Hi everyone, it's been quite some time since I have visited the forums. I was dx with Fibro after a one minute pressure point test and clarification of painful muscles. This was 2010, can't beleive its now 2012. In 2010 I had a sleep study and I now sleep with a CPAP machine which does help even though my sleep apnea is mild-moderate.
In October 2010 I started on the Cpap machine and in April 2011 my body was coming good, minimal muscle pains, twitching. I was not ready to return to the gym but I could space out all my jobs within the home and manage to get through my week with far less problems than before.
I still had marked weakness and stamina and if I did too much I would have painful muscles but nothing I couldnt cope with, I didnt want for medication to cope with the pain, like before.
The only thing my doctor ever was willing to try for the pain was lyrica, it was ok, with one cap but really needed the 2 capules but it left a huge hangover effect the next day and being on my own with 3 children this was not suitable.
In August 2010 that all started to go down hill, back came the muscle pains, the twitching, elevated ck-mm, increased weakness, stamina and exhaustion. Mental blanks (the fog) (sitting doing actions of putting on nail polish cus I cant think of the words 'nail polish")
Thoughout this time I have had problems swallowing foods also, thoguh barium swallow seems to indicate muscle spasming (seeing gp this week - I have read there are meds that can minimise the spasm to allow food consumption)
Through all of this I have seen a specialist who is happy to label with with fybro, at the drop of a hat.....
Recently I saw a Neuro - ran more extensive bloods (mag, other acids and antibodies ruling out a dystrophy) I had an EMG = that showed consistant levels of muscle contractions and relaxation which elminated myositis and dytrophies.
I could well be wrong but I am just not convinced my problem is Fybro. I am yet to hear of others refer to their ck-mm levels as being rasied.
I have told my gp that I can tell him when they are up an normal, due to the pain and fasiculation (twitching)
And it does tie in with the results.
I am over weight and in 2009 I had a gastric band put in. I have found it somewhat useful getting from 116kg down to 93kg prior to becoming ill in 2010. In that time I put on weight and still have 7/8 to go to get back to the 93kg.
Granted my esophegus spasms when I eat and I have the band in I really should be finding loosing weight somewhat easier, though I am not.
I have read today that contrary to blood test results hypothroidism can be a problem, so this leads me to think I would need an open minded doctor to atleast try throid medication to at least eliminate this as a problem.
The other thing is I have not had a muscle biopsy or MRI, if these two things were done we could also concretely rule out MS or anything else.
I am finding that the doctors do not have an explanation for raised CK-MM and why my muscle are being damaged.
I am asthmatic and type 2 diabetic, using Diabex successfully, my Hba1c is in the non diabetic range, so its under very good control. My asthma meds do not contribute to my problems.
We have tried Prednilsone without success
Lyrica was only helpful at a dose to high to manage the following day.
Paracetemol and anti imfamatory drugs useless.
Thoughts and advice more than welcome.