EDS -how do you manage pain?

[LefttoherownDevizes]

I am 46 and current in process of EDS diagnosis after a lifetime of bothering the Drs with one or other complaints. Main issues are terrible headaches where neck cannot literally support head (late DM had same and lost 7 inches height due to hunch) and just terrible pain.

I'm on butec patches but can't take NSAIDs due to reflux/gastritis. Do have co codamol for breakthrough pain but makes me completely nauseous and faint/dizzy with the patches. I was in a car for 6 hours yesterday so back/pelvis is screaming.

How do you manage pain?

Thoroughly depressed that this is my lot, and don't understand how it's deteriorated so much so quickly

Have you tried a tens machine? I use them for cracking headache. Help by blocking nerve pain signals so drugs or other side effects.

My tens machine is a sanity saver when my eds is bad.

Ooh I've got a machine for my back so I'll see if I can find out places elsewhere it can be applied. Thank you

@LefttoherownDevizes I was finally diagnosed with EDS last year six days before my 50th birthday after a lifetime of bothering docs with various issues (all mostly now linked to EDS and other comorbs)

Regarding pain, I don't have any answers as I'm struggling myself (stomach issues, asthma and many allergies have ruled out so much) Have you asked to be referred to a pain clinic? I know a few people who have had various levels of success with this. I'm just waiting for my own referral to come through.

It's a truly shit condition. You have my sympathies. I also basically 'fell off a cliff' with it as I say. It wasn't really a gradual decline. I try to battle the pain, but I'm fooling nobody. My poor Mum asks all the time how I got so bad so quickly. The wheels just came off. Hope you had some success with Tens. I seem to be immune to them for some reason.

I have v severe EDS along with some other conditions; what works for me is trying to manage everything as aggressively as possible so the pain doesn't escalate uncontrollably. It's really about addressing every symptom (in practice nearly all organs) to stop it cycling up and getting worse; any one aspect worsening seems to make others worse too.

I try to stay off opiates as the side effects are so unpleasant but obviously do end up using them sometimes. Generally a combination of naproxen, paracetamol, muscle relaxant, buscopan for gastro and sometimes pelvic (? odd but it does help), plus topical heat, and lots of gentle massage from my partner, is the best I've found. I am still in a lot of pain but I'm very good at compartmentalising and ignoring it as it's been the norm for so long. I'm on a very heavy med regimen for migraine and MCAS too so that helps a bit.

@LefttoherownDevizes are you getting treatment for your headaches?

@LefttoherownDevizes im another with EDS recommending a tens machine.
I'd be careful with massages as they can loosen the muscle too much and leave you more prone to dislocations please see a professional who knows about EDS if you're going to get a massage.

I'm 30 so still quite "mild" (although I've been battling all my life knowing something was wrong, my mum taking me to every doctor she could and I was only diagnosed at 27, and my mild means frequent dislocations and subluxation and I've even fractured my shoulder because it dislocated then went back in as I moved and the way it's hit its fractured it. I also have gastro issues, I'm sick daily and I suffer with severe constipation, I can't walk unaided. But I still class myself as mild because I'm not in my wheelchair full time yet. I'm dreading getting older tbh. You have my deepest sympathies. It's truly shit.

@HerRoyalHappiness Mild or severe isn't purely determined by age, there are quite a lot of factors that affect it. No guarantee that everyone feels terrible as they age, if they're at the milder end.

@Innocenta oh I know. There are people younger than me tube fed. I merely meant as mine is already getting progressively worse it stands to reason that I will be more severe when I'm older.

@HerRoyalHappiness I hope they will manage to halt that process or slow it down as much as possible for you. Do you feel supported by the NHS?

I take celexocib daily with lanzoprazole to protect my stomach. It stops indigestion etc too.

@Innocenta I find it depends on the individual you're seeing to determine how supported you feel. Personally the rheumy is great but the pain clinic were shit.

@catfunk celecoxib is an NSAID (I take it too) so may not be suitable for OP. Although it's worth checking if something like lansoprazole or omeprazole would ease the gastro symptoms and allow you to take NSAIDS @LefttoherownDevizes

[quote HerRoyalHappiness]@Innocenta I find it depends on the individual you're seeing to determine how supported you feel. Personally the rheumy is great but the pain clinic were shit.

@catfunk celecoxib is an NSAID (I take it too) so may not be suitable for OP. Although it's worth checking if something like lansoprazole or omeprazole would ease the gastro symptoms and allow you to take NSAIDS @LefttoherownDevizes[/quote]
celecoxib is the only NSAID I can tolerate, actually the only regular pain medication I can tolerate. I need to take omeprazole but I have that for reflux anyway. And movicol for the constipation effect it has on me. I could tolerate naprosyn for many years, which I think worked better, but I can't take it anymore. Do they use any of the chronic/nerve pain treatments for EDS pain? Things like amitriptyline, Gabapentin, duloxetine, pregabalin, milnacipran and low dose naltrexone. These are very different classes of medication to opiates or NSAID.

@LunaAndHerMoonDragons I take Nortriptyline and naproxen, among a lot of others.

@HerRoyalHappiness I'm glad you have a good rheumatologist! In my area, rheumatology is so poor that I actually don't have one in my team at all. EDS care within the NHS is shocking at times.

@catfunk celecoxib is an NSAID (I take it too) so may not be suitable for OP. Although it's worth checking if something like lansoprazole or omeprazole would ease the gastro symptoms and allow you to take NSAIDS

Yes @HerRoyalHappiness thank you I know it's an NDAID I've been using it for 10 years - hence me saying that lanzopraszole stops the gastric side effects for me. Op may not have explored that idea yet.

This has been a game changer for my severe migraines. Worth every penny. Migraine TENS machine