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I've had enough, losing the fight to fight!

Jan 22, 2011 - 2 comments

Depression has taken hold over the last few months, stupid remarks from neurologist didn't help..'myoclonus is just annoying live with it' and then he discharged me.
I am having to accept that I have spinal myoclonus, reflex myoclonus and joint and muscle issues.
Thursday I saw my doctor regarding being referred back to neuro and I have decided not to bother, other than stupid remarks all they do is offer me epilepsy meds,I don't have epilepsy, I am taking clonazepam which doesn't help much with jerks and just makes me feel like the walking dead.
Yesterday I was at rheumatologist, all the tests and scans have come back normal, but she has offered to send me for rehab to help with joint and muscle issues, I'm going to try it, but as I still have myoclonus and will have for the rest of my life I can't see what they can do. Rehab in my eyes is for people who have had an accident and it gets them back to normal, not for people who have an ongoing condition but you never know.
Feeling mighty sorry for myself and that makes me feel guilty because I know there are people out there 100% worse off than me.


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483733 tn?1326798446
by TrudieC, Jan 22, 2011
The epilepsy drugs do help - fibro is a disease of the brain.  You can feel sedated for the first week or so but then it gets better.  Do take the depression meds.  My fibro and other issues were much easier to deal with once the depression was lifted.  I've been on Remeron and am about to start tapering off of it.  I've found a lot of relief from therapeutic massage - namely myofascial release therapy.  It can get easier.  

1168938 tn?1327154232
by suzsibs, Jan 22, 2011
Hi Trudie
Thanks for your note, I have been on anti depressants for 10 years and clonazepam for a year or so. My rheumatologist says she won't LABEL me with fibro, which means she won't explore the possibility and I have now been discharged and she has passed me onto rehab for my issues.
I've had spinal and reflex myoclonus now for 4 years and I have deteriorated physically, I used to go to the gym 3 times a week and walk my dogs. Now I get cramps in my hips just rinsing a coffee cup out in the kitchen!!! I walk with a stick have leg tremors and vibrations throughout my legs 24/7.
Lots of other issues, my depression has been made worse as I can no longer do any of the things I used to, I tend to be sat at home watching the dust gather around me, I'm frustrated as I cannot get a diagnosis other than myoclonus which is a symptom and not a disease. It can be caused by tumours, bone spurs, MS and lots of other diseases, I've had all the tests going and everything comes back normal.
I'd just like to get up one day, polish, hoover up, clean windows even do the ironing LOL. Instead I struggle from the minute I get out of bed until I go back at the end of the day.
I'm sorry you have fibro but pleased the meds are helping you, as for a massage LUXURY, I might treat myself with my Xmas money :o)
Take care
Suz

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