Progressive Muslce Weakness

[ACrolley1]

I have been diagnosed with POTS recently and my doctor is now sending me to the Mayo Clinic in Jacksonville (which is where I live) for a second opinion regarding my case. Pretty much all of my symptoms are directly related to POTS, however the worst symptom does not seem to make much sense with my POTS diagnosis: progressive muscle weakness, which is why my doctor is sending me to Mayo to figure out what this means.

I know that general weakness is a symptom of POTS, however the muscle weakness that I am feeling is not the same as the weakness that has been described in articles about POTS. For example, one night I decided to go camping in my youth pastors backyard with some friends. While everyone else was playing capture the flag and jumping on the trampoline, I just sat by the fire and watched. But what little activity I had done when we first arrived such as swinging on the swings and just walking around for a little bit, made me feel miserable. After that I could barely walk in a straight line, my legs felt like jello and it felt as if I were dragging weights on my legs. After I start feeling like this, it takes 24 hours, sometimes more, for me to get back to my "normal" state.

5 years ago, when I first got sick I could hold out for certain activites for about 45 minutes. Now, my activity time is very low key and limited to just 10 minutes because of the weakness. I am still trying my best to stay as active as I can by walking around my house and pedaling on a recumbent bike for a few minutes every day because I don't want to end up being a couch potato... Although I do have my lazy days sometimes. (Smile) The doctor said that physical therapy would make me feel worse for a little while but then it would improve and I would be able to hold out longer with the more P.T I did. I have still been lengthening the time of my P.T but it keeps getting harder instead of easier because of this weakness.

What I would like to know is if anyone else has problems with this kind of debilitating weakness?

Amanda

[Christy_D]

My son has described his legs as 'licorice legs' when this occurs. There were times when he could not walk at all without putting one arm around his dad's shoulder and the other around mine for support. He has not had this problem since he started doxepin in October 2009. I have read others also decribe this, each using their own food item (licorice or as you said jello). So, I don't think it is uncommon in POTS.

Hopefully the people at Mayo in Jacksonville can help you. Medications have helped my son with many of his symptoms. It can take a while with trial and error, but hang in there.

Christy

[Chaos]

I've had this too. I've also had the whole left side of my body go numb along with the weakness, and/or have gone into tetany (muscle rigidity where you CAN'T move out of a position for hours). When I have one of these episodes, it can take weeks for me to get some strength back.

I too have had the experience of trying to do some gentle weight lifting (in cardiac rehab) but then I can't add any weight and it seems to get harder to lift what I was already lifting, and I can't do the number of reps I did before. I also, in general, am much weaker than I used to be. Can't lift, move or open things that I've always been able to do. I have heard that this can be common in Chronic Fatigue but I don't seem to have that. I'm wondering if it's not a mitochondrial disorder of some sort. From Dr. Grubbs latest research it seems a lot of us with POTS may also have a Mito issue.

When I saw the neuro at Mayo, he said this weakness was "atypical" for POTS, but said that since I'd been sick for so many years that if it was something else it should have made itself known by now.

[toddm1960]

I have this same muscle weakness, and I call them wet noodle legs Be sure to ask the Mayo doctors about mito, it sounds like there's enough symptoms to check into it. Good luck with your visit and I hope you find the answers you're looking for.

[Sarah4444]

Me too. As I got sicker this feeling got worse (and as it got worse I was able to do less and less and got sicker). Now that I am on the meds I am, I have been able to very slowly and gradually increase my ability to tolerate light exercise. But it's still very variable. I can swim (lightly) 20 min a few days in a row and then for some reason the next day have to struggle to manage 10 minutes, feeling too weak to haul my arms out of the water.

[potsgirl]

Sarah4,

I've tried to lightly exercise a couple of days in a row, too, and that just doesn't work for me. Try working out every other or every third day and see if that helps. I can't even do 2 days in a row without feeling major effects the following day!

Good luck,

Jana

[ACrolley1]

Thank you all for your replies... I enjoyed reading them! I guess it will have to take the right combination of meds and some serious motivation for physical therapy before I start to see any positive results. Hopefully our trip to Mayo will bring forth some new insight as to what kind of meds I will need.. I will mention the possibility of a mito issue to this new doctor as well. Thank you again for your posts! It's comforting to hear from other people who REALLY know what I am going through, not just by what I tell them.

Amanda

[Victoria]

. . . . Pretty much all of my symptoms are directly related to POTS, however the worst symptom does not seem to make much sense with my POTS diagnosis: progressive muscle weakness, which is why my doctor is sending me to Mayo to figure out what this means. . . .

I'm wondering if your potassium and magnesium levels are within normal range? Both of mine are low and my docs prescribed supplements to help with muscle weakness and arrhythmias. Low potassium can affect the heart's rhythm, but it can also affect skeletal muscle and paralyze them temporarily. I'd be a rag doll without Rx potassium. I'm sure Mayo will do comprehensive metabolic blood testing. Good luck.