CHRONIC PAIN: EDS

[Sooverthemill]

Any ideas for pain relief ( other than actual prescribed medication) for EDS? My DD is struggled frankly so am I. We are trying to get a consultation but that's hard as she cannot travel and talking on zoom is also difficult. Anyway, anything that has helped the pain and joint specific pain ( knees, hips, shoulders and sternum especially bad)? Using hot packs, calpol, and some ibuprofen ( but she has asthma and isn't meant to use it) Thank you

[MedusasBadHairDay]

I found a TENS machine helpful when I tried it, so that might be worth a go?

[picklemewalnuts]

I used tens a lot. It sort of masks the pain by setting up interference.

Is ibuprofen gel equally problematic with asthma? I find that surprisingly helpful, and I can use it without out needing to eat (bonus).

[DunravenBadger]

I use TENS a lot too. Was going to suggest heat packs but see you've tried that. Have you tried tape or joint supports (wrist supports, knee supports etc)? I don't mean the tubigrip ones, they're rubbish. I mean the proper ones with the straps and things - if that makes sense?

[DunravenBadger]

Oh also if you find heat packs helpful, heat rub helps too.

[RitaFires]

If she can tolerate them I find compression base layers intended for sport and skiing helpful, the gentle compression supports the body and it feels great. I have to second supports but I find the seams and straps on some irritate my skin so I can't tolerate them for long, anything with silicone in it makes my skin peel off like cling film but I appreciate that other people may not have that problem.

[RitaFires]

For shoulder pain I have one these www.amazon.co.uk/Elegear-Cervical-Traction-Shoulder-Students/dp/B08B612QZD/ref=mp_s_a_1_10?dchild=1&keywords=cervical%20neck%20traction%20device&sprefix=cervical&qid=1615217452&sr=8-10&tag=mumsnet&ascsubtag=mnforum-21
You just lie on it for a while. I also have an inflatable neck traction collar but it takes ages to inflate the bloody thing.
Personally I feel like my body is held together by fraying elastic so anything that can hold it together more securely or push displaced parts back where they should be provides relief. I bought kinesiology tape but I wasn't sure how best to tape myself together so I never actually used it. I find compression sleeves that you just slide on much easier to use.

[Bells3032]

Unfortunately without painkillers not much you can give her. Like others recommend tens machines and also a back massager for shoulders and back

[Ouchwtfthistime]

I don't know how realistic this would be for your daughter but I went to orthotics and they were great, I know they do a lot of thinking outside the box too. I've had a Lycra top and bottoms made, with reinforcements on my shoulders, elbows and hips. I currently can't get them on though as they're very tight (I call it NHS bodycon) with zips. My wrists are too buggered for that atm. I've also had some moulded wrist supports made to try and guide my wrists into a better position, but that is temporary until I see the surgeon. I've been lucky that the therapy team have a good understanding of EDS, across the different disciplines (far more so than the consultants, don't get me started on those!). I've also got an ankle brace but I struggle with how obvious it is.

Would it be worth a referral to an OT to get the ball rolling? She then referred me to orthotics but I've had involvement from the hand therapist too. I'm not sure what the referral process would be like in your area for therapy services so it may differ from my experiences. The compression from the top and bottoms is very odd at first but certainly helpful, although I appreciate your daughter has other challenges too. I know my orthotist devises all sorts of different aids, taking into account many different factors for people, could be worth a punt?

[ThisIsSimplyBeyond]

How old is your daughter?

I recommend weed 😂

[DunravenBadger]

@ThisIsSimplyBeyond

How old is your daughter?

I recommend weed 😂

Haha 😅 My friend keeps recommending CBD oil. Might also be worth a try if you can't get hold of any weed. No clue if CBD oil shows up in drug tests though 🤷🏻‍♀️

[Sooverthemill]

Thank you all. My DD is almost 22. Her brother ( not living with us)has offered to obtain weed for her but she has asthma and is also hypersensitive to taste and smell and smoke especially aggravates her asthma. And eating is another big issue. She's losing weight and I'm concerned she may need to be tube fed again.

