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Ehlers-Danlos Support UK
1,827 members β€’ 568 posts

Sick and tired of being sick and tired

Hi. I have been diagnosed with Ehlers Danlos Syndrome type 3 since 2008. I have had to stop work. I do work out at gym as much as possible but deal with chronic pain everyday. I live in a very country isolated area so local hospital has no knowledge of this genetic disorder. That leaves me struggling for treatment with dignity and humanity. I just want to fit in. I am a retired RN and I have never treated anyone the way I have been treated. I hope that the medical field finds its compassion again.

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Am very much feeling for you Country4eva. Reading your post leaves me full of dismay. This is really hard on you...really tough to bear this. I just replied to Rfplym's post in a similar vein...so I'll continue in a slightly different direction now...

I too live in a fairly remote rural community. No one I know anywhere has even heard of EDS, let alone hypermobility. My lifetime of constantly dodgy health & emergencies led to early retirement...things have been v depressing...I've been treated in dreadful ways by staff of all kinds & at all levels in the health system over the years...I know that the system is under terrible pressures...BUT since 2011 when my infant onset lupus was recognised: the system at all levels has treated me MUCH better...it's as if I needed the lupus llabel to get the system to respect my EDS

I'm lucky to have practiced meditation & yoga + pilates for many years + to have worked with a wonderful therapist who is also my Alexander teacher + more recently I have been lucky to find fantastic NHS physios (I always insist on seeing the most experienced senior physios) . All that helps a lot, but I really don't know how l'd have coped with out the solidarity & info sharing of org's like EDS UK & Lupus UK

For sure, I'm stuck having to travel into other regions for aspects of my NHS treatment. I'm lucky to have a supportive GP & husband...but coordinating & driving my care forward is primarily my responsibility....the system can only do so much for complex patients. My GP & multisystem clinic consultants all admit this

For what it's worth, my version of sick & tiredness is partly related to EDS Dysautonomia, but SLE + associated secondaries are also part of the mix. Lifestyle management is my main coping mechanism, but my daily combined therapy treatment plan lupus meds have gone a long way to help me feel more stamina & resilience. Am sure you've been considering whether some sort of immune dysfunction may be part of your mix? You're right: this sickness & tiredness is vvvv tough to manage & vvvvv demoralising.

So, I'm glad you're here and I wish you all the very best

πŸ€πŸ€πŸ€πŸ€ coco


Thank u so much. Im battling shingles this week.

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Oh no: am sure you're taking good care of yourself...I hope the health system is doing right by you, and that this settles down soon! πŸ€πŸ€πŸ€πŸ€


Taking my chronic pain meds for the shingle pain. Scared to ask for anything else as i have been treated badly over pain control in the past. Am taking steroids and acyclovir. Pills are aweful. Drinking plenty of water. Thank u

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