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

Good news about the referral! Hope they can help.

Follow up blood test due today to check for lupus

Hi soover hope you get a breakthrough soon for your DD, it’s sounds so hard for both of you. I saw about the pain team needing to attend in person... is there a pain clinic which has a residential near you?
Just looked them up if that’s useful and seems there are 4

1. Bath Centre for Pain Services in Bath, Somerset – NHS hospital who also accept private referrals;
2. Guy’s and St Thomas’ Hospital in London – NHS hospital;
3. The Walton Centre in Liverpool – NHS Hospital;
4. The Real Health Institute in Coventry – a private only facility.

Perhaps one of these may be able to help you both find a way forward. Hope so 🤞💐

@TangerineGreen that's so kind but sadly we are hours away from any of those. Potentially the London hospital might be feasible as we are only 2 and a half hours away but the journey to our cancer hub hospital was a similar length and she really suffered . Moving makes her vomit and faint. Also causes pain and worsening of all her ME symptoms and she gets abrasions from the straps they have to use. Our nearest outpatient pain clinic is just over an hour away and it wouldn't be possible to do a return journey in a day. But I will investigate and see what we can come up with. Once when nhs let us down we had to sue a private ambulance service ( paid for my nhs) and it was so much better!

I have classical EDS and was about 90% as ill as your daughter for about 5 years. I’m now a lot better (about 60-70% on the functional ability scale ). What helped me was morphine for my pain and fludrocortisone for the POTS. Once my pain was under control and I was no longer fainting every 30 seconds I felt so much better. Then I had a longish inpatient stay at the specialist EDS clinic at the RNOH in London. They’ve a tertiary clinic that only takes referrals from rheumatologists but they know EDS so well, it’s amazing. I still have a lot of issues but improvement really is possible; I’m proof of that.

Two (out of four) of mine have EDS. They are both in their twenties now as well.
Is she on medication? DD2 is on Gabapentin and Amitriptyline (plus standard painkillers and bowel meds) and they definitely help. The other (who has also had to be tube fed) is on heart meds too..her POTS is the more severe of the two.
Both have been incapacitated at different times, braced head to foot too, but...they have good teams around them which they are both lucky to have. Both are also on antidepressants (and DD1 an antipsychotic which weirdly has helped in a variety of ways including her ability to eat... she had a bmi of 13 before hand..now 18) Has your daughter had good support with meds? I'm sorry she is in such a poorly way :(

@JeannieTheZebra @StillMedusa thank you both. She used to take amitryptiline , pregabelin and gabapentine. None worked on pain or sleep. This was prescribed by her then paediatrician who was a total star. Oral stuff is tricky and I've only just this year trained her ( basically) to accept paracetamol caplets rather than calpol ( because Covid or something made it hard to find). All tablets taste. Therefore all tablets make you vomit. So it's a hard process to swallow anything. We tried titrations oral morphine in hospital one admission for fluids but because it made her vomit they couldn't titrate it so they couldn't prescribe it even when she has an IV.

Her BMI has drooped below 13 several times and that's when she gets tube fed. But tube feeding makes her recto and actually vomit because of the taste and smell. We used to bonus feed it once an hour over 9 sessions because the 24/7 drip just meant she could never rest and ended up with bed sores having to be propped up to be sick. Our kind nurse ( she's an adult now so all support stopped from her 18th birthday) has offered to IV her at home but the CCG won't allow it. Two summers ago we were offered a bed in a tiny community hospital so she could have IV fluids but DD refused as she simply couldn't bear the thought of the journey.

She has been under Kings via her paed, addenbrookes palliative care ( paed) and our paed had advice from every paed pain consume could find plus a couple of adult ones. Paed pain teams wouldn't take her as she wasn't end of life. Adult pain teams wouldn't take her because she was a child. And since age 18 no one has been interested. This week I asked GP for naproxen. Her refused, I thought one big gap met might be better than 2 ibuprofen? I am seriously at the end of my tether. Yesterday was a hellish day for her and therefore for me. I need much more sleep than I'm getting. DH wants her to go j to an independent living facility but I cannot allow that until she wants it and she wants to be looked after by me as I generally manage to do things that don't cause extra pain or discomfort. Except at 3 in the morning when I'm so tired I bang her wheelchair into the bathroom door. She's just so unwell. I fear for her. Surely a body can it cope with this much pain?

Bolus feed.
Sorry am tired so many typos

Could you make her some brownies with the cannabis? I doubt smoking would help her but she might be able to tolerate edibles. A quick google would show you all the benefits it's definitely worth looking into especially when conventional medicine isn't helping.

@Mucky1 no! Eating is really hard and brownies pretty much always make her throw up. We try different food all the time. Anything in her mouth is hard. Chewing, swallowing, taste, smell. All are just incredibly difficult. We stick to foods we know don't make her vomit and occasionally if she's feeling especially ' good' we might try a new thing. Food is one if the things that reduces me to tears. If tesco/waitrose/Sainsbury's run out of, say, schloer drink then I don't know what she will drink.

I presume she has a diagnosis of Gastroparesis? My brother (also EDS) has similar issues with vomiting and has a gastroparesis diagnosis. Does she have a NG? Has anyone suggested a NJ? They can sometimes be better tolerated. Is she on all the anti-sickness she can cope with?
The pain med situation really sucks, I’m sorry. The thing with naproxen in particular is that it’s really hard on the stomach. It even makes me vomit and I’ve never been a vomiter, really. Oral morphine can be pretty successfully hidden in strong tasting liquids ( I always hide mine in coke) so that might be an option if she drinks Schloer.
Btw, the shoulder pain when breathing will probably be her ribs. My ribs are unstable and I get a similar sort of thing sometimes. Depending on how much pressure she can take (I know that she struggles with things touching her) there’s orthotics for that.
Hugs

@JeannieTheZebra no she doesn't have that diagnosis. She used to have a neurogastroenterologist who supervised her NG tube insertion and feeding and she suggested an NJ tube may be better later on. But we lost her once DD turned 18. We asked for TPN feeding but they refused that. Even the smell of food can make her throw up. DH and I have a limited range of foods we can eat ourselves because even the smell on our breath ( after teeth cleaning) or skin ( after showering) makes her vomit. I long to eat fish! So DD no longer has any tube feeding and as an adult we can't force her. Last night I talked to her about getting a catheter inserted or having knee she could use herself somehow but she's not keen. I drip drip ideas. She wants to be a normal person again. My heart broke yesterday when she finally slept and woke ( 2 hours sleep for us bath) she had dreamed she went horse riding again and was in tears. I don't think I could get a horse up the stairs!

Oh goodness, it sounds like she really really needs to be seen by an EDS specialist. EDS needs to be treated as a whole, especially if multiple organ systems are badly affected. If you can get her nutrition sorted then that, and medication, will help her POTS so you can start working on her fatigue and joints-but you know that. It’s getting multiple teams to work together that’s the tricky part in the NHS.
I know what she means about wanting to be a “normal” person again. So many of the things I want to do (including, funnily enough, riding...) are still out of my reach and probably always will be. I can now see my aids as “helpers” that allow me to do more but that took time and many, many tears (I got really ill at 20 and I’m now 31). Maybe counselling or a health psychologist could help her accept more things? Accessing helpful people might again be a bit of a fight though. I do think that getting a specialist involved is key though. Sadly, most doctors know next to nothing about EDS, let alone severe EDS.

[quote Sooverthemill]@Mucky1 no! Eating is really hard and brownies pretty much always make her throw up. We try different food all the time. Anything in her mouth is hard. Chewing, swallowing, taste, smell. All are just incredibly difficult. We stick to foods we know don't make her vomit and occasionally if she's feeling especially ' good' we might try a new thing. Food is one if the things that reduces me to tears. If tesco/waitrose/Sainsbury's run out of, say, schloer drink then I don't know what she will drink.[/quote]
This sounds so hard for you all! If she can tolerate yogurt a small amount could be grated and stirred through (think nutmeg) it's so unfair you've just been left to deal with this alone! Your poor daughter.

Spoken to sympathetic GP this morning who is going to prescribe cocodamol for DD to help her through the acute pain. He is just a sweetheart though utterly clueless when it comes to all her illnesses. The good thing is he's happy to take suggestions and read bits of google! Still waiting for consultation appointment

So I've heard from hospital. Minimum of 13 week wait for an appointment. We requested a referral in September but it wasn't actioned. I'm seriously fed up

13 weeks is just over three months. In a pandemic, that's actually really good. I know it's disappointing it wasn't done but at least it has been now, that's good. Hold on to that!

Do you know why they won’t give her TPN? Surely being nourished is a basic!

@HollysBush because her gut works. Even though she retches and vomits at smells and tastes ( including 24/7 when being tube fed) TPN can only be used by NHS when the gut doesn't work

Oh I see. What a shame. Sending you strength.