Ehlers-Danlos Support UK
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Granddaughter has heds confirmed

Hi We have just had confirmation ( 6 days ago) that my granddaughter (9 y old). has heds . We went private in the end as we were just going round in circles before. They told us that some of the meds’ prescribed for her ( morphine ) she should not be taking as this can cause more symptoms for her.

The consultant is writing to her doctor and the hospital to try and get things sorted, unfortunately she has injured her wrist and fingers, bouncing on her bed, kids will be kids. But we don’t know what the best pain relief is for us to give her, is it best to see a pharmacist ? We are now coming to terms with this diagnosis and realising this is going to be for life, so need to be careful what we do, any advice.

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Yes, morphine has been thought to make things worse, not better. It is good for acute pain, say after surgery or cancer pain, but not good for long term pain.

A pharmacist is a good start for pain relief, but there are other things too. And it might be good to get her started young in following this path. This is from Dr Franocomo who is an EDS specialist in America:

"Dr. Francomono’s 75% Plan for Pain Relief. "Take, for instance that your medications take care of 20% of your pain relief. Then you use your TENS unit for another 10% reduction. Some Tiger Balm on your painful joints brings another 5% of pain relief. Maybe you could pull out your heating pad too for another 5% of pain relief. Then you decide upon a warm soak with Epsom Salts for another 10% pain relief. Deep breathing and some PT exercises combine for another 10% of relief. And then you watch a great movie for another 15% of pain relief. So now you have 75% of your pain managed effectively. How would your days be different if 75% of your pain was gone? Dr. Francomono’s plan demonstrates the importance of using multiple strategies…even if each one only makes a tiny difference, the difference made when they all are added together is significant.”

So for a new acute injury, ice and rest to bring the swelling down, then paracetamol and ibuprofen plus distraction should be enough. You don't want her to be on the pain med conveyor belt for the rest of her life!

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Thank you, yes we have realised we will have to get some ice packs, we used frozen veg the other day which did the initial trick. We don’t want to wrap her in cotton wool but at the same time don’t like to see her in pain. We realise this is a learning curve for all of us involved , so hopefully we will have the distractions to hand next time. She already uses Epsom salts in her bath. Also bothered about the amount of school she is missing, she has managed so far to keep up with her school work. It’s hard to watch a child change from a bubbly ,outgoing , sporty type to subdued and a little introvert at times.

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Yes, it is very hard to watch. I watched my oh so very active son go from a toddler that looked like he had ADHD to a 12 year old that fell asleep after lunch. We have always home educated, so we were able to carry on with his education and his circle of friends, but if he had been in school I think we would have ended up home educating anyway, just to avoid missing so much school. At least now on good days he can do as much as he can and on bad days he can rest. He is better at pacing as he has control, not the outside system of school.

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Hi what is s the best tens machine to buy, have you any recommendations? I’m planning on going to the pharmacy to stock up on the things you have suggested can help with distraction, heat/ cold pads,tiger balm do you recommend any particular makes , please. We need to be proactive,otherwise we feel helpless. As you say don’t want her to be on strong meds’ at this age .

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I don't have any recommendations on the TENS machine, but I think if you talk to the people at the chemist they will be able to advise. I understand Lloyds have their own brand which is supposed to be good, and I think Boots do one too.

Tiger Balm comes in two strengths I think, and most chemists have it now, although originally I always bought it in a health food shop.

Don't underestimate the power of comedy box sets. After I had surgery on my foot which included some serious nerve damage that was more painful than the surgery, I found out that I couldn't take codeine. Watching the complete series of Green Wing with my son was the best pain relief I had.

My brain couldn't process all that was going on the TV and pain at the same time, so the pain lost out. And comedy is always better watched with people you know and love as you will laugh more. And laughter actually releases various neurotransmitters too that not only lift the mood, but also help with the pain.

They should send patients home after surgery with box sets rather than pain killers!

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Thanks for that, yes laughter can get you through a lot. She is staying with us for a few days so we will be doing things to take her mind off it but I must remember to pace things, I usually do things fast and get told off from the family. Seems odd me (nana) having to slow down for the granddaughter, wish I could have it instead of her. No good thinking like that I know, helps no one, but it stinks.

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I know what you mean about having to slow down for a younger person. So many times I have thought spontaneously 'let's do...' then realising that it was a bad idea.

So in some ways my son has taught me to slow down and take life a little more easily. It is okay to just sit in the garden and do nothing but watch the clouds go by. It is okay to watch more TV than is politically correct. It is okay to read comics if that is all the brain fogged brain is set up to do.

Just as there is a slow food movement, and slow radio and TV, sometimes it is good to pace ourselves and have some slow life too!

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Cheers for that, I’ll just wait and ask her what she would like to do rather than plan lots of things. Must remember that poem , what is life if we don’t have time to stand and stare. I’m going to look it up and print it out, thanks again. Take care.

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As a general rule, I would say aim for the pain medication which is the lowest strength that she needs to get through an average day. You can then keep the stronger pain meds in reserve for when things get bad. I try to stick to one or two Tramadol a day, supplemented with paracetamol, but everybody's experience of pain is different.

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