Muscle Pain

[Mito Momma]

Hey all. I was officially diagnosed with POTS in March of this year. I have been lurking in the forums since then, but I just haven't posted until now. I have found answers to many of my questions just by reading what you all have written.

My POTS has many of the usual symptoms. However, I wanted to ask you all about one symptom that I've had. I have had muscle pain/aching in my hips, upper thighs, and glutes as well as my upper arms/shoulders (though not as bad). They are very tender to touch and the discomfort increases the more I do. What is interesting is that this symptom started well over a month before most of my primary POTS symptoms appeared (dizziness, tachycardia, syncope, etc). My headaches started 4 months prior to the primary POTS symptoms.

I have been told by my physicians at Mayo that I should increase my activity and try to be vertical as much as possible. However, the more I do, the worse my muscle pain is. It's to point that I almost waddle when I walk because my hips hurt so bad when I walk. I am bringing this up now because it seems to be getting worse. They told me that I would get better over time, not worse.

Do any of you have this problem? Does anyone know of anything else that might cause POTS and muscle pain like this?

Thanks,

Robin

[lieze]

I have had some muscle pain in my thighs my calves, my intercostals, and some flank pain.

I have just wondered if it is a build up of lactic acid.

I would keep moving and my instinct has told me to try massage.

I just have 4 kids so when do I do that?

Don't give up.

Most of my symptoms have come and went.

They seem very intense at the time and almost as if you would imagine they would get worse instead of better.

But they go away-thank goodness.

The bottom of my feet hurt so bad for one week solid that when I first got up in the morning it actually brought tears to my eyes and then it totally went away.

Hang in there and I'm glad you are posting.

[janiedelite]

Since developing POTS, I've had worsening muscle pain particularly in my back. I've been to PT for over 20 visits for the back soreness and constantly tight muscles. I was very compliant with all of the exercises and stretches, some of which helped and some didn't. The PT marvels every week at how tight my back muscles are. I also have very tight hip muscles but I also had a hip injury that required 2 surgeries (2007 and 2008).

I asked my PCP about this last month and she attributed it to heightened pain receptors from my neuropathy. But I know it's more than that because the PT acknowledged that my back muscles aren't relaxing after therapy except for the initial few minutes following. As soon as I move, the tightness is back.

Movement also makes it worse for me, but lying around all day doesn't help much either.

Also, when I have a particularly active day, that night all of my muscles will tingle and twitch.

Knowing that we have dysfunctional blood vesssels, I'm wondering if there are certain areas of my muscles that just aren't being perfused properly on a regular basis. I was diagnosed at Mayo last year, and was told I'd get better most likely. It's been 4 years and I can say that their non-pharmaceutical suggestions were extremely helpful. I didn't do well with the meds they suggested, though. I think I function better now because I've learned how to adapt.

I was told my POTS was post-viral, which usually has an abrupt onset of symptoms. But my symptoms have slowly worsened over the first 3 years of illness. For the past 18 months, I've been diligently walking daily, using compression, pushing fluids and salt, etc. I haven't noticed a worsening of symptoms in the past 18 months, but if I fail to employ these helps then I get sick really quickly.

[Christy_D]

My son complains of his hips hurting. He also experiences pain in his heals.

[issie]

I don't know if any of this will apply to you or not. But, at first before my POTS diagnosis I had horrible muscle pains. There would be literal knots that would not relax, no amount of massage would help. I tried magnesium thinking this would relax it, but my weakness got worse with that. My arms got so weak I couldn't, at times lift them and they really hurt. It hurt to bend my fingers and to walk the hips hurt really bad. They diagnosised me with Fibromyligia and oseto arthritis. Since then with more testing, they found out I have Ehlers Danlos. The doctor told me that with this you will hurt all over because of the laxity of the tissues you are constantly trying to hold yourself together. Your muscles get fatigued from doing this and you get some severe arthritis feeling symptoms. Also, in addition, you are predisposed to osteo arthritis more so, because of the EDS. At times, I do take Advil and it helps with the arthritis inflamation.

[Mito Momma]

Unfortunately this muscle pain is not going away anytime soon. It has been constant since November of last year. I, of course, have my ups and downs. Maybe it just seems like it's getting worse because I'm trying to do more. I don't know.

There's no way I could have a massage right now, my muscle are very tender to touch.

Issie - I had some of the same issue. I was getting massages once a week for awhile when my headaches first started because I had horrible knots in my upper back and shoulders that just would not come out. They thought that might be causing my headaches. The massage seemed to make me feel worse though so I quit after awhile. I was taking Tramadol at one time which would help but my docs will not prescribe it anymore because they said it can be addicting. So I get to be in pain instead.

I am returning to Mayo on August 11th to see a neuromuscular specialist. I will bring up EDS at that time. I just want to make sure all of my bases are covered, you know?

[lieze]

I'm sorry that your pain hasn't let up and that you've been dealing with this for so long.

I have that problem with the knots in my shoulders and had it prepots.

I tend to carry my stress there and have poor posture since a teen that it's very difficult for me to stand correctly. I am very long waisted and don't know that I have the physical strength upper body to hold everything where it is supposed to be. My best bet is probably stretching and upper body work out. I did have a massage therapist work on those knots and that day I felt like a completely different person it was amazing. Not so tense. So I guess I went from a pretty tense uptight person to right over the top post POTS. It's hard for me to tell where one left off and the other started-the only predominant factor is this tachycardia, dizziness and panic.

And I get into weird states where I escape them and then they are seeming to slip back up on me again.

What about a muscle relaxer? I'm sure you'll get ideas when you get seen by your specialist but one thing I noticed I was doing was subconsciously tightening up all my muscles for months.

I didn't realize how tense I was until I began to relax.

I hope somehow you find an answer. No one should have to live in pain.

[Kujiforo]

I too have near constant muscle and joint pain. Sometimes it is manageable, sometimes it brings me to my knees in pain. I haven't yet been diagnosed with POTS, but POTS has been discovered to run in my family and I do get tested soon. I can somewhat understand what you are going through. Normal pain medication doesn't seem to work well in alleviating the pain for me.

[Notgivinup]

Count me in for muscle pain. Mainly neck/shoulders. Coat hanger pain, they call it. Maybe not enough blood/oxygen getting up there? IDK. Or the excess adrenaline constricticting muscles. It's pretty constant with me. Muscle relaxers make me feel crappy. A good massage would be great if only I could afford it.