Why the issue with a drug test? Our palliative care nurse tried to obtain CBD spray from a pain clinic but they wouldn't give it without her coming in and she is entirely bedbound ( she has very very severe ME and POTS and is entirely bed bound travelling by stretcher/ ambulance only for emergency reasons ). She is hypersensitive to touch and finds anything on her skin causes abrasions and also a burning sensation she finds very tough.
We have tried a tens machine but was allergic to the sticky pads . We still have it and I periodically bring it to try again.

We have some good physio provided wrist supports ( neoprene) and finger splints which she uses when she really feels she has to. I got her similar knee ones. Had to air them for 2 weeks because if the gross smell which made her throw up! We are trying volteral but I am allergic to deep heat and I assume she would be too and the smell would be an issue.

@Ouchwtfthistime I will ask GP. But I fear that like with any clothing she will find hard to tolerate. She wears knickers and the biggest baggiest tshirt ever and even giving her a new one when the old one is in holes causes a reaction.
@RitaFires I will look and see if that is an option.

She is really really tricky. It's really really hard
Spoken to GP today who has agreed a referral but fears our local team won't use zoom and will make her go in which will mean a 2 night admission

Thank you all so much. The pain makes me weep for her. I'm sitting down here with a large G&T ( honestly that's very very unusual as I also feel I have to be 100% in case we need an ambulance) trying to pluck up the strength to go back up to her. I gave her calpol and ibuprofen and volteral at 6. Praying she might have fallen asleep. What I can't fathom is how she can still be so nice and kind to everyone when I am basically about to murder DH who has just told me he's had a really productive day at work and 'what's new with you?'.

[OhDearShirley]

Don't give ibuprofen and voltarol together. They are the same type of medication and shouldn't be mixed.
If she isn't under a pain clinic can you ask for a referral?

[WaldenintheWoods]

Just wanted to send love & to your poor DD & to you for all your caring. I have those conditions too, plus MCAS (a charming trifecta) & medical care & awareness is so poor. I'm neither young or very severe by the way.

Has she tried amitriptyline or nortriptyline? I found a low dose took the edge off. I also experimented with CBD oil (can recommend CBD Brothers. The Original Alternative) although I stopped due to MCAS. She might not tolerate the smell/taste herself. I can't think of anything else just yet.

I'm sure you're on plenty of online support groups as it's miserably isolating. Tactless of your DH, but maybe one of his coping strategies?

Very severe M.E. is extremely challenging & I do hope that your daughter can get the care she needs, without having to move her.

Enjoy that rare G&T *@Sooverthemill"

[Sooverthemill]

@OhDearShirley GP said it was okay for acute episodes

[Sooverthemill]

@OhDearShirley also our pain clinic only accepts people who can attained in person and also attend a support group. She can do neither. It's incredibly inflexible and I considered making a complaint but I don't have the energy
@WaldenintheWoods thanks, at her worst she is like the people like Jen brea and whitney defoe. Whole months have been spent in total silence in total darkness being tube fed. Actually it adds up to years, she was 14 at sudden unexplained onset. That was 2013. We have been to so many hospitals, lived in nursing homes, tried so many 'maybe this will work' solutions. And nothing helps. She hasn't improved one jog. I also think she has MCAS but I'm not sure ( she has so many allergies and chemical sensitivities) and I'm pretty certain she has cervical cranial instability having read around that. I'm trying not to be dr google but US resources are so much better than here! I'm sorry you are also so unwell, it's a shit illness

[WaldenintheWoods]

Oh god it feels so hopeless doesn't it. ☹️ I also became ill 2013 - viral-triggered. Last year I was assessed for CCI too (& X-rays) by an Atlas Orthogonal Chiropractor, but adjustments haven't improved my condition one bit.

You must be utterly exhausted by now. I'm sorry.

I'm sure there is nothing new I can suggest that you haven't already tried. The only thing I could say, is don't give up. I'm sure you're aware that recovery from very severe M.E. is much likely for the young. Although that doesn't help either of you right now

I have to limit my online time. But for now, take care @Sooverthemill x

[Ouchwtfthistime]

I did wonder about that Sooverthemill. I know my orthotics dept do all sorts so it may be worth a punt, thought it was worth sharing just in case. for you and your DD (unscented for her xx)

[DunravenBadger]

@Sooverthemill

Thank you all. My DD is almost 22. Her brother ( not living with us)has offered to obtain weed for her but she has asthma and is also hypersensitive to taste and smell and smoke especially aggravates her asthma. And eating is another big issue. She's losing weight and I'm concerned she may need to be tube fed again.

Why the issue with a drug test? Our palliative care nurse tried to obtain CBD spray from a pain clinic but they wouldn't give it without her coming in and she is entirely bedbound ( she has very very severe ME and POTS and is entirely bed bound travelling by stretcher/ ambulance only for emergency reasons ). She is hypersensitive to touch and finds anything on her skin causes abrasions and also a burning sensation she finds very tough.
We have tried a tens machine but was allergic to the sticky pads . We still have it and I periodically bring it to try again.

We have some good physio provided wrist supports ( neoprene) and finger splints which she uses when she really feels she has to. I got her similar knee ones. Had to air them for 2 weeks because if the gross smell which made her throw up! We are trying volteral but I am allergic to deep heat and I assume she would be too and the smell would be an issue.

*@Ouchwtfthistime* I will ask GP. But I fear that like with any clothing she will find hard to tolerate. She wears knickers and the biggest baggiest tshirt ever and even giving her a new one when the old one is in holes causes a reaction.
*@RitaFires* I will look and see if that is an option.

She is really really tricky. It's really really hard
Spoken to GP today who has agreed a referral but fears our local team won't use zoom and will make her go in which will mean a 2 night admission

Thank you all so much. The pain makes me weep for her. I'm sitting down here with a large G&T ( honestly that's very very unusual as I also feel I have to be 100% in case we need an ambulance) trying to pluck up the strength to go back up to her. I gave her calpol and ibuprofen and volteral at 6. Praying she might have fallen asleep. What I can't fathom is how she can still be so nice and kind to everyone when I am basically about to murder DH who has just told me he's had a really productive day at work and 'what's new with you?'.

I wasn't sure if your DD was working or if drug tests would be an issue for her. But reading more about your DD's situation, obviously it wouldn't be an issue. Is there any way you could get CBD online or from somewhere like a health supplement store?

Sounds awful with the pain clinic refusing to see her. They really are useless at times. I so hope you find some relief for your DD

I don't know if this would be an option for you but would a tempur mattress help?

[Sooverthemill]

Thank you @DunravenBadger I forget that of course all you lovely kind people don't realise that she does literally nothing. Became ill suddenly overnight at 14 ( woke up at 3 threw up everywhere, went back to bed and never got up again). So I do everything for her 24/7. Miraculously she didn't wake me in the night so I slept a full 6 hours and hid that's helped. @dunraven she has a tempur mattress now. First 6 months on her old mattress then 3 years on a hospital bed and terrible terrible bed sores. Just awful. And she still has huge scars from those ( that EDS skin). Then a wonderful new tissue viability nurse came and suggested she came off the hospital bed and we used a really good mattress on a double bed so she can sleep in the middle and minimise chance of her falling out when she faints ( very common, she has POTS) and it worked! Did have to air the mattress and new bed for 3 weeks first which is quite hard if you don't live in a palace. No bed sores since. We also got manuka honey and the manuka dressings to use in any abrasions which have been a godsend

Can I please say a massive thank you to all of you who have taken the time and trouble to reply. I feel dreadful that I've said 'we've tried that' kind of dismissively to most suggestions which I feel is so rude and not valuing you all and the energy I bet you've used to respond. I've never ever found anyone who gets it. My best friend just says 'surely she's better now?'. No one actually understands that when I say she doesn't get out of bed, that means she literally doesn't get out of bed except in our weird difficult clumsy way we've developed of shuffle rest shuffle rest shuffle transfer to wheelchair rest for 10 minutes have a quick faint rest move to bathroom resting kart way faint see if she has the energy to get onto loo for half an hour. Yesterday evening I squeezed into her loo ( we've given her the bedroom which has an en-suite) and held her on the loo so she wouldn't fall. For half an hour. She had done a wee she thought but couldn't remember. I fantasised about actual aids and adaptations that might help. But thank you, genuinely from the bottom of my heart. She is my world but I'm so troubled by how ill she is and how utterly useless I am except to do the physical stuff and touch her hand.

[picklemewalnuts]

It feels quite shocking to me, Soover, that a girl in her position is just 'accepted' medically. I can't believe there isn't a team of people trying to work out what happened. Or a specialist team who organise medical care that works for people in her position- the bed bound shouldn't be expected to go somewhere to receive care that may help them.

[Sooverthemill]

@picklemewalnuts yes I understand how you might think that! I assumed that docs would be interested in her because surely she would be a puzzle to solve? But no. She has very severe ME, POTS probably EDS, probable endometriosis ( 100% certain myself) plus eczema, asthma, a million allergies and I think MCAS and currently being tested for lupus/ sjogrens after I hassled and hassled. She also has a weird blood clotting thing. She's always been a sickly thing in between periods of fabulous activity. For example if she caught a cold she would be off school for 2 weeks with an asthma flare up. She had croup a dozen times. Lived in A&E as a kid. She had swine flu, always got every single thing that was going round. Always sleep issues ( since age 3) and painful joints and headaches. She has mesenteric addenitis which was confirmed with a scan , she's had chicken pox twice. She has been in hospital endlessly. She had cyclic vomiting syndrome. Oral allergy syndrome. But she was a joy until she became this ill. And is still a joy to me now. Obviously I would lay down my life for her

[ThisIsSimplyBeyond]

I have asthma too soover, I buy mine as THC oil in capsule form.
Or at least I would, if that were legal...

I have opiates, I just hate them as they fuck up my digestion even more so

[Becca19962014]

@Sooverthemill please don't worry about saying about things you've tried. You can't list every single thing you've tried in your OP. I know I've been in the same situation regarding accessing help/benefits. I know, because I had the PMs to prove it, not everyone takes that view but it's the only logical one to take really.

I've no help with any of my medical conditions, no GP, no social care, nothing. It's very easy to slip through the cracks (or chasms) in NHS care in many areas. In mine they want me to concentrate on one problem only but that's impossible for me to do - the EDS means everything is linked and even if people look it up I then end up with sarky appointments about needing to put in effort and "have you thought of physio" or there was my first appointment with an OT who googled, yes googled, EDS and turned up with printouts from dr Google and nhsdirect which were utter rubbish, I mean under treatment it had "intensive physiotherapy works well" next sentence "physiotherapy can be very damaging". The fact is physio can help but only if done by a specialist of which there are too few in the UK. The general physio I had was agony and saw me collapse in the department. I was given specialist splints but my joints are so misaligned that wearing a specialist knee joint was agony in my hips and my feet turned blue - after decades of being misaligned it simply wasn't an option.

I can't have TENS as it triggered seizures in me, I don't have epilepsy but dysautonomia (pots is one common diagnosis in that group) and it caused my autonomic system to go haywire (well more haywire!).

I hope that makes sense, I'm not having one of my better days today.

[Sooverthemill]

Thanks @Becca19962014. That helps. Hope tomorrow is a better day

[Sooverthemill]

Well rheumatology have accepted the referral, now to await the date. Her repeat Lupus blood test is on Monday. It's been a really tough week for her pain wise and that has a knock on for me but we are still breathing ( though strangely whenDD breathes it's giving her shoulder pain, quite bad).