Hi Guys. Nel is right. EM is not a one size fits all syndrome - manifesting on a scale of severity and chronicity.
It can be progressive yet can stall.
Can be localised or widespread
Atypical - no one person seems to manifest exactly the same way. Although many aspects similar ie: ankle - foot flaring
Internal - external or both
Whilst no known cure - there are many medications you can try together with self help minimisation tactics. These can help ease certain symptoms.And there are several reported cases of remission. In fact I know someone myself who has been in remission now for 5 months
Some symptoms can be managed to varying degrees- others symptoms simply cant. , Syndrome = a complex group!
Acute Vs gradual onset
Primary Vs Secondary
Individualised Vs generalised approach. In other words certain meds are shared and given as first line treatment to all Em'ers such as Gabapentin/Pregabalin, aspirin, - others require hospitalisation to determine whether you show a positive response ie:Sodium channel blockers,Lidocaine, Iloprost . Alternatively you have the long 2/3 monthly turn around trial/error drugs ie:serotonin boosters, thyroxine,immune surpressants, tramadol .
A polypharmacy approach needed rather than monopharmacy - no single med is effective alone.
Trial/error rather than science - ie: no simple solution
The list goes on ......
For those of you that dont know me I am housebound ,bedbound and reliant on a carer. However, my situation is extreme, my onset was acute - leaving me disabled within 2 months. I have since been diagnosed with severe chronic secondary widespread internal/external EM .... so yes I I have it pretty much everywhere .For all,of us its frightening, its intolerable , and its a bloody wicked thing to have. But its made worse by the fact that most of us struggle for years trying to get diagnosed. There is such a void of EM awareness out there.So few Dr's recognise EM, let alone know what treatments they could be trying you on . Maybe trying to manage symptoms is as good as it is going to get for most of us(at least for the next 5 years). But just knowing what we have is a tremedous relief. And that brings me back to Nells point of worst case scenarios .EM is an enigma ,therefore prognosis is like saying 'how long is a piece of string'. Gangerene, ulcers.... its all about self care.... looking after yourself. You can avoid nerve damage by refraining from icing . If like me you experience terrible swelling - lymphatic drainage (MLD) can help .If you are bedridden - feet flexions can help pump that circulation to lower risk of DVT. You can often minimise symptoms - delay flareseven by avoiding triggers ie; heat, fatigue, stress, exertion, stimulants etc... Its all about educating yourself about the syndrome like you would with any other disease. EM can undoubtedly cause other complications such as polycythemia, thrombotics but then you can cross the road tomorrow and get hit by a car. Refractory pain is notoriously misunderstood. Anything 'invisible' malaise usually is. Truthfully, I dont know so much if things get better ,or you learn to cope better by accepting your condition. What I do know is that this is the place to be - talking , sharing , supporting each other. This is the only way to demystify the mystery. Many of us via trial/error do eventually find a package of treatments that may bring some degree of comfort. Even extreme cases like myself can improve. 2 years later and after 4 months on SCB therapy im now able to get around for brief periods on crutches. I can even type with 2 fingers lol! Wait until i can use both hands!!!!!! . One reason that a list of Dr's is being compiled is so these 'worst case scenarios' will cease to exist.We must raise awareness ! I agree with Nell - fiercely optimistic.
Wishing all Em'ers the most 'comfortable' night possible
God bless
mads
PS: If anyone wants some research listing treatments or info on anything mentioned just ask me.
Also- if you havent given me your diagnosing Dr's name/address please do so.Thanks.
i put foot lotion on the heels (I use Goldbond) and every time I take a shower I put soothing bath product on the shower floor and position myself to have one foot covering the drain so the water accumulates and gives my feet a soothing soak (obviously I don’t take very hot showers!!)