Goschi Posted March 31, 2014 Report Share Posted March 31, 2014 Hi everybody,I haven't read much about this symptom and wonder if it might be directly POTS-related.Whenever I walk or stand, I feel a very strange "stiffness" of my whole body within a couple of minutes. This makes walking/standing even more difficult than it is already due to dizziness, shortness of breath, etc.I also get severe cramps in my lower legs almost immediately after the first steps of walking. This very characteristic stiffness usually lasts for quite a long time after I lay down. Though my bpm goes down quite fast when I lay down (most of the time), my whole body remains "stiff" and therefore "strained", i.e. unable to relax sometimes for hours...Does anybody else experience this? Are there any explanations for it? Quote Link to comment Share on other sites More sharing options...
Katybug Posted March 31, 2014 Report Share Posted March 31, 2014 My thoughts, although I don't experience this, are: 1) Have you had your electrolyte balance check?, 2) Have you been tested for Lyme disease sand related co-infections? , 3) Have you been thoroughly evaluated for rheumatic illnesses, 4) Have you been thoroughly evaluated for muscular disease such as myositis? Quote Link to comment Share on other sites More sharing options...
Goschi Posted March 31, 2014 Author Report Share Posted March 31, 2014 Katybug, thank you very much for your reply!I was tested for all the 4 things you mention some months ago. Anyway, I will suggest some further testing (or repeating the tests), as this "stiffness" significantly worsened recently, while my POTS vitals (bpm) didn't. However, the "stiffness" is always triggered by being upright, f.e. I always wake up without it in the morning. As soon as I get up, it starts. Therefore I thought it "must" be a POTS-symptom. Anyway, I didn't see anyone mention this in this forum, so I started to wonder... Quote Link to comment Share on other sites More sharing options...
summerbaum Posted March 31, 2014 Report Share Posted March 31, 2014 I am so glad someone else brought this up! I deal with the same thing, cant change positions without severe cramping. My potassium and electrolytes are good. Strange!! Quote Link to comment Share on other sites More sharing options...
sue1234 Posted March 31, 2014 Report Share Posted March 31, 2014 My last year, I have had had muscle stiffness, something like my torso is tight. I've posted a couple of times about it, but not many people seem to have this. I tell my doctors it's like if you are playing dodgeball and someone is getting ready to throw it at you(and you're not allowed to catch it), so you stiffen your body up to break some of the blow. My torso seems to stay in that situation most of the time.Like you, I wake up without it, but it then is with me during the day and it's hard to get comfortable when I go to bed. I literally have to almost do meditation just to make the muscles relax. The key thing is they DO relax, but only if I am intensely thinking about it, which is not reality during a 15 hour day.I have no clue why mine popped up. I had POTS 7 years before this popped up, so I don't think it is POTS-caused, but I don't really know. I seem to wonder how calcium/magnesium play into this problem for me. Quote Link to comment Share on other sites More sharing options...
Goschi Posted March 31, 2014 Author Report Share Posted March 31, 2014 Hi summerbaum and sue, I am really sorry to hear that you are both struggling with this too. I hope you are feeling not to bad in general!I had electrolytes checked recently and everything is ok. Also vitamine b (ok) and vitamine d (low, but still ok).One of my docs is still not convinced that I don't have MS, though I did in fact have "every possible test on earth" to rule it out. My POTS doc has no idea about this symptom, as it is "certainly not a POTS thing", as he puts it. Very, very strange... Quote Link to comment Share on other sites More sharing options...
E Soskis Posted March 31, 2014 Report Share Posted March 31, 2014 I thought it was an "age" thing....when I've been sitting awhile, I am very stiff upon standing - I also have problems at times getting my legs to work right - they seem heavy and draggy - it is a real conscious effort to "put one foot in front of the other" - Quote Link to comment Share on other sites More sharing options...
Katybug Posted March 31, 2014 Report Share Posted March 31, 2014 You know...the other thing might be EDS. I have EDS and I didn't mention it in my first response because I don't get directly stiff and directly better with standing and lying respectively. But I do definitely feel more pain, stiffness, and muscle/joint fatigue when upright. The longer I'm up the worse it is. It does get better once I lay down but it's not quick and it's not an improvement like you feel with other pots symptoms when you lie down. It's just a relief to get the weight off my joints and muscles but it takes time to really feel ok each day and I have bad pressure points associated with this pain when I lie down. I sometimes have to take Tylenol to control the pain and inflammation enough on these pressure points to be able to fall asleep. Quote Link to comment Share on other sites More sharing options...
ctg78 Posted May 28, 2014 Report Share Posted May 28, 2014 I definitely have this and I attribute it to our bodies constantly being in fight or flight mode.I will stretch (which is very difficult due to the extreme tightness) but it doesn't seem to help.Does anything you have tried seem to help? Quote Link to comment Share on other sites More sharing options...
Natops Posted May 28, 2014 Report Share Posted May 28, 2014 My muscles are in chronic stiffness / pain. My doctors call it myalgia. It's chronic - everyday - all day. Legs/ feet ache with trigger points, stiffness and pain. Best guess cause - it's the autoimmune channelopathy I suffer from. Mine is a calcium channel AB. The AB - has a high association with POTs. Quote Link to comment Share on other sites More sharing options...
dianne.fraser Posted May 28, 2014 Report Share Posted May 28, 2014 I'm also thought to have one of the channelopathies - some of the sub-types cause muscle stiffness and they're worthwhile reviewing if you're looking for a cause of your own symptoms. Also look at stiff person's syndrome - I've only heard of one person on the forum being diagnosed, but it might be worth considering. Quote Link to comment Share on other sites More sharing options...
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