I’m just having a moan as having some bad days at the mo. I was dx last year with mitmitochondrial disease but now they not sure that it is!! my consultant now thinks I may have MS but has given me a dx of fibromyalgia for now he says…
I am not not feeling to good at the moment as pain in my legs from cramping is so sore I could cry…
I am taking 2.4g gaberpentin / day and tramadol when I need it. but this doesn’t seem to be enough. my right arm is numb and tingly and I keep dropping things . anyone suggest what else I can take ? I have an app coming up for the pain clinic and it would be nice to be able to no a bit about other meds I could potentially have that might help with the pain.
sorry to rant on x
Milly x
Well, how on earth would they manage to get a mitochondrial disease confused with MS?! Sounds like they have a lot of explaining to do 
As far as pain goes, you are not at the maximum dose of gabapentin yet (it’s 3600mg), but it’s also possible to take an anti-depressant on top of this if necessary (they can be excellent neuropathic painkillers and the two drugs together have a bigger effect than the two separately, sort of like 2+2=5).
However, if your pain is due to cramp / spasms, then you would probably be better to ask about muscle relaxants, e.g. baclofen.
Obviously everything would have to be considered in light of a possible mitochondrial disease though, and I have no idea whether or not what I’ve suggested is remotely sensible for that.
Do make sure that the people at the pain clinic understand exactly what’s causing your pain, and that they know about the diagnosis confusion (which really sucks!).
I hope the neuro sorts things out very soon.
Karen x
thank you Karen, I’m just so confused at the mo I just want to cry… just a question if you no the answer, doas fibromyalgia cause cramps and spasms in the muscles?
Millie x
Sorry, Millie, I have no idea - I don’t know much about it
There’s bound to be a fibromyalgia association, or something like that, on-line. Maybe have a google?
Kx
Hi Millie
So sorry to hear about your diagnosis confusion. Mitcohondrial disease certainly wouldn’t be top on the list for differentials with MS but people do say MS can be a great deceiver.
Karen’s given you some fab advice on meds and is much more knowledgeable than me in that area so I won’t ad any further.
In terms of whether Fibro can cause muscle cramps and spasms - from what I know and from what I’ve seen with my colleague who has fibro you certainly can. Though pain and fatigue to my knowledge are the main and worst symptoms.
Hope you get to the bottom of what’s wrong soon.
Reemz
X
I can’t offer you any advice but can offer my sympathy for the position your in as I’ve been through exactly the same.
Most recent neurologist diagnosed fibromyalgia and refused to investigate into whether I actually have MS, I have exactly the same symptoms as my mother who has MS and it runs in her side of the family. My GP also believes I have MS but wont refer me to another neurologist for further investigation as it would be going against the most recent neurologist.
Besides it seems that the meds to manage the symptoms are exactly the same…
I can’t move to another practice as they wont accept me due to my ongoing treatment.
It seems however that I’m very lucky in that I’m receiving medication for my symptoms which is helping and that my employers are reasonably understanding.