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Chronic pain

EDS and Secondary Fibromyalgia diagnosis today, what can I expect?

10 replies

Matchingcollarandcuffs · 18/05/2022 17:45

Finally diagnosed today after years (and years) going to the GP in pain with various ailments. It took the gastro I was under re me only pooing once a week to join the dots to suggest hEDS.

I will be having a myriad scans/tests as they also suspect some disc disease and possibly fibrous band too.I am also two weeks post ankle surgery to reattach ligaments that were stretched out and damaged.

I currently get some relief from co-codamol and Dr has suggested duloxetine, I have tried all the other meds. Reflux/gastric issues means no NSAIDs and have tried all the nerve meds (pregabalin, gabapentin, verapamil, indomethacin, triptylines) and the only thing that helps at all is regular co-codamol.

Once my ankle is healed and I start my hospital hypermobility pain management/physio and have the separate pain clinic appt I can understand weaning me off meds but for now when I'm in a boot and on crutches for at least another 4 weeks what other options do I have?

Any other sufferers how do you manage pain? My worst is constant neck (which triggers horrific migraines) and lower back which is a kind off burning/screaming pain.

And any other tips? I am actually v relieved to get the diagnosis and kept thanking the Dr as I've spent years being treated as a nuisance by the GP who just moans and is likely just trying to get meds.

OP posts:

picklemewalnuts · 18/05/2022 18:05

I can't talk about the EDS, I've no experience.
Re fibromyalgia- how's your sleep?

I've found I needed to treat myself like a baby.
Reduce stress, eat regularly, sleep regularly.
Pace yourself- which doesn't mean a day off after a busy day, it means never having a busy day in the first place.

Avoid anyone and anything that wears you out, emotionally. I stopped taking phone calls, as I'd get that neck pain you are talking about.

Find a way to get quality sleep. For me, it's amitriptyline at a low dose.

Also, use hot Epsom salt baths, a regular spa/jacuzzi/sauna/steam room, if you can get to one.
Massage helps break down all the knots in my muscles.

Re the Fibro- take it seriously. Do whatever it takes. When you are feeling better, you can build up the excitement, activity etc.
first of all you need to rest.


Matchingcollarandcuffs · 19/05/2022 08:40

Thanks, my sleep is terrible but it's worse due to being off my hrt and my ankle, hope once it's healed and I'm back on patches it will improve.

We joined a posh gym so I can exercise carefully and mainly use their jacuzzi, so as soon as I can get my ankle wet I'll be straight back in.

I have been quite good at managing the fatigue etc and am sure my friends think I'm flaky was I often drop out of things but that's cos I know my limits. And can't afford not to work to have to prioritise it above all else.

Wish we could get massage on the NHS, I have them when I can afford and they realty do help when I'm in spam.

Thank you for replying

OP posts:

picklemewalnuts · 19/05/2022 10:35

When you are able, Tai Chi is an excellent exercise. I do it online. Without putting any stress on the body, you gradually get stronger.

When I started, I couldn't stand for the whole class. I've worked my way up to doing deep stances and am so much stronger and fitter. It's built in mindfulness and meditation, too.

I also saw a private physio who showed me how to manage injuries. Basically when something hurts, stop stretching it and just make tiny repetitive movements stopping before it hurts. Over time, your brain accepts that it no longer hurts and allows you more movement.

I did a very cautious, graded exercise program as well.

I've been really lucky with the interventions I've been able to access, partly through husband's work health insurance.

My local health board do a 'fibro course', where we were taught about managing it and doing the exercise programme.

I hope you feel better soon, now you've got a proper diagnosis. Hopefully you can target treatment a bit better.


Matchingcollarandcuffs · 19/05/2022 10:39

Thanks, so glad that exercise worked for you, that's what I'm hoping for too.

OP posts:

doadeer · 19/05/2022 20:36

I have fibro and chronic back pain and hypermobility.

I've finally made progress lately by firstly understanding more about pain, how it works and why the body and mind generate it using the curable app, then realising my body is in fight mode constantly I've been focusing on relaxing my parasympathetic nervous system through Reiki, meditation, hypnosis.

Prior to this I tried every single medical intervention I could, I've had so many things done, every drug going. I'm still not pain free but I've brought it down from a 6 out of 10 minimum daily to a 2/3....

It's been a huge mindshift change for me


Matchingcollarandcuffs · 19/05/2022 21:18

Thank you, I'm really lucky to be referred to a multi disciplinary team that really unpicks pain, and also offers physio/graded exercise.

I also took my first duloxetine tonight but I have a terrible track record with getting side effects!

OP posts:

picklemewalnuts · 20/05/2022 07:48

As a last ditch resort, when you've done all the other lifestyle interventions...

I'm reading about vagal nerve stimulation. I'm hesitant to try it, as I feel well right now and don't want to unsettle everything. It's an art rather than a science at the moment. You use a tens machine to stimulate the vagus nerve in a very targeted specific way, starting small and building up. It's very new, just starting to be studied.


SpaceJamtart · 20/05/2022 08:20

My neck is the worst of mine, I have hEDS. I struggle with having un unsupported head for a long time but I've dound that a proper rest resets it for me. So at work, if its bad, I take my break and lunch in my car. Which looks a bit antisocial but means I can take all the pressure off my neck before it builds up, I lay the seat all the way bay and lay down. Also I got a high backed sofa so in the evenings I can rest my neck without having to lay down.
Lower back pain I have only been able to help by sitting in a seat with a smaller that 90 degree angle so that my knees are slightly higher than my hips. This helps if you hyperextend your hips and knees and everything when you stand and walk.


Matchingcollarandcuffs · 20/05/2022 10:13

I've had a horrific night with migraine and diarrhoea, Inn on crutches and in a bit and the run to the loo was not fun.

I'm' back' working today following my op but just can't as it means sitting on sofa on laptop which is guaranteed to kick off the missive again. My whole neck is agony to touch, clearly in spasm.

My poor mum lost 7 inches due to her EDS and couldn't hold her head up at all or sleep lying down, she was just curled up like a prawn. I really hope the physio can help with the neck as I stop dear sending up the same.

I'm a bit wary of vagus nerve as I'm a bit fainty, I don't want to risk it but it does make sense

OP posts:

picklemewalnuts · 20/05/2022 13:31

Oh dear!

I'm about to try a shakti Mat (unbranded version). I'll let you know if it helps.

You aren't near Kingsmill Hospital are you? They have a multidisciplinary team approach to Fibro.

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