Newly Diagnosed with BFS, Burning Knees

[RaymondoMandingo]

HI, I am new to the site, have not posted a message before.I was recently diagnosed with BFS. I had previously had twitching and burning knee joints for about 8 months before I got a definitive diagnoses from a Neurologist. He does not seem to think that my Burning Knees are related to my BFS. I also get (leg and full body jerks) especially in bed at night. They are worse than the bfs. The burning knees are also very painful and I cannot seem to get any relief from them. If I do too much physical work and get tired my bfs and burning knees really get bad and I also get burning elbows and wrists. I used to be very fit before getting this doing lots of walking, gym, etc. Now I cant do any of the strenuous exercise as my symptoms go Beserk. I can still walk though thank goodness which doenst seem to ascerbate my problems.Does any one else out there also have Burning Joints and Jerks and well with their BFS My first symptom was the burning knees about 10 months ago. Then about 2-3 weeks after that my fasciculations started.Any feedback would be appreciated.Cheers Raymondo

 

[Krackersones]

Where do you get twitching? Is it localized to your knees. I have bodywide twitching that may be autoimmune related as I've had several very high ANA titres. If you haven't had autoimmune tests you probably should as the burning knees may be caused by autoimmune issues that also impact the nerves.

 

[edirish73]

Raymondo,Burning and some degree of pain ( either muscles or joints) is pretty commom with bfs, your nervous system isnt working properly, for whatever reason, in the end the relevant aspect is that its Bening and it does get better with time, patience and good medical advise. See your BFS as a golden chance to begin living a healthier and meaningful life. About the myoclonic jerks, yes ,I used to have them on my first 2 months of BFS, try Klonopin(Rivotril) and they should get better.Welcome to the board,Eduardo

 

[simonw00]

Dear RaymonoHave you had a look at the 'featureed articles' on this website? If you do, you'll see a May Clinic review of 120-odd patients with BFS. From this you will see that some patients do have various sensory symptoms, of which burning knees could be classified. You will also see that exercise will commonly flare up BFS symptoms, and that night time is when most people get bad symptoms... this seems to fit pretty closely with your description.A couple of other things spring to mind (1) you might want to check with your doctor that other causes for a burning sensation in your knees has been looked into (e.g. low vitamin B12 level) and (2) there is no link as far as I know between restleg leg synfrome (RLS) and BFS... I wonder whether your nocturnal 'jerks' are more to do with something like RLS (I happen to have both BFS ans RLS, by coincidence, but don't believe that one has anything to do with the other)All the bestSimon

 

[TimThomas24]

I had the jerks early on with my situation. I was really freaked out by those. I've also had burning but more in the feet then the knees.Its all part of the diverse menu of oddities that is BFS I guess.

 

[angusglover]

Hi RaymondoBurning is a major symptom for me. I get it from hips to toes. I also get pain.The jerks are annoying. Sometimes it is full body and I jerk the whole bed and wake the missus up ...

 

[AaronKing1]

Burning, false weakness, jolts, zaps, body-wide twitches etc......I have had all of them. Fortunately, it seems to be a part of BFS. I my case, most of these have subsided over the past years.

 

[DirtySouthwestGuy]

Raymondo,I get the burning sensation in my knees a lot. It's a horrible feeling, and sometimes lasts for ages. I also get burning in both of my feet, although more in the left foot than the right. Zoe