worry for son

[withie]

Hi my son has fm/cfs and has had for 4 years he seems to be getting worse or at least the attacks seem to.  Some days he seems like my old son he is 31 by the way but the next day he can be in as much pain as ever.  I appreciate all of you who suffer with this will have as many and varied painful and irritating symptoms as he, but he has started to twitch in bed at night.   His legs have started to jerk and he cannot control it.  It  has frightened him as this is new.  He went to his doctors begrudgingly  as he is not very understanding of  fm/cfs hoping he may have reassured him it could be related to his fm/cfs now he has sent him to see a neurologist which is good, but he is a little concerned.  Has anyone else ever had this syptom with thier  fm/cfs

Also I just wondered if anyone else had heard of m.e. attacking the nerves in the neck as this is where my son says his severe pain in his head and his body seems to stem from

Thank you so much I thank all in anticipation of a reply
Withie

[geminigirl1963]

You may also suggest to your son that he check into the possibility of seeing a rheumatologist - many of them treat fibro patients and, in my experience, are more knowledgeable and "patient friendly" about it.

The restless leg symptoms that you describe are quite common with fibro/cfs.  There are some very good medications that can help control it.  It could be possible, too, that a prescription sleep aid would not only help the restless legs, but also help your son to get a better night's sleep - something that is very important with fibro.  Many, many fibro sufferers have a horrible time sleeping (I know I sure do!) and need a sleep aid to help them.  Of course, NEVER add or change any medication - prescription or over the counter - without first discussing it with your doctor.

I hope your son can find some relief soon.  He's very lucky to have a mom who is so concerned and involved in his care :)

[vintagechicken]

What you described of his legs jerking is a symptom that I've seen others with Fibro mention.  He may have Restless Leg Syndrome and for that there are some wonderful prescriptions on the market.  

With FM/CFS the pain seems to target anywhere and everywhere.  There really isn't any reasoning as to why he may have pain in one location versus another... so it could just be that the pain is settling in his neck.  I understand that this must be horrible for him and for you to see him suffer, but if he can find a Neurologist or a General Practioner that supports modern ideas about FM/CFS he should be able to get some very good prescriptions to control his pain and other symptoms.