out there.
2. Biofreeze or deep freeze. Alternating between hot and cold treatments for pain is supposed to be more effective than just using one alone. In combination with applying heat, this gel works to cool and soothe aches.
3. Deep Heat spray – the opposite of the biofreeze. It warms up the painful area, however, it really stings my skin after a few applications. If you have sensitive skin it might not be for you.
4. Volterol – I find this only really works well on my shoulder. It comes in different strengths so I always ask the pharmacist for the higher one.
5. Nurofen medicated plasters – these are ibuprofen containing pain patches. As my stomach can’t handle NSAID’s such as ibuprofen, I find these a stomach safer alternative. Only downside is that they can only be worn for a few days at a time. They also can’t be used in combination with the volterol so I tend to alternate.
Box of braces
Depending on the joint that is in pain, I can be 90% sure I have a brace to hold it in place and help it heal without me hurting it every time I move. From ankle to shoulder I’m pretty much covered. If I don’t have a brace for it there’s always kinesiology tape to strap it up, this is usually saved for back and hip pain/injuries.
The tens machine is a small battery operated device that sends electrical impulses through small sticky pads (electrodes) that you attach to your skin in the painful area. You can increase and decrease the frequency to different amounts to find what works for you. The tens machine can vary with the number of sticky pads, mine has four. I’m not 100% sure how they work but according to the internet they interupt and reduce the pain signals travelling to the brain and spinal cord, reducing the amount of pain you feel. It does tingle and feel funny on your skin but it definitely does something to reduce pain levels in me.
I wouldn’t say any of these items work miracles, but if they can each reduce my pains by 5% that’s 5-25% less pain. This may not sound like a massive amount but with a combination of all the above I can really get on with my day so much better. If it saves me from having to take my morphine and be a zombie, I’m pretty happy.