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.
Please or to access all these features
Please
or
to access all these features
Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.
Chronic pain
EDS and Secondary Fibromyalgia diagnosis today, what can I expect?
10 replies
Matchingcollarandcuffs · 18/05/2022 17:45
OP posts:
Please create an account
To comment on this thread you need to create a Mumsnet account.