Recently diagnosed with MG. One of my worst problems though, is that when I bend over or squat, I get weak, feel faint, and my neck back, shoulder hips, feel so fatigued. It is so bad that I am avoiding doing so many things. I fear getting weaker if I stop doing things. Does anyone else have this?

Hi Kris,

It is possible that you are suffering with orthostatic intolerance. In basic laymans terms when you stand up your blood pressure drops, the same would happen if you went from squatting to standing. Giving you a feeling of weakness and feeling faint / dizzy.

Mestinon is actually used in the treatment of this disorder as it increases your blood pressure when standing. The Mayo Clinic has been using it since about 2004.

Do you have a BP monitor? It would be interesting to conduct what is known as a poor man's tilt table test. Lay on a bed or sofa for ten minutes and then take your BP. In the time prior to taking your BP about 30 minutes do not drink, eat or smoke it will affect your reading. On standing take your BP, then again at 2, 5 and 10 mins. Does your BP drop by 20 30 mmhg? What does your heart rate do? Does it increase or decrease? If your BP drops its showing you have Postural orthastatic intolerance - has to drop by the amounts quoted (brain fog can't remember if its 20/30) .

Its quite common to develop autonomic dysfunction with an autoimmune disease.

I only know about this as I am having problems myself. My BP is low all the time, see stars when I stand up. My BP increases on standing by over 30 mmhg and my pulse increases by over 30 beats per minutes. So it looks like I have POTS.

Im not a Dr, but I think it would be a great idea for you to check out DINET, just type that into google. Its a fantastic forum with loads of information on it.

On another note make sure you drink a glass of water before getting up in the morning or if you have been sitting for a period of time.

It would also be very wise to speak to your Doctor as there are a whole host of other disorders that can give you low blood pressure and it would be extremely wise to rule these out.

I hope this helps. You aren't alone.

Rach

Hi Kris,

I also have the problem with squating and bending over. It sometimes feels like my upper body is too heavy to be supported when doing these things. I also find that extreme fullness can cause the same symptoms. With the fullness, I'm guessing it's because my stomach is maybe pushing up against my diaphragm, and this is why I feel short of breath. With bending over, I think it's a combo. of diaphragm, neck/chest weakness. With squating, I think it's a bit of weakness in upper thighs, and maybe chest/shoulders?

It's definately annoying, and was really bad before. Mine has improved enough that while it's still annoying, I'm able to cope with it a bit better, and it doesn't frighten me as much anymore....Things take a lot longer to do, but they do get done, which is good!

What meds. are you taking? I'm taking a very low dose of prednisone EOD, 150 mgs of Azathioprine, and tons of mestinon...I've only been on the Azathioprine for 2-months, but I sorta feel like it's working already...Been feeling pretty good lately (MG-wise)...

Ttys, and take care!

Nicky

I have this, too. When I bend over or squat, I get weak. This is my one MG symptom that never goes away even on my best days, although I can bend over on my good days. On my bad days, I completely avoid bending over and squatting, since sometimes I end up on the floor unable to get up until I have rested for a while.

You can add me to the list. Mine is much like Susan has described. All too often I end up on all fours or on my butt. I have had this since before I was diagnosed in 01 and has only gotten worse over the years. I'm sure my age is a contributing factor now as well.

Hugs,
Pat

Thanks for your response. I have told all of my physicians about this feeling, but they haven't commented that it is part of mg. I am relieved to find others like you. I have bad days when everything is worse including that. Then better days where I can actually go out and pull a few weeds. I take Mestinon and can't tell that it helps this feeling at all. The neurologist wants to put me on prednisone, but I am resisting due to the potential weight gain (which I feel would make me feel worse), or ImmunoGlobulin which has potential side effects as well. Can't decide which way to go. Apparantly I have had this for 14 years with no treatment. Just managed with crashing for days at the time. My diagnosis only came Jan 2010. Thanks so much.

Hi,
I am taking Mestinon only. And that is because I can't decide between Prednisone and ImmunoGlobulin therapy. However, I had severe GERD this past weekend and laid off of Mestinon trying to get my stomach to settle down and susequently I had a couple of bad mg days, one eye half closed, and twitching, feeling short of breath and weak when I bend over, arms, neck, shoulders, torso muscles, hips, thighs, fatigued with any use. Crashed for 2 days and then got up Wed feeling better. Got back on Mestinon. I am going to look up Azothioprine. Thanks for your response, it makes me feel better to know others deal with this too. Kris

I was diagnosed with dysautonomia 2 yrs ago. During the process my PP requested a D'dimer test and found growth in thymus (I'm 67 and shouldn't have thymus). Hoped removal would help...it did, but still having issues with huge swings in BP. I've learned to track my BP on a spread sheet, and have concocted a 'brew' of green or Rooibos tea with pharmaceutical grade potassium citrate and Himalayan salt. When my BP starts to get low (not unusual to get to 75/50) I drink 'brew' and BP will come back up.

I'm not in medical profession, but try not take any medication unless I have to. If anyone has other recommendations, I'm all ears.