KareBear Posted November 17, 2013 Report Share Posted November 17, 2013 I know we all get this at times especially after activity but today I have had severe muscle weakness all day. It's the weakness you get when you overuse a muscle but I haven't done anything. When I try to walk my calf muscles even burn, any muscle I use burns when I move it today and the weakness is constant. I dont typically walk around much except to another room in the house and back but even this is difficult (more difficult than normal) today. Does anyone know what causes this or what can be done to relieve this symptom? Quote Link to comment Share on other sites More sharing options...
E Soskis Posted November 18, 2013 Report Share Posted November 18, 2013 I don't have so much of the muscle burning but, I do have profound weakness of the muscles at times. Sometimes, it is even hard just to lift my arm up. I have dropped when I stepped out of my car due to leg weakness - It is almost like my large muscles are not only weak but, feel very heavy and hard to move. I have no idea what causes this - like all the other weird symptoms we have, I am putting it off on the dysautonomia.......I don't know how to make it better - thank goodness it only lasts for a short time. Quote Link to comment Share on other sites More sharing options...
Katybug Posted November 18, 2013 Report Share Posted November 18, 2013 I experience this daily but I know that mine is specifically due to the severe inflammation issues I have (although we don't have a definite root cause for the inflammation. Most days I just deal with it so as not to overuse any meds but if it gets so bad I can't fall asleep from the pain I take tylenol pm to reduce the inflammation and help me sleep. It doesn't completely alleviate the issue but it at least allows me to sleep. Quote Link to comment Share on other sites More sharing options...
KareBear Posted November 18, 2013 Author Report Share Posted November 18, 2013 Katy, i'm sorry you have this daily! Is yours from inflammation in the muscles?E. soskis, I know that heaviness feeling too, it's like your limbs suddenly weigh 100 lbs each. Maybe I will wake tomorrow with it gone and some other weird symptom to replace it lol. Quote Link to comment Share on other sites More sharing options...
Katybug Posted November 18, 2013 Report Share Posted November 18, 2013 I have systemic inflammation that is consistently proven by blood tests showing severely elevated C4a (a immune system compliment inflammatory marker). It isn't specific to just my muscles. I have a lot of bursitis and allodynia too. Quote Link to comment Share on other sites More sharing options...
Chaos Posted November 18, 2013 Report Share Posted November 18, 2013 MedicGirl- Is it possibly a side effect from your chemo? I know ME/CFS patients have been found to go into anaerobic metabolism at a very early point in activity. One of the by-products of anaerobic metabolism is lactate which is thought to be responsible for the muscle aches/burning that a lot of ME/CFS patients get. I wonder if the "stress" of the chemo you are getting is causing this to happen in your body at an earlier point than usual? There haven't been studies done on POTS patients (that I'm aware of at least) to document this same phenomena but given the overlaps between the two populations, it could apply in your situation.I know when I have an acute illness and am in a bad POTS flare, I will have this kind of muscle burning in my arms and legs from something as benign as trying to roll over or walk across the bedroom. Other than rest I haven't figured out anything that helps, unfortunately. Still looking though. Katybug- I think I remember you saying your immunologist ordered the C4a levels. Do you routinely have an elevated ANA, CPR or SED rate? Quote Link to comment Share on other sites More sharing options...
Katybug Posted November 18, 2013 Report Share Posted November 18, 2013 Chaos - Originally my Lyme doc ordered the C4a as it is an inflammatory marker commonly found to be elevated in Lyme patients. She said mine was one of the highest she had seen. Now my immunologist periodically orders it to see what progress we're making. We have been able to reduce it some although I've had to flares where my pain levels became severe and my C4a had gone back up, so we're able to show a clear correlation between my pain levels and my C4a levels. But, none of the other more commonly tested makers that you mention have tested out of range. It's one of the reasons why the rheumy won't try something like methotrexate on me even though we know high dose steroids completely eradicate my symptoms (although I now can't take them because I have a severe adverse rx to them). Quote Link to comment Share on other sites More sharing options...
Chaos Posted November 18, 2013 Report Share Posted November 18, 2013 My CRP is usually normal but recently tested elevated when I was having a big flare of pain. My rheumy had prescribed plaquenil last spring as "a shot in the dark" med when those markers were all normal still. Haven't tried it yet but am almost tempted to now. Haven't been able to find anyone willing to test the C4a yet. Thanks for the info! Quote Link to comment Share on other sites More sharing options...
KareBear Posted November 18, 2013 Author Report Share Posted November 18, 2013 Chaos,I believe you are absolutely correct as to what's going on. That is what is feels like and makes complete sense. I am in an unusual position not knowing what is what now and where to even begin when something new pops up. My gyn oncologist is winging it a bit too with my case. I kinda feel stuck in an area by myself with all this. So, thank you, you have helped a lot and I appreciate it I feel better about it and after looking up anaerobic metabolism and lactate I found some info on it that describes it well and I do believe that is what's going on. Thanks!!! Quote Link to comment Share on other sites More sharing options...
Chaos Posted November 19, 2013 Report Share Posted November 19, 2013 MedicGirl- When I did the two day exercise testing and found the (extremely low) point at which I hit anaerobic metabolism, the woman running the tests was saying that your anaerobic threshold could be even lower if you were ill or had an acute infection or had some other type of physical/emotional/mental stress (or combo of all three) affecting your system. I would think you would certainly be in this situation with your health as it is right now- unfortunately. Wish I had some suggestions to help improve it but other than drinking water, I haven't found much in the literature. Quote Link to comment Share on other sites More sharing options...
KareBear Posted November 19, 2013 Author Report Share Posted November 19, 2013 I appreciate the information you have given me even if we dont know how to fix it, it helps just understanding what's going on. I did not know that illness, stress, etc could all affect your system but it makes perfect sense! Right now things are confusing enough so understanding at least some of it is helpful Quote Link to comment Share on other sites More sharing options...
